I watched the national news tonight. Typically I love to catch a couple of newscasts this time of year, to see the "Year in Review" pieces. The video from top stories and emotional moments... but tonight it just wasn't the same.
It's like time stood still this year. I saw the oil spill and remembered that it happened just about the time Max was born, and that we could have cared less. I saw the Chilean miners, and realized that too had been overlooked by our family, with our own real drama going on at home. I saw the earthquake in Haiti, and realized I knew my friend Jerry was there, as an Army soldier... but otherwise, it just didn't matter to me.
I felt cold and hard and cruel, not really caring about these moments, or being emotional for these people and their pain. But all I can think about from 2010 is our pain. Max's pain. How much we've endured, how much we've survived, how far we've come and what we've overcome.
Here is our year in review...
April 14th, my water broke.
April 16th, Max was born (15 weeks early, not due until July 30)
2.2 pounds, Max's weight at birth
April 21 Max undergoes emergency surgery to place a drain in his abdomen. His bowel had perforated and poop was filling his belly.
April 28, Max undergoes emergency surgery to repair a leaky valve in his heart. His blood pressure had dropped dangerously low.
June 3, Max undergoes exploratory bowel surgery where doctors find he has NEC (necrotizing entercolitis) and remove small section of his bowel to the outside of his body to heal
July 20 Max has the small section of his bowel removed and his bowel sewn back together, inside his belly.
August 13 Max has surgery to repair two inguinal hernias.
August 17, Max comes home!
123 days spent in the NICU.
Mother's Day, Father's Day, July 4th, Cinco de Mayo (Alex's 3rd birthday) Memorial Day, Labor Day, all spent in the NICU.
August 18, just 1 day later, Ella started kindergarten (her birthday was 2 days after on August 20)
This year, I can't think of life in terms of anything or anyone but Max. That's the way our lives have been. We have been turned upside down, inside out and backwards.... We've changed what we do, how we do it, who we can see, what we touch, everything. It's been a sacrifice and a struggle, and it continues even now.
Max has been sick for more than a month. He started with a cold, which turned into an ear infection, then early pneumonia, and now, he's getting breathing treatments every 4 hours, he's finished 2 rounds of antibiotics, and he's still not himself. He's eating less, wheezing, and we see the doctor again tomorrow. He'll have his ears and his lungs re-checked, and he'll get his 3rd RSV shot.
We don't see an end in sight, just yet. But we are blessed. God gave us Max. He let him live and come home. He has given us countless smiles and giggles and a wonderful Christmas together. But this has been a year of fear, and that fear continues to grip us tonight.
We heard last week, about a little girl, just a year old, a friend of a friend, who died. She was sick with pneumonia and woke her parents coughing in the night. 2 days later, she was dead. This terrifies us. We know that Max is just one sickness away from death. At any moment over these first couple of years, his body is just so fragile. That thought scares us more than anything. He has survived so much, we all have. We got him home, he's been healthy and happy and we so want to keep him that way. The thought of losing him, after all we've been through it it just too much.
So we focus on the present. We take care of him. We love him. We pray that God will let us keep him. Not just today, or tonight, but for 2011 and many, many years to come.
Wednesday, December 29, 2010
Brother and Sister...
It was great to have my little brother here over the Christmas holiday! (he's almost 40 and not so little.. but anyway)
He's been home to see my parents, but we haven't coordinated very well, so we've been in Florida etc.. and have missed his visits.
This time around, he was able to fly into KC for a few days, meet
everyone in our growing family, and it was just fantastic to catch up.Had to post a few photos of him with the kiddos. They LOVED seeing Uncle James and were very sad when we took him back to the airport today. Ella was FASCINATED with his buzz cut and kept rubbing his head. She followed him around, helped him make his hot tea, etc... it was really sweet how she latched onto him so quickly.
Can't wait for him to come back for another visit soon!
Monday, December 27, 2010
Merry Christmas from the Robinsons!
What a wonderful Christmas it was! We were so thrilled to spend Max's first Christmas together at home!
Alex loving on his new puppy (I spent $23 on eBay to replace the $9 toy he's had since birth)
Santa's biggest surprise wouldn't fit under the tree!
Max's favorite was the new exersaucer from Papa and Gramma!
Coming down to see all the loot under the tree!
Alex loving on his new puppy (I spent $23 on eBay to replace the $9 toy he's had since birth)
Ella was excited about her Tinkerbell and Beauty and the Beast Blu Ray's.
My boys in their matching green vests.
Santa's biggest surprise wouldn't fit under the tree!
They've been jumping on the trampoline in our basement, non-stop since they found it!
Max's favorite was the new exersaucer from Papa and Gramma!
Merry Christmas!!! and Happy 2011!!!
Wednesday, December 15, 2010
Ghosts of Christmas cards past...
I saw this idea on a friend's blog and HAD to steal it! What a great excuse to look at Christmas cards since our family started and see how far we've come!
2008
2009
Loved these photos shot at Union Station. The kids had a blast!
I can't wait for another 20 years to look back at these wonderful moments in time. It's great to remember all our Christmases together so far, and think of how many more we're going to celebrate!
2004
Newlyweds (this is our engagement photo)
We found out on Christmas morning that we were pregnant!!!
Newlyweds (this is our engagement photo)
We found out on Christmas morning that we were pregnant!!!
2005
Ella was just 4 months old, her first Christmas
Ella was just 4 months old, her first Christmas
2006
Ella was a year old, and we were pregnant again!
Ella was a year old, and we were pregnant again!
2007
The year of Alex! He was born in May, Mommy started working from home, and we had LOTS of fun times together!
2008
2009
Loved these photos shot at Union Station. The kids had a blast!
and finally, 2010!
This year's card was not "scanner friendly" so I had to just take a picture of the card sitting out. I did love how it would accordion fold into a neat little response envelope. Plus, with 3 kids, lots more to say this year.
This year's card was not "scanner friendly" so I had to just take a picture of the card sitting out. I did love how it would accordion fold into a neat little response envelope. Plus, with 3 kids, lots more to say this year.
I can't wait for another 20 years to look back at these wonderful moments in time. It's great to remember all our Christmases together so far, and think of how many more we're going to celebrate!
Tuesday, December 7, 2010
Recovering... we hope and Breakfast with Santa
Max is finally starting to do a little bit better today. He's coughing up a LOT of goop... but his eyes aren't oozing anymore, his fever is gone, and he's maintaining his body temperature with some extra layers of clothes and blankets.
It's been a rough week! Troy and I both wound up with the same respiratory infection that Max has. We had to miss the Erickson's Christmas party, which we really look forward to. (since it's the party where we first met 8 years ago)
We stayed in and took care of Max and one another... then we tag-teamed urgent care on Sunday morning when we both felt pretty horrible.
We basically drew straws and Troy was more miserable than me, so I took Ella and Alex to our neighborhood "Breakfast with Santa." They were so excited and honestly, we don't want to drag Max to a mall, so this was an easy option to get them some face time with the big guy. I just wish that Max could have gone with them. Not that he realized it, but this is his first Christmas, and I so wanted that picture of all 3 of my babies with Santa. I'm just grateful to have him home and while this is a challenging winter, basically living like hermits!!! We can do this! We made it through 123 days in the NICU and we will survive this long, lonely winter. Max needs to be away from everyone. We have that imaginary 3 foot barrier to keep our "boy in the bubble" safe and it's a small price to pay for having him home with us.
Max and Daddy just hung out together at home... but Ella and Alex both did really well... they made ornaments, sat on Santa's lap and told him what they wanted, and didn't scream or cry. In my book, that's a successful sitting.
I think they like the "Chris Cakes" pancakes and sausage best... he tosses them off the grill and kids get to catch them on their plate. Mine both missed of course... but there were LOTS of other pancakes on the floor.
(notice Ella's new "big girl" hair cut... she's been begging for it and actually wants to go shorter.. she already has the shortest hair in her dance class, and I have to be able to get it up for their competitions in a few months, so she may be out of luck, but it is a LOT easier for her to take care of herself at this shorter length...)
It's been a rough week! Troy and I both wound up with the same respiratory infection that Max has. We had to miss the Erickson's Christmas party, which we really look forward to. (since it's the party where we first met 8 years ago)
We stayed in and took care of Max and one another... then we tag-teamed urgent care on Sunday morning when we both felt pretty horrible.
We basically drew straws and Troy was more miserable than me, so I took Ella and Alex to our neighborhood "Breakfast with Santa." They were so excited and honestly, we don't want to drag Max to a mall, so this was an easy option to get them some face time with the big guy. I just wish that Max could have gone with them. Not that he realized it, but this is his first Christmas, and I so wanted that picture of all 3 of my babies with Santa. I'm just grateful to have him home and while this is a challenging winter, basically living like hermits!!! We can do this! We made it through 123 days in the NICU and we will survive this long, lonely winter. Max needs to be away from everyone. We have that imaginary 3 foot barrier to keep our "boy in the bubble" safe and it's a small price to pay for having him home with us.
Max and Daddy just hung out together at home... but Ella and Alex both did really well... they made ornaments, sat on Santa's lap and told him what they wanted, and didn't scream or cry. In my book, that's a successful sitting.
I think they like the "Chris Cakes" pancakes and sausage best... he tosses them off the grill and kids get to catch them on their plate. Mine both missed of course... but there were LOTS of other pancakes on the floor.(notice Ella's new "big girl" hair cut... she's been begging for it and actually wants to go shorter.. she already has the shortest hair in her dance class, and I have to be able to get it up for their competitions in a few months, so she may be out of luck, but it is a LOT easier for her to take care of herself at this shorter length...)
Saturday, December 4, 2010
Back to the hospital
I took Max to Children's Mercy again tonight. Troy made it home just in time for me to leave Alex with him, drop Ella at her friend Riley's birthday party and head to the hospital.
He started wheezing late this afternoon and I was too late to get into his doctor's office. His lungs have been through so much, that we just can't wait anything out, we have to get it checked.
The doctor said he is moving air pretty well, but there was a lot of mucous and he was really working hard to breath. So they did some deep suction, which REALLY pissed him off!! He was so red and fighting so hard, that he burst some tiny blood vessels on his face and gave himself a rash!
His ears are still really infected, and we're having trouble keeping the medicine down, so I'm hoping that getting rid of some of this snot will help. His little tummy is just upset from all the goo!!!
Anyway, he's breathing much easier tonight, and I'm hoping we'll ALL get a good night's sleep.
He started wheezing late this afternoon and I was too late to get into his doctor's office. His lungs have been through so much, that we just can't wait anything out, we have to get it checked.
The doctor said he is moving air pretty well, but there was a lot of mucous and he was really working hard to breath. So they did some deep suction, which REALLY pissed him off!! He was so red and fighting so hard, that he burst some tiny blood vessels on his face and gave himself a rash!
His ears are still really infected, and we're having trouble keeping the medicine down, so I'm hoping that getting rid of some of this snot will help. His little tummy is just upset from all the goo!!!
Anyway, he's breathing much easier tonight, and I'm hoping we'll ALL get a good night's sleep.
Thursday, December 2, 2010
Divas for a day... or more
Ella and Sophia recently spent their Saturday morning being DIVAS! (like they're not divas all the time??) A local high school class sponsored the clinic for little girls as a fundraiser for their fashion merchandising department. The girls got all dolled, and walked the runway in the high school theater for all their parents. I think they had a blast, and they really looked cute!
Ella's practice walk
Sophie!
Ella struts her stuff
Ella's practice walk
Sophie!
Ella struts her stuff
All the DIVAS after the show
The boy in the bubble gets his shots
Max has a double ear infection, and upper respiratory infection that's settled in his eyes, and the early stages of pneumonia. He's on an antibiotic, which we're having a little trouble keeping down. Can't keep Tylenol down just yet either... but hope to get him feeling better in the next couple of days.
They did give him his second RSV and second flu shots today... he has a short window on the RSV to keep his immunity up, and the doctor advised against waiting. Poor, sick little man.
In the meantime, we have a new set of rules from his pediatrician to try to keep him more isolated from germs. No more overnight guests, and no one within a 3 foot perimeter of Max. No touching, holding, hugging, or smooching, even sitting too close and breathing on him could be a risk until we get through cold and flu season. This is going to SUCK for the holidays, since we have a lot of parties, gatherings, guests, etc... but we'll do whatever we have to in order to keep this little man from the germs.
We're literally bathing in the antibacterial gel around here... it's so tough to keep him from everything! I'm wondering about keeping him quarantined to his room where only Troy and I would be in there... but the kids would hate not seeing him from anywhere closer than the doorway. Poor little guy is like the boy in the bubble!
They did give him his second RSV and second flu shots today... he has a short window on the RSV to keep his immunity up, and the doctor advised against waiting. Poor, sick little man.
In the meantime, we have a new set of rules from his pediatrician to try to keep him more isolated from germs. No more overnight guests, and no one within a 3 foot perimeter of Max. No touching, holding, hugging, or smooching, even sitting too close and breathing on him could be a risk until we get through cold and flu season. This is going to SUCK for the holidays, since we have a lot of parties, gatherings, guests, etc... but we'll do whatever we have to in order to keep this little man from the germs.
We're literally bathing in the antibacterial gel around here... it's so tough to keep him from everything! I'm wondering about keeping him quarantined to his room where only Troy and I would be in there... but the kids would hate not seeing him from anywhere closer than the doorway. Poor little guy is like the boy in the bubble!
Wednesday, December 1, 2010
Sick..
The whole family has it... but Max has it worse than anyone. We've picked up a cold over the holiday weekend and Max is suffering.
We took him to see the doctor Monday when the fever started, along with a bad cough. He has nasty green puss coming out of his eyes and a snotty nose and cough. The cough is the worst part. It's getting deeper in his lungs, and it worries us, because he is so susceptible to pneumonia.
He's supposed to get his second flu shot and second RSV shot tomorrow. The doctor is really pushing to get them in, because he only has a short window, but he may be just too sick. Once Troy gets home tonight, I'll likely takeMax to Children's Mercy for a chest x-ray so we can get things checked out again.
Alex has been running a low-grade fever, the rest of us just have a sore throat and runny nose... but this stinks!!!
We took him to see the doctor Monday when the fever started, along with a bad cough. He has nasty green puss coming out of his eyes and a snotty nose and cough. The cough is the worst part. It's getting deeper in his lungs, and it worries us, because he is so susceptible to pneumonia.
He's supposed to get his second flu shot and second RSV shot tomorrow. The doctor is really pushing to get them in, because he only has a short window, but he may be just too sick. Once Troy gets home tonight, I'll likely takeMax to Children's Mercy for a chest x-ray so we can get things checked out again.
Alex has been running a low-grade fever, the rest of us just have a sore throat and runny nose... but this stinks!!!
Sunday, November 28, 2010
Poop...
We just never get tired of it around here. Since he had 3 bowel surgeries... Max's "motility" is a bit of an issue. I've been pushing it with our pediatrician, and she told me last week she wanted to get Max's surgeon involved again because he just struggles to poop!
So, I called up Dr. Schropp and had a wonderful conversation with his nurse who spoke with him while I was o the phone... VOILA! Problem resolved... at least it seems to be. He agreed that the high calorie and high mineral content special preemie formula (which was so instrumental in strengthening his brittle bones at the time we left the hospital) is too much for his bowels. We've switched to something more gentle to digest, and it's a poop factory around here again!
He also had us add 8 more ounces a day of apple juice or water in addition to his formula, which really waters things down, fills him up, and generally makes Max a MUCH happier boy. I'm glad that such a simple solution could help give him some relief and that things really seem to continue to be on track.
We see Dr. Stuppy this week for RSV shot #2 and his 2nd flu shot as well... can't wait to see how big he is... I'm thinking 16 pounds... my little Butterball!!
So, I called up Dr. Schropp and had a wonderful conversation with his nurse who spoke with him while I was o the phone... VOILA! Problem resolved... at least it seems to be. He agreed that the high calorie and high mineral content special preemie formula (which was so instrumental in strengthening his brittle bones at the time we left the hospital) is too much for his bowels. We've switched to something more gentle to digest, and it's a poop factory around here again!
He also had us add 8 more ounces a day of apple juice or water in addition to his formula, which really waters things down, fills him up, and generally makes Max a MUCH happier boy. I'm glad that such a simple solution could help give him some relief and that things really seem to continue to be on track.
We see Dr. Stuppy this week for RSV shot #2 and his 2nd flu shot as well... can't wait to see how big he is... I'm thinking 16 pounds... my little Butterball!!
Thursday, November 25, 2010
Our own NICU reunion...
Better late than never, but we made a real trip back to the NICU today, to take stuffing, as part of a meal ,which the parents' support group prepared.
It was wonderful to see so many familiar faces, and to have them see Max all happy and healthy! He just smiled from ear to ear when he heard some of those familiar voices!!! (I have to say I missed Valerie in my list of primary nurses thanks and I could just kick myself!!! We saw her down the hall today and I just couldn't wait to give her a hug! Valerie was really one of Max's first favorites. He and Marco kept her hopping back and forth from room to room. He kept Valerie on her toes and she kept us calm. )
Troy and I both did the 3 minute scrub, while the receptionists fought over who got to hold Mr. Max. We helped set up the meal for parents who will spend this holiday at the hospital. And we talked on the way home about how grateful we are, on this Thanksgiving to have all 3 of our children under one roof!! God has blessed us, even through this difficult year. He has made us stronger as a family than we ever knew we could be.
It was the right time for us to go back... we weren't ready for the actual reunion back in September... but now, that we'd given it sometime, it felt good to be back, and see how far we've come. Max doesn't even look like a baby that came out so small and sick and fighting for life! He's so full of life and energy and joy. What a great Thanksgiving gift for us!
It was wonderful to see so many familiar faces, and to have them see Max all happy and healthy! He just smiled from ear to ear when he heard some of those familiar voices!!! (I have to say I missed Valerie in my list of primary nurses thanks and I could just kick myself!!! We saw her down the hall today and I just couldn't wait to give her a hug! Valerie was really one of Max's first favorites. He and Marco kept her hopping back and forth from room to room. He kept Valerie on her toes and she kept us calm. )
Troy and I both did the 3 minute scrub, while the receptionists fought over who got to hold Mr. Max. We helped set up the meal for parents who will spend this holiday at the hospital. And we talked on the way home about how grateful we are, on this Thanksgiving to have all 3 of our children under one roof!! God has blessed us, even through this difficult year. He has made us stronger as a family than we ever knew we could be.
It was the right time for us to go back... we weren't ready for the actual reunion back in September... but now, that we'd given it sometime, it felt good to be back, and see how far we've come. Max doesn't even look like a baby that came out so small and sick and fighting for life! He's so full of life and energy and joy. What a great Thanksgiving gift for us!
Wednesday, November 24, 2010
More cuteness...
Just two little things I'm thankful for. You hear a lot about Max these days, but my other 2 babies just warm my heart. Here are a couple of the pictures from our holiday photo shoot with Tammy Pence, one of Ella's preschool teachers from last year. She has a booming new business and was so great with the kids!!! Check her out at tammypence.com...
These are just a couple from her Facebook page that I can share for now...
These are just a couple from her Facebook page that I can share for now...
Thanks by the Letters: X,Y and Z
I'm wrapping this up today.. 1.) because I have lots of cooking to do for tomorrow's big feast, 2.) because we're going to the NICU to help with Thanksgiving dinner tomorrow as well as preparing our meal here 3.) because I only have a few things I could think of with these remaining letters...
X-rays:
I was so thankful to see them almost everyday. They showed me how much fluid was in Max's lungs, where the breathing and feeding tubes were placed, how his cracked ribs were healing, if he had any poop backing up, etc... Those x-rays were a picture inside his tiny little body. And to the GENIUS who created his warming bed with the slot already built in for the xray film, thank you for not making us disturb him every time an image was ordered!!!
You:
I'm just sure I've overlooked someone, maybe several people... so this if for you if I forgot to mention your help earlier. I know I overlooked our dear nurse Nancy. She was Max's nurse on the day I was discharged from the hospital, which was hard. She wound up being one of our primary nurses and her experience and loving care meant so much. Nancy could explain just about anything and make me feel better about how things were going. I wish we could have seen her before we left and I HATE that I don't have your contact information... so look me up if you're reading this.
Zantac:
Max gave me INCREDIBLE heartburn while I was pregnant, morning, noon and night. I was so grateful to be able to take Zantac, and get some relief. The doctor actually prescribed this for Max after we came home, to help with his reflux. Didn't work so well for him... but worth a try.
Zillions of thoughts, well wishes, cards, and prayers:
Thank you, thank, thank you to our village for helping us through this year!!! It has been the most challenging and stressful of our lives, but also, the most rewarding. We are blessed to have one another, a home, a job, a car, and friends and family.
Happy Thanksgiving everyone!
Jennifer (for Troy, Ella, Alex, and Max too!!!)
X-rays:
I was so thankful to see them almost everyday. They showed me how much fluid was in Max's lungs, where the breathing and feeding tubes were placed, how his cracked ribs were healing, if he had any poop backing up, etc... Those x-rays were a picture inside his tiny little body. And to the GENIUS who created his warming bed with the slot already built in for the xray film, thank you for not making us disturb him every time an image was ordered!!!
You:
I'm just sure I've overlooked someone, maybe several people... so this if for you if I forgot to mention your help earlier. I know I overlooked our dear nurse Nancy. She was Max's nurse on the day I was discharged from the hospital, which was hard. She wound up being one of our primary nurses and her experience and loving care meant so much. Nancy could explain just about anything and make me feel better about how things were going. I wish we could have seen her before we left and I HATE that I don't have your contact information... so look me up if you're reading this.
Zantac:
Max gave me INCREDIBLE heartburn while I was pregnant, morning, noon and night. I was so grateful to be able to take Zantac, and get some relief. The doctor actually prescribed this for Max after we came home, to help with his reflux. Didn't work so well for him... but worth a try.
Zillions of thoughts, well wishes, cards, and prayers:
Thank you, thank, thank you to our village for helping us through this year!!! It has been the most challenging and stressful of our lives, but also, the most rewarding. We are blessed to have one another, a home, a job, a car, and friends and family.
Happy Thanksgiving everyone!
Jennifer (for Troy, Ella, Alex, and Max too!!!)
Tuesday, November 23, 2010
Thanks by the Letters: W
Windows:
We were thrilled when Max was moved back to Cactus Circle in the NICU. He had a much bigger room, and WINDOWS!!! When you're spending 6-8 hours a day in there with him... it helps to be able to see the outside world. It helped him. He first started to notice the sunshine and rain, etc... after he was moved to that room, and having that natural light has really helped him to have a great sleep schedule!
Warmer:
Charlotte called it his Ostomy Changing Station and Spa. That warmer made Max's life much more comfortable, when he was having his ostomy bag changed regularly and it would take up to an hour to get it off, get him clean, and get a new one one, he needed a little help not to get too cold. The warmer made him so happy, he'd sleep through a lot of the hoopla! ( just look at how relaxed he was!!!)
We were thrilled when Max was moved back to Cactus Circle in the NICU. He had a much bigger room, and WINDOWS!!! When you're spending 6-8 hours a day in there with him... it helps to be able to see the outside world. It helped him. He first started to notice the sunshine and rain, etc... after he was moved to that room, and having that natural light has really helped him to have a great sleep schedule!
Warmer:
Charlotte called it his Ostomy Changing Station and Spa. That warmer made Max's life much more comfortable, when he was having his ostomy bag changed regularly and it would take up to an hour to get it off, get him clean, and get a new one one, he needed a little help not to get too cold. The warmer made him so happy, he'd sleep through a lot of the hoopla! ( just look at how relaxed he was!!!)
Monday, November 22, 2010
Thanks by the Letters: U and V
Ultrasound:
I can't even count how many of these I had while I was pregnant. Every time, they showed me Max was alive and well and growing made me so happy. When my water broke, the ultrasound showing that Max was still in a little pool of fluid and doing okay, was my list sense of calm with him inside me. Then everything changed...
Max had ultrasounds of his brain many times during his NICU stay. They detected a small brain bleed when he was born. Likely because his blood vessels were not strong enough yet, so they burst. Lucky for us, his was a level 1, small bleed which resolved itself before we left the hospital.
Ventilator:
Hated hated hated it!!! But it kept Max alive and breathing for more than 3 months, while his body healed and grew and he learned to breathe on his own. Hated going back on it for his surgeries... but so grateful to have him with us.
Visitors:
To those of you who were brave enough to visit the NICU and meet Max during his not so pretty times... from Laura and my parents (his first guests) to Nicole (his final guest as we were taking him home) we were thrilled to have you at the bedside, where you could see what life was really like on a daily basis for us, and for Max. Sometimes is was pretty ugly, with the wires, tubes, poop and blood... but you never wavered in your support. You lifted us, you cheered us, you encouraged us and you loved us. We are blessed to have had you there by our sides.
I can't even count how many of these I had while I was pregnant. Every time, they showed me Max was alive and well and growing made me so happy. When my water broke, the ultrasound showing that Max was still in a little pool of fluid and doing okay, was my list sense of calm with him inside me. Then everything changed...
Max had ultrasounds of his brain many times during his NICU stay. They detected a small brain bleed when he was born. Likely because his blood vessels were not strong enough yet, so they burst. Lucky for us, his was a level 1, small bleed which resolved itself before we left the hospital.
Ventilator:
Hated hated hated it!!! But it kept Max alive and breathing for more than 3 months, while his body healed and grew and he learned to breathe on his own. Hated going back on it for his surgeries... but so grateful to have him with us.
Visitors:
To those of you who were brave enough to visit the NICU and meet Max during his not so pretty times... from Laura and my parents (his first guests) to Nicole (his final guest as we were taking him home) we were thrilled to have you at the bedside, where you could see what life was really like on a daily basis for us, and for Max. Sometimes is was pretty ugly, with the wires, tubes, poop and blood... but you never wavered in your support. You lifted us, you cheered us, you encouraged us and you loved us. We are blessed to have had you there by our sides.
Saturday, November 20, 2010
Thanks by the Letters: T
TPN:
This was Max's IV nutrition.. or "baby Gatorade." It fed and nourished him for more than 3 months when his bowels were too damaged to digest anything else. It had plenty of side effects, making his bones so brittle he had broken ribs, etc... but it kept him alive until he could eat!
Telephones:
I was so glad to have my cell phone in the NICU. You can't call out from inside the unit, but you can text and view emails and that was a great way to communicate with Troy, with friend who were caring for Ella and Alex, basically, it was my only contact with the outside world while I was trapped inside those 4 walls. I'd text Jamie in the wee hours and she'd be up there with chai to sit with me and Max through any crisis. I'd text Kimmie in a crisis and she'd talk me through it, telling me what a fighter he was, and that we'd be okay. What did I ever do before texting??? That telephone was my life line!!!
This was Max's IV nutrition.. or "baby Gatorade." It fed and nourished him for more than 3 months when his bowels were too damaged to digest anything else. It had plenty of side effects, making his bones so brittle he had broken ribs, etc... but it kept him alive until he could eat!
Telephones:
I was so glad to have my cell phone in the NICU. You can't call out from inside the unit, but you can text and view emails and that was a great way to communicate with Troy, with friend who were caring for Ella and Alex, basically, it was my only contact with the outside world while I was trapped inside those 4 walls. I'd text Jamie in the wee hours and she'd be up there with chai to sit with me and Max through any crisis. I'd text Kimmie in a crisis and she'd talk me through it, telling me what a fighter he was, and that we'd be okay. What did I ever do before texting??? That telephone was my life line!!!
Friday, November 19, 2010
Thanks by the Letters: S
Smiles!!!
I just love seeing my babies smile. Ella smiles and those blue eyes just twinkle. Alex is usually hamming it up or sticking out his tongue... but Max's smiles just light up the room. Look at this boy! It's a thrill to see him so happy and silly after all he's been through. He deserves to have this much fun!!!
Surgeons:
I can't leave out these medical marvels. We were lucky enough to have two wonderful surgeons on "Team Max" during his NICU stay.
Dr. Miller was the surgeon who swooped in and repaired his PDA (heart valve) when he was just a few days old. He had to tell us if something went wrong with this surgery, it would be catastrophic and Max would not survive. We were terrified and I can't imagine saying that over and over every day. He came out with THRILLING news. Max's blood pressure had improved dramatically from the surgery, and he was doing even better than expected. I guess that makes it all worth it...
Dr. Schropp, was like a myth for weeks for me. He was consulted on the phone when Max was 5 days old and needed the emergency drain in his abdomen to drain poop from inside his belly. He apparently saw Max several time... but we never met him. We waited the 6 weeks, and when the drain worked, but the bowel didn't heal, the doctors told us we'd need another surgery. Call me protective, but I was INSISTING I needed to see and speak to and ask questions of this mystery man. I had 3 pages... 23 questions and follow-ups to ask... and Dr. Schropp made time to come in and meet with both Troy and I one evening, after surgeries. It was about 6 p.m. and I"m sure he was ready to go home... but he sat there with the nurse and NNP and let me ask everything on my list. He had answers and sometimes they were scary, often it was, "I won't know until we get in there and see the damage." But he talked us through everything and when we were done, I knew this was the next step in saving Max. We'd tried everything else... the option now was to find out what damage had been done to his bowel and fix it, or let him continue to go with out food and starve to death. I told Dr. Schropp, "I realize you do these surgeries all the time, and it's no big deal... but I only have 1 baby in the NICU and for me, it's HUGE! I've done my research and my job in learning all I can about what's happening and what we can do. Now I'm handing it over to you, and I want my boy back when you're done." Dr. Schropp operated on Max 3 times after that, exploring his bowel and creating and ostomy.... then reversing that ostomy when the bowel had healed, and finally to repair his double hernias and preform his circumcision. We saw him just once after leaving the NICU. When he saw how Max had grown, how happy and healthy he looked, how Max SMILED at him, he was overcome. He kept telling all the residents and nurses "You have no idea how sick this baby was. It's a miracle to see him like this!" I was so happy to have him see Max this way, after all his wonderful work to save Max's life.
Starbucks:
What can I say... I could not have survived with out my non-fat chai latte and a slice of pumpkin bread.
Sarah:
We love miss Sarah! She's our favorite nurse/babysitter/friend. She came to stay with the kids several times, she cleaned, took them on play dates to movies and Deanna Rose and more and rarely let me pay her! She taught the infant CPR class Troy and I had to take before Max came home, and guess what... she's the only sitter I've left Max with so far... so we can go to events at Ella's school and keep him from the germs. We love you Sarah and we are so blessed to have you with our children!
Shannon:
The unsung hero of Max's donated breast milk. Shannon is Nicole's wonderful husband and he is Lilli and Addilyn's Daddy. When Nicole and Shannon brought the milk up to the NICU for us, it was only the second time we'd seen him, but he was so comfortable with us, and more importantly, with
Max. It had to be so hard for them to be back in that room, where Lilli had spent so many days, and we all shared a moment, knowing how much we'd been through, how hard this is when you're living it 24/7 and how, but for the grace of God, we could have been in their shoes.Nicole and I were both in tears of course... and Shannon broke down too. It was wonderful to see and I think it helped Troy to finally let go and cry with us. He hadn't cried with me. He would cry in the car while running errands or in the shower... but for all of us to cry together... knowing we had all lived this nightmare in the NICU... was so important for Troy and I. Troy is always the strong one, "the Rock" but sometimes, I needed him to help me by showing his emotions too. I felt like I was all over the place... and I needed to know that his was riding the same roller coaster and that once in awhile... he'd plummet.
Thank you Shannon for being man enough to cry with us and show us that when it comes to your baby, it's okay to be as emotional as you want. Thank you for supporting Nicole for all those weeks while she was pumping and caring for Lilli. Thank you for agreeing to the donation and for helping to get those 4 coolers to us. You're a wonderful Daddy and we can't wait to meet your beautiful daughter next year!
Thursday, November 18, 2010
Thanks by the Letters: R
Respiratory Therapists:
They kept Max breathing for all those months he was on the ventilator and the CPAP and nasal oxygen... Sometimes, he'd get a shower through his nose, or a mucous in his lungs, and they'd help clear him out so he could breathe easier again. They went with him to surgeries and procedures, always helping the nurses make sure he was getting the oxygen he needed. I'm thankful for Paula, Missy, Stacie, Gabe, Donna, Paxton, and I'm sure I'm forgetting someone???
RSV shots:
They are life-saving for preemies like Max. They can keep him from getting a severe version of this respiratory virus, in his first two years of life. He'll need one shot, every month, for 5-6 months this winter.. and maybe next winter too. They are NOT CHEAP!!!! (almost $2000 each!!!) We are thankful that these shots are available, and that our insurance approved them.
They kept Max breathing for all those months he was on the ventilator and the CPAP and nasal oxygen... Sometimes, he'd get a shower through his nose, or a mucous in his lungs, and they'd help clear him out so he could breathe easier again. They went with him to surgeries and procedures, always helping the nurses make sure he was getting the oxygen he needed. I'm thankful for Paula, Missy, Stacie, Gabe, Donna, Paxton, and I'm sure I'm forgetting someone???
RSV shots:
They are life-saving for preemies like Max. They can keep him from getting a severe version of this respiratory virus, in his first two years of life. He'll need one shot, every month, for 5-6 months this winter.. and maybe next winter too. They are NOT CHEAP!!!! (almost $2000 each!!!) We are thankful that these shots are available, and that our insurance approved them.
Wednesday, November 17, 2010
Thanks by the Letters: Q
Quiet:
Which I had absolutely none of today... we had 14 new windows installed, there was sawing, prying, hammering, drilling, freezing, screaming, arguing, swearing, etc...
It's days like today, when I miss the quiet. Max had some quiet time. I closed his door, turned on his music, and he snoozed, barely able to hear the sounds of all the chaos downstairs. He can still do that. He's used to sleeping with a lot going on around him... but I miss those quiet days in the NICU. People there, they think it's noisy, because of monitors beeping, oxygen pumping, air flowing, alarms going off, etc... but actually, it's quiet. It is noisy, but it's quiet, does that make sense??
It's quiet because there is no outside world, no clock, no telephones, no bills to pay or errands to run, no dinner to make, no worries... well, actually there is all that stuff. But during those days in the NICU... I sometimes just forgot about it all. I was so focused on Max and our time together and helping him to grow and heal that I tuned everything else out. It was quiet and relaxing, just to be with him. Just to hold him and be still. I would get in trouble, for holding him and falling asleep with him in my arms. But it was that peace and quiet of holding him, knowing that at that moment he was alive and okay, that I could finally relax.
I miss my quiet now... maybe I should try ear plugs???
Which I had absolutely none of today... we had 14 new windows installed, there was sawing, prying, hammering, drilling, freezing, screaming, arguing, swearing, etc...
It's days like today, when I miss the quiet. Max had some quiet time. I closed his door, turned on his music, and he snoozed, barely able to hear the sounds of all the chaos downstairs. He can still do that. He's used to sleeping with a lot going on around him... but I miss those quiet days in the NICU. People there, they think it's noisy, because of monitors beeping, oxygen pumping, air flowing, alarms going off, etc... but actually, it's quiet. It is noisy, but it's quiet, does that make sense??
It's quiet because there is no outside world, no clock, no telephones, no bills to pay or errands to run, no dinner to make, no worries... well, actually there is all that stuff. But during those days in the NICU... I sometimes just forgot about it all. I was so focused on Max and our time together and helping him to grow and heal that I tuned everything else out. It was quiet and relaxing, just to be with him. Just to hold him and be still. I would get in trouble, for holding him and falling asleep with him in my arms. But it was that peace and quiet of holding him, knowing that at that moment he was alive and okay, that I could finally relax.
I miss my quiet now... maybe I should try ear plugs???
Tuesday, November 16, 2010
Thanks by the Letters: P
Pain Meds:
When Max needed them... they were there and they kept him comfortable during some very difficult times.
Preschool:
Thanks goodness Ella had her friends and extended family at Colonial to keep her sane and in some sort of routine for much of the year!
Parents' Room:
It was a great escape from Max's room... just to grab coffee or get on the Internet and even better to curl up on the couch with Troy while we waited during Max's many surgeries. This was our only escape.
Prayers:
Words cannot express how grateful we are for all the prayers that were sent up for Max and for us. God is good. He got us through this and gave us this special little angel to love.
Papa:
He's kind of a pain in the butt sometimes... and I know he reads this, but that's okay. My Dad is still the best Papa our kids could ask for. He loves them so much and he loved Max from the minute he was born. Thanks Papa for the constant calls and emails. Although they drove us nuts sometimes... we knew you cared and were thinking about Max every minute. Thanks for the black market formula search, the cases of formula you sent, the cases of diapers that showed up on the porch, and the generous check . (just knowing that we had a cushion and didn't have to worry every day about bills and bouncing checks and child care, and meals when life was so crazy in those first days, was great!) We love you Papa!
When Max needed them... they were there and they kept him comfortable during some very difficult times.
Preschool:
Thanks goodness Ella had her friends and extended family at Colonial to keep her sane and in some sort of routine for much of the year!
Parents' Room:
It was a great escape from Max's room... just to grab coffee or get on the Internet and even better to curl up on the couch with Troy while we waited during Max's many surgeries. This was our only escape.
Prayers:
Words cannot express how grateful we are for all the prayers that were sent up for Max and for us. God is good. He got us through this and gave us this special little angel to love.
Papa:
He's kind of a pain in the butt sometimes... and I know he reads this, but that's okay. My Dad is still the best Papa our kids could ask for. He loves them so much and he loved Max from the minute he was born. Thanks Papa for the constant calls and emails. Although they drove us nuts sometimes... we knew you cared and were thinking about Max every minute. Thanks for the black market formula search, the cases of formula you sent, the cases of diapers that showed up on the porch, and the generous check . (just knowing that we had a cushion and didn't have to worry every day about bills and bouncing checks and child care, and meals when life was so crazy in those first days, was great!) We love you Papa!
Monday, November 15, 2010
Thanks by the Letters: O
Overland Park Regional:
I'm thankful that when I asked about my options, Dr. Arroyo told me to deliver here. It was because of the NICU, and at that time, we didn't even need it. But we would...
I am thankful that Max was born in a hospital where I would spend my first 3 days after surgery and he could be so close, just up one floor in the NICU. I'm thankful that this hospital was just 15 minutes from our home, so we could visit him everyday... and many nights too.
I hated this place on many days... but not because of what was happening, or how Max was treated, or his level of care... just because it wasn't home and I wanted Max here. OPR NICU saved Max and got him home to us. That's a debt we can never repay.
Oscillator:
I hated this noisy, huge, ventilator. When Max went on it, it delayed my chance to hold him for the first time, I was so bulky I could barely fit in the room next to him, and it was loud, so he had an ear muff to protect his hearing... but it saved him, and helped his lungs, while he was waiting for his PDA surgery, it kept Max alive.
Oxygen:
Glad we didn't have to come home with it... but glad Max had it for all those weeks, when he couldn't breathe on his own.
Ostomy bags:
They stink, they are messy, they are painful, they are bulky, they are ugly, they don't fit right on a 4 pound baby, no one knows how to do them right, I spent DAYS learning all the tricks and it took 30-45 minutes to get it done right.. but I changed those bags and changed some more, and I would have changed them at home if we needed... because they allowed Max to poop outside his body. When that bag will filling, it meant his bowels were working and that meant he was closer to survival. I hate ostomy bags. I hope I NEVER NEVER EVER have to change one again... but I'll take them any day over the alternative... which was losing Max.
I'm thankful that when I asked about my options, Dr. Arroyo told me to deliver here. It was because of the NICU, and at that time, we didn't even need it. But we would...
I am thankful that Max was born in a hospital where I would spend my first 3 days after surgery and he could be so close, just up one floor in the NICU. I'm thankful that this hospital was just 15 minutes from our home, so we could visit him everyday... and many nights too.
I hated this place on many days... but not because of what was happening, or how Max was treated, or his level of care... just because it wasn't home and I wanted Max here. OPR NICU saved Max and got him home to us. That's a debt we can never repay.
Oscillator:
I hated this noisy, huge, ventilator. When Max went on it, it delayed my chance to hold him for the first time, I was so bulky I could barely fit in the room next to him, and it was loud, so he had an ear muff to protect his hearing... but it saved him, and helped his lungs, while he was waiting for his PDA surgery, it kept Max alive.
Oxygen:
Glad we didn't have to come home with it... but glad Max had it for all those weeks, when he couldn't breathe on his own.
Ostomy bags:
They stink, they are messy, they are painful, they are bulky, they are ugly, they don't fit right on a 4 pound baby, no one knows how to do them right, I spent DAYS learning all the tricks and it took 30-45 minutes to get it done right.. but I changed those bags and changed some more, and I would have changed them at home if we needed... because they allowed Max to poop outside his body. When that bag will filling, it meant his bowels were working and that meant he was closer to survival. I hate ostomy bags. I hope I NEVER NEVER EVER have to change one again... but I'll take them any day over the alternative... which was losing Max.
Thanks by the Letters: N
Nurses:
So many to thank, I'm trying to hit our primary nurses individually... but there are others who were so gracious and kind, Joe, Jenna, Angelica, Sara, Mary (who got us through the ostomy reversal surgery), Jennifer, Ashley, Amy overnight and Amy day side, Larry (who got us through through PDA surgery), Diane, Valerie (who was Max's favorite until he nearly ran her ragged!!! and then have ran Charlotte ragged instead) Nurses, nurses, nurses, thank you for all that you do and for treating our whole family, not just Max.
Nurse Practitioners:
Honestly, I didn't understand what a nurse practitioner really was, except that I sometimes saw one in the OB's office, until I was pregnant, then you always get a doctor. But at Overland Park Regional, they basically serve as a liaison between, nurses and patient and the doctors and they seem to do a lot of the grunt work, plus they are on scene all night, when the doctors are not, so they had to deal with a lot of my crazy mommy meltdowns and hysteria. I know I was LOADED with questions. So thanks for trying to answer all of them!
Neighbors:
Wow are we lucky to have them! Thanks to Pete and Cindy for feeding us, mowing for us, taking care of the dogs and offering to take our kids in the middle of the night! Thanks to Michelle for feeding, cleaning our house, making beds, doing laundry, taking care of the dogs, etc... Thanks to the Drents for praying for us and offering to help with the kids, to Mark and Janie so many I can't even remember everything you all have done!
N-Trainer:
Thanks for helping Max learn to suck, swallow and breathe, in that order...
Nicole:
My "N" thanks could never be complete without our wonderful milk donor, Nicole.
Thank you for being so selfless. Thank you for thinking of others when you had every right to curl up in a ball and just focus on yourself and your loss. Thank you for giving us your milk, and for giving Max the chance to heal and grow. Thank you for loving him and holding him and for not shying away from him when he was so swollen and bloated and bloody and connected to all the wires and tubes and really, a baby only a mother could love. Thank you for smiling and touching him that first day. It meant so much to me to have another mom who was not afraid of him and who found him as special and cute as I did. You are a wonderful special woman. We are so thrilled that you're expecting another baby girl! She will be blessed to have you as her mommy.
So many to thank, I'm trying to hit our primary nurses individually... but there are others who were so gracious and kind, Joe, Jenna, Angelica, Sara, Mary (who got us through the ostomy reversal surgery), Jennifer, Ashley, Amy overnight and Amy day side, Larry (who got us through through PDA surgery), Diane, Valerie (who was Max's favorite until he nearly ran her ragged!!! and then have ran Charlotte ragged instead) Nurses, nurses, nurses, thank you for all that you do and for treating our whole family, not just Max.
Nurse Practitioners:
Honestly, I didn't understand what a nurse practitioner really was, except that I sometimes saw one in the OB's office, until I was pregnant, then you always get a doctor. But at Overland Park Regional, they basically serve as a liaison between, nurses and patient and the doctors and they seem to do a lot of the grunt work, plus they are on scene all night, when the doctors are not, so they had to deal with a lot of my crazy mommy meltdowns and hysteria. I know I was LOADED with questions. So thanks for trying to answer all of them!
Neighbors:
Wow are we lucky to have them! Thanks to Pete and Cindy for feeding us, mowing for us, taking care of the dogs and offering to take our kids in the middle of the night! Thanks to Michelle for feeding, cleaning our house, making beds, doing laundry, taking care of the dogs, etc... Thanks to the Drents for praying for us and offering to help with the kids, to Mark and Janie so many I can't even remember everything you all have done!
N-Trainer:
Thanks for helping Max learn to suck, swallow and breathe, in that order...
Nicole:
My "N" thanks could never be complete without our wonderful milk donor, Nicole.
Thank you for being so selfless. Thank you for thinking of others when you had every right to curl up in a ball and just focus on yourself and your loss. Thank you for giving us your milk, and for giving Max the chance to heal and grow. Thank you for loving him and holding him and for not shying away from him when he was so swollen and bloated and bloody and connected to all the wires and tubes and really, a baby only a mother could love. Thank you for smiling and touching him that first day. It meant so much to me to have another mom who was not afraid of him and who found him as special and cute as I did. You are a wonderful special woman. We are so thrilled that you're expecting another baby girl! She will be blessed to have you as her mommy.
Saturday, November 13, 2010
Thanks by the Letters: M
Michelle:
What kind of neighbor cleans your house, makes bed, does laundry, prepares dinners, leaves meals on the table with flowers, and then comes back to do it again a week later? MINE! Our wonderful back door neighbor, learned what was going on with us, and jumped in to help. She would let the dogs out to play and run during those LOOOONG days in their kennels. With a husband and 3 boys of her own to juggle... Michelle was really a wonderful help, when we needed it most!
Meals:
Thanks to our friends, neighbors and family who brought meals, bought meals and fed my family for so long! Troy was simply amazed when my friend Becky, from elementary school sent a meal... the same goes for my friends Christy, Michelle and Marcy... we've known one another since we were little girls.... Who knew so many people would come out and help us in such a wonderful way!? It was great to come home and have a dinner other than McDonalds or pizza every evening. We were able to catch up with the kids, have some normal family routine time and get them to bed with healthy food in their tummies. You have no idea what a blessing this really was!
Margaret Meier:
She's the Director of Nursing for the NICU and she really helped me to advocate for Max. She helped to set up the primary nursing care to give him some consistency and she let me know each week, who would be with him. It helped me to feel like things were under control, so I could relinquish some control and go home to sleep! She helped find additional resources when his was suffering, because of his ostomy bag and infection, etc... Margaret is a mom herself, and she understood that I never stopped worrying or pushing to make sure he was getting the very best of everything. Thanks Margaret for letting me push the limits when it came to Max and his care. You and your nurses were wonderful!
MRI:
We are so grateful for that final MRI. Before a NICU baby leaves the hospital, they have an MRI of the brain. Max had a small brain bleed in his early weeks. The MRI showed us that bleed had completely resolved, that his brain appeared to be normal at this point. It's not a guarantee, but a great sign that he's on the road to developing normally.
Morgan:
My little friend. I know Morgan from our former lives in non-profit work. I've shared hand-me-downs with her for Greyson, who is younger than Alex, and we've shared coffee. But when Max was born, Morgan was my first line of defense. I called her from the hospital and she was up there the next day. Morgan is also a NICU mom. She came back to that NICU, for the first time to help us. She brought a whole folder of information which Troy brought to me on that first full day. She told us how to get started on this journey, what to expect, and how to survive! That folder was our survival guide starting off. I still have it, crammed full of information and lists and more to keep us going.
Morgan had to go through a bit of PTSD herself to come back to the NICU. But she did it, bringing me coffee, and meals and helping me navigate things when I was so completely lost in all the chaos.
Morgan came through again when we needed breast milk. She was actually our first milk donor. When we talked about Max's need for breast milk and my dwindling supply she offered to pump for Max. She was weaning Greyson, and would store the extra milk for us. It's what got me started investigating donor milk, what was safe, milk banks, and eventually we found Nicole. We used Nicole's milk first, because it was from a newborn mommy. Both Morgan and Nicole went through all the lab tests ordered by the NICU to make sure their milk was safe. Once Nicole's supply of milk was gone, we used Morgans to help finish off Max's NICU stay. It's a gift that helped Max survive and grow strong and healthy so he could come home. We couldn't ask for anything more.
We continue to share hand-me-downs with Morgan, back and forth now, between 3 boys ( Alex, Greyson, Max) and soon, Morgan will be adding another baby... I wonder if we'll share again???
What kind of neighbor cleans your house, makes bed, does laundry, prepares dinners, leaves meals on the table with flowers, and then comes back to do it again a week later? MINE! Our wonderful back door neighbor, learned what was going on with us, and jumped in to help. She would let the dogs out to play and run during those LOOOONG days in their kennels. With a husband and 3 boys of her own to juggle... Michelle was really a wonderful help, when we needed it most!
Meals:
Thanks to our friends, neighbors and family who brought meals, bought meals and fed my family for so long! Troy was simply amazed when my friend Becky, from elementary school sent a meal... the same goes for my friends Christy, Michelle and Marcy... we've known one another since we were little girls.... Who knew so many people would come out and help us in such a wonderful way!? It was great to come home and have a dinner other than McDonalds or pizza every evening. We were able to catch up with the kids, have some normal family routine time and get them to bed with healthy food in their tummies. You have no idea what a blessing this really was!
Margaret Meier:
She's the Director of Nursing for the NICU and she really helped me to advocate for Max. She helped to set up the primary nursing care to give him some consistency and she let me know each week, who would be with him. It helped me to feel like things were under control, so I could relinquish some control and go home to sleep! She helped find additional resources when his was suffering, because of his ostomy bag and infection, etc... Margaret is a mom herself, and she understood that I never stopped worrying or pushing to make sure he was getting the very best of everything. Thanks Margaret for letting me push the limits when it came to Max and his care. You and your nurses were wonderful!
MRI:
We are so grateful for that final MRI. Before a NICU baby leaves the hospital, they have an MRI of the brain. Max had a small brain bleed in his early weeks. The MRI showed us that bleed had completely resolved, that his brain appeared to be normal at this point. It's not a guarantee, but a great sign that he's on the road to developing normally.
Morgan:
My little friend. I know Morgan from our former lives in non-profit work. I've shared hand-me-downs with her for Greyson, who is younger than Alex, and we've shared coffee. But when Max was born, Morgan was my first line of defense. I called her from the hospital and she was up there the next day. Morgan is also a NICU mom. She came back to that NICU, for the first time to help us. She brought a whole folder of information which Troy brought to me on that first full day. She told us how to get started on this journey, what to expect, and how to survive! That folder was our survival guide starting off. I still have it, crammed full of information and lists and more to keep us going.
Morgan had to go through a bit of PTSD herself to come back to the NICU. But she did it, bringing me coffee, and meals and helping me navigate things when I was so completely lost in all the chaos.
Morgan came through again when we needed breast milk. She was actually our first milk donor. When we talked about Max's need for breast milk and my dwindling supply she offered to pump for Max. She was weaning Greyson, and would store the extra milk for us. It's what got me started investigating donor milk, what was safe, milk banks, and eventually we found Nicole. We used Nicole's milk first, because it was from a newborn mommy. Both Morgan and Nicole went through all the lab tests ordered by the NICU to make sure their milk was safe. Once Nicole's supply of milk was gone, we used Morgans to help finish off Max's NICU stay. It's a gift that helped Max survive and grow strong and healthy so he could come home. We couldn't ask for anything more.
We continue to share hand-me-downs with Morgan, back and forth now, between 3 boys ( Alex, Greyson, Max) and soon, Morgan will be adding another baby... I wonder if we'll share again???
Thanks by the Letters: L
Okay, so I'm late getting this one posted, but we're having a sleepover so and extra kid in the herd has slowed me up a bit...
Lipids:
Love those little plump cheeks my Max has. They're totally courtesy of the lipids. Every day, while he was on IV nutrition, he received a tube of white fat, lipids to help his growth. Lucky for us, those lipids deposit in certain places, including the cheeks. He still has these little balls, almost like a firm collagen implant, which make his smile even more adorable. I'm thankful for those lipids, which helped him grow for all the weeks when he couldn't eat.
Lasix:
While this wonder drug did leach the calcium from his little bones, it also helped shed all that excess fluid which had his body swelled up like an over-ripe tomato! We were grateful to have it for so many weeks.
Laura:
Our wonderful Laura. What would we have done without her. As soon as my water broke, I called Troy, and then I called her. We dropped the kids with her on our way to the hospital and knew it might be awhile before I saw them again. She brought them up, just 2 days later, when their baby brother was born. She was the first person, other than my parents to see Max and see just how tiny he was. She kept the kids for most of the time that Max was in the NICU. She literally kept Alex, every day. She organized meals, and gift cards and more to help us when things were so crazy, and she let me cry. Because you sometimes can't cry with your husband, when he's going through it too... she'd let me vent and tell me how strong we were and how strong he was and how my other two kids were doing okay. They were. The thrived with Laura and her husband and their 4 kids. It's like their second family over there, and we're lucky to have them as our friends. You truly learn who you can count on during times like this.... and we should have known we could always count on our Laura!
Lilli:
She's Max's guardian angel. We felt it from the moment who moved into her room in the NICU, received breast milk that should have been hers, and learned the story of how much she and Max had in common. It still hurts, knowing that Lilli survived so much in those short, then weeks of her life.... but couldn't survive NEC. It's a reminder to me, every day of how lucky we are that Max did make it home.
Her little life may have been brief. But it made a huge impact on us! Lilli helped save Max. She gave us the opportunity to help him when we couldn't do it on our own and we are so blessed that she was born. Someday, Max will know all about Lilli. He'll see her pictures and know how she helped him. Her life was a gift that we will forever be grateful for.
Lipids:
Love those little plump cheeks my Max has. They're totally courtesy of the lipids. Every day, while he was on IV nutrition, he received a tube of white fat, lipids to help his growth. Lucky for us, those lipids deposit in certain places, including the cheeks. He still has these little balls, almost like a firm collagen implant, which make his smile even more adorable. I'm thankful for those lipids, which helped him grow for all the weeks when he couldn't eat.
Lasix:
While this wonder drug did leach the calcium from his little bones, it also helped shed all that excess fluid which had his body swelled up like an over-ripe tomato! We were grateful to have it for so many weeks.
Laura:
Our wonderful Laura. What would we have done without her. As soon as my water broke, I called Troy, and then I called her. We dropped the kids with her on our way to the hospital and knew it might be awhile before I saw them again. She brought them up, just 2 days later, when their baby brother was born. She was the first person, other than my parents to see Max and see just how tiny he was. She kept the kids for most of the time that Max was in the NICU. She literally kept Alex, every day. She organized meals, and gift cards and more to help us when things were so crazy, and she let me cry. Because you sometimes can't cry with your husband, when he's going through it too... she'd let me vent and tell me how strong we were and how strong he was and how my other two kids were doing okay. They were. The thrived with Laura and her husband and their 4 kids. It's like their second family over there, and we're lucky to have them as our friends. You truly learn who you can count on during times like this.... and we should have known we could always count on our Laura!
Lilli:
She's Max's guardian angel. We felt it from the moment who moved into her room in the NICU, received breast milk that should have been hers, and learned the story of how much she and Max had in common. It still hurts, knowing that Lilli survived so much in those short, then weeks of her life.... but couldn't survive NEC. It's a reminder to me, every day of how lucky we are that Max did make it home.Her little life may have been brief. But it made a huge impact on us! Lilli helped save Max. She gave us the opportunity to help him when we couldn't do it on our own and we are so blessed that she was born. Someday, Max will know all about Lilli. He'll see her pictures and know how she helped him. Her life was a gift that we will forever be grateful for.
Thursday, November 11, 2010
Thanks by the Letters: K
Lots of friends to be thankful for today.
Kevin & Kate:
Those Boetchers are wonderful folks. Not only did Kate volunteer to shuttle Ella to and from her dance classes, every week, for 4 months after Max was born... they took her in on competition weekend, kept her for 3 days, did hair, make-up, and and to her to and from the rehearsals, photos and the competitions and recital on time. All we had to do was drive over from the NICU,
and see our girl dance. Ella loves dancing. It makes her happy. She's the little girl who dances and skips through Target, skips around the backyard with an umbrella, it's her escape. I was ready to pull her out of her class, the competition, everything, because I knew I could not get away from the hospital to get her everywhere she needed to be, etc... Kate immediately offered to pick her up, drop her off, and take care of everything else. Ella had a wonderful time playing and doing all her dance stuff with Mary... and that dance continued to be her escape during some very difficult days.
Kimmie:
Our timing is great! We were pregnant together again! , (This is one of the only pics of us in our pregnant splendor... outside preschool of course, watching Ella and Sophia play on the big hill.) This time one of us planned it and was
thrilled, the other was shocked and ready to castrate her husband at first... but that's another story. We were due 4 months apart, sharing maternity clothes back and forth, excited that we were both having boys, they'd be the same age, able to go to preschool together, be buddies, etc... Kimmie had just given birth and I was trying to help her with shuttling Sophie around to preschool, etc... when my water broke. This isn't how it was supposed to happen.
Even with a newborn and two girls of her own, she took over planning meals for us from the preschool mommies, shuttling Ella around after preschool, and talking me through almost every crisis at the hospital while juggling breastfeeding, no sleep and multiple other problems of her own. Her house is the place where my kids are happiest. They'll tell you Miss Kimmie is the best mommy ever... yes she ranks higher than me. She has juice boxes and makes animal shaped pancakes. So I knew they were happy and having fun when they were with her. That made being away with Max, so much easier. Max and Jack are sure to be best buddies... I'm sure Max will be telling me that Miss Kimmie is the best Mommy too... just wait!
Kristi:
My very best friend since I was 6 years old. We've been through everything in our lives together it seems. I never needed her more than I did this year. I called her when my water broke and I think Troy called her when Max was born. I remember calling her as soon as we came home from the hospital, and having my first breakdown. I wept and sobbed and shook and screamed and it's the kind of thing you can only do with your best friend. My kids were at Laura's. Troy was picking up medicine or supplies or something, and I was supposed to take a nap. But I had to be able to say the things that I was thinking, the things I feared. She asked what I needed and I needed her. I told her I wanted her to come and I wanted her to see him. I wanted her to know
what I was going through and to know Max, in case he didn't survive. She was on a plane 2 days later. That first weekend after we came home, she was with us. She sat with Max and me for hours in the NICU. She talked to the nurses about what was happening with him, let me talk about everything that I was thinking and feeling and she'd come back home and send Troy and I to relax while she'd read to Ella and Alex or play with them or whatever they wanted to do. She did those best friend things, that make it like you don't have a house guest, you have a friend, someone who is there to help you... and she did help me so much.
Kevin & Kate:
Those Boetchers are wonderful folks. Not only did Kate volunteer to shuttle Ella to and from her dance classes, every week, for 4 months after Max was born... they took her in on competition weekend, kept her for 3 days, did hair, make-up, and and to her to and from the rehearsals, photos and the competitions and recital on time. All we had to do was drive over from the NICU,
and see our girl dance. Ella loves dancing. It makes her happy. She's the little girl who dances and skips through Target, skips around the backyard with an umbrella, it's her escape. I was ready to pull her out of her class, the competition, everything, because I knew I could not get away from the hospital to get her everywhere she needed to be, etc... Kate immediately offered to pick her up, drop her off, and take care of everything else. Ella had a wonderful time playing and doing all her dance stuff with Mary... and that dance continued to be her escape during some very difficult days.Kimmie:
Our timing is great! We were pregnant together again! , (This is one of the only pics of us in our pregnant splendor... outside preschool of course, watching Ella and Sophia play on the big hill.) This time one of us planned it and was
thrilled, the other was shocked and ready to castrate her husband at first... but that's another story. We were due 4 months apart, sharing maternity clothes back and forth, excited that we were both having boys, they'd be the same age, able to go to preschool together, be buddies, etc... Kimmie had just given birth and I was trying to help her with shuttling Sophie around to preschool, etc... when my water broke. This isn't how it was supposed to happen.Even with a newborn and two girls of her own, she took over planning meals for us from the preschool mommies, shuttling Ella around after preschool, and talking me through almost every crisis at the hospital while juggling breastfeeding, no sleep and multiple other problems of her own. Her house is the place where my kids are happiest. They'll tell you Miss Kimmie is the best mommy ever... yes she ranks higher than me. She has juice boxes and makes animal shaped pancakes. So I knew they were happy and having fun when they were with her. That made being away with Max, so much easier. Max and Jack are sure to be best buddies... I'm sure Max will be telling me that Miss Kimmie is the best Mommy too... just wait!
Kristi:
My very best friend since I was 6 years old. We've been through everything in our lives together it seems. I never needed her more than I did this year. I called her when my water broke and I think Troy called her when Max was born. I remember calling her as soon as we came home from the hospital, and having my first breakdown. I wept and sobbed and shook and screamed and it's the kind of thing you can only do with your best friend. My kids were at Laura's. Troy was picking up medicine or supplies or something, and I was supposed to take a nap. But I had to be able to say the things that I was thinking, the things I feared. She asked what I needed and I needed her. I told her I wanted her to come and I wanted her to see him. I wanted her to know
what I was going through and to know Max, in case he didn't survive. She was on a plane 2 days later. That first weekend after we came home, she was with us. She sat with Max and me for hours in the NICU. She talked to the nurses about what was happening with him, let me talk about everything that I was thinking and feeling and she'd come back home and send Troy and I to relax while she'd read to Ella and Alex or play with them or whatever they wanted to do. She did those best friend things, that make it like you don't have a house guest, you have a friend, someone who is there to help you... and she did help me so much.
Wednesday, November 10, 2010
Thanks by the Letters: J
It's funny that today is "J" because I'm thinking of my friend Jamie, and she's at the top of my thankful list today as well.
Jamie:
She was one of my first calls, because I knew she'd been there. Jamie had her twin girls early, and her Ella spent almost 6 months in the NICU at Children's so she had lots of NICU experience and advice. Her help, became invaluable and so did her coffee breaks! She would bring me chai, in the middle of the night. Sit with me in the NICU for hours on end and just watch Max sleep and breathe and she'd let me vent my frustration and my sadness and all of it and know that it was okay. She understood this was the long haul. She offered to help in anyway possible, and she meant it. She took Ella in for days at at a time, because Ella kept insisting she was "too old" to go to the babysitter. Jamie would take her swimming, to bible school and to the movies with her 4 girls. She even took Ella to the dentist! Ella felt right at home. She had sleepovers with Miss Jamie and she hated it when I would come to pick her up. I never worried about her when she was with Jamie. Also, as a hospital social worker, she knew the ins-and-outs and helped me navigate all the politics, and be the best advocate I could for Max. The Mommy Mafia is deep and strong. I'm so blessed to have Jamie as one of my mommy friends!
Jobs:
I'm thankful that Troy has one and that they were so understanding during our 4 months with Max in the NICU. I'm thankful that they cared enough for us and our family that they let him take the time off we needed in those first two weeks, that they let him dash out of there at a moment's notice while things remained critical for all those months, that they let him stay in town... within 20 minutes of the hospital, and that they even hired a lawn service to cut our grass and weeds every week, so Troy could maximize his time at the hospital and with our family, when he was done with work for the day.
I'm also, grateful that I don't have a full-time job right now. I could devote my time to Max. Not worry about taking vacation or sick days, not worry about how to juggle yet another thing. God does always have a plan. It was nice to see how my unemployment worked out to be a blessing in disguise!
Jenn:
Nurse Jenn was a hit with us from the early days in the NICU. She helped both Troy and I. She was with Max just after his heart surgery and because of a problem with his isolette, she was the first to let me "sort of" hold Max. His bed was making a nasty burning smell and Jenn decided she wasn't taking any chances, we'd move him to another bed. That's no small task with all the preheating that has to be done, the programming, and then moving all the cords, cables, tubes and a baby, who doesn't really get to be touched much at all. Jenn had everything taken care of and when it was time to move Max, she lifted him up and laid him in my hands.
It lasted for probably 3 minutes, while all the technology was switched over from one bed to another.
I was able to pull him close to me, feel the tiny frailness of his body, and kiss him. For the first time. My lips touched his head and I could smell him, feel his hair, and for the first time, I knew I would never be able to let him go. 
It had been an agonizing week. And even though that time to touch and bond with Max was so quick, it was the first bond I was able to make with him. I will never forget those first moments, with him in my hands.
Jenn was also with us the day Max developed a staph infection in his incision and she caught it so quickly. She kept things from being much, much worse. She was there when we received Max's donor milk. Jenn introduced us to Nicole and Shannon. She let us talk, and cry and grieve together.
Jenn gets it, because like so many others, she is a NICU mommy too. Her son Jameson was a NICU baby and so we share the joys and setback of our boys, even now. We are blessed to have had Jenn as one of Max's primary nurses and our friend.
Jamie:
She was one of my first calls, because I knew she'd been there. Jamie had her twin girls early, and her Ella spent almost 6 months in the NICU at Children's so she had lots of NICU experience and advice. Her help, became invaluable and so did her coffee breaks! She would bring me chai, in the middle of the night. Sit with me in the NICU for hours on end and just watch Max sleep and breathe and she'd let me vent my frustration and my sadness and all of it and know that it was okay. She understood this was the long haul. She offered to help in anyway possible, and she meant it. She took Ella in for days at at a time, because Ella kept insisting she was "too old" to go to the babysitter. Jamie would take her swimming, to bible school and to the movies with her 4 girls. She even took Ella to the dentist! Ella felt right at home. She had sleepovers with Miss Jamie and she hated it when I would come to pick her up. I never worried about her when she was with Jamie. Also, as a hospital social worker, she knew the ins-and-outs and helped me navigate all the politics, and be the best advocate I could for Max. The Mommy Mafia is deep and strong. I'm so blessed to have Jamie as one of my mommy friends!
Jobs:
I'm thankful that Troy has one and that they were so understanding during our 4 months with Max in the NICU. I'm thankful that they cared enough for us and our family that they let him take the time off we needed in those first two weeks, that they let him dash out of there at a moment's notice while things remained critical for all those months, that they let him stay in town... within 20 minutes of the hospital, and that they even hired a lawn service to cut our grass and weeds every week, so Troy could maximize his time at the hospital and with our family, when he was done with work for the day.
I'm also, grateful that I don't have a full-time job right now. I could devote my time to Max. Not worry about taking vacation or sick days, not worry about how to juggle yet another thing. God does always have a plan. It was nice to see how my unemployment worked out to be a blessing in disguise!
Jenn:
Nurse Jenn was a hit with us from the early days in the NICU. She helped both Troy and I. She was with Max just after his heart surgery and because of a problem with his isolette, she was the first to let me "sort of" hold Max. His bed was making a nasty burning smell and Jenn decided she wasn't taking any chances, we'd move him to another bed. That's no small task with all the preheating that has to be done, the programming, and then moving all the cords, cables, tubes and a baby, who doesn't really get to be touched much at all. Jenn had everything taken care of and when it was time to move Max, she lifted him up and laid him in my hands.
It lasted for probably 3 minutes, while all the technology was switched over from one bed to another.
I was able to pull him close to me, feel the tiny frailness of his body, and kiss him. For the first time. My lips touched his head and I could smell him, feel his hair, and for the first time, I knew I would never be able to let him go. 
It had been an agonizing week. And even though that time to touch and bond with Max was so quick, it was the first bond I was able to make with him. I will never forget those first moments, with him in my hands.
Jenn was also with us the day Max developed a staph infection in his incision and she caught it so quickly. She kept things from being much, much worse. She was there when we received Max's donor milk. Jenn introduced us to Nicole and Shannon. She let us talk, and cry and grieve together.
Jenn gets it, because like so many others, she is a NICU mommy too. Her son Jameson was a NICU baby and so we share the joys and setback of our boys, even now. We are blessed to have had Jenn as one of Max's primary nurses and our friend.
Tuesday, November 9, 2010
Thanks by the Letters: I
Insurance:
It's a headache, most of the time. Making sure you're using the right doctors, the right medications, the right forms, etc... but this time around, it's actually been fairly painless. Aside from the HUGE scare that we'd reached Max's lifetime limit... which he will eventually, but not yet.
They actually had an insurance rep in the hospital who coordinated all his care immediately so we knew that they were doing everything he needed and it would be covered. I've received some bills for the items that are part of our deductible, but so far, no hospital or surgery bills whatsoever. It's all just been paid and it shows up online in our explanation of benefits. I'm sure we'll have some hiccups down the road. But I am thankful we have this insurance.
Especially, because it comes from Troy's employer, and I know they must pay dearly for having us on the policy. We pay the premiums for the family, but they provide a group policy which Troy has access to. Without that group policy, Max and I would not have insurance.
It's a headache, most of the time. Making sure you're using the right doctors, the right medications, the right forms, etc... but this time around, it's actually been fairly painless. Aside from the HUGE scare that we'd reached Max's lifetime limit... which he will eventually, but not yet.
They actually had an insurance rep in the hospital who coordinated all his care immediately so we knew that they were doing everything he needed and it would be covered. I've received some bills for the items that are part of our deductible, but so far, no hospital or surgery bills whatsoever. It's all just been paid and it shows up online in our explanation of benefits. I'm sure we'll have some hiccups down the road. But I am thankful we have this insurance.
Especially, because it comes from Troy's employer, and I know they must pay dearly for having us on the policy. We pay the premiums for the family, but they provide a group policy which Troy has access to. Without that group policy, Max and I would not have insurance.
Monday, November 8, 2010
Thanks by the Letters: H
Hot showers!!!!!
These kept me sane and alive during those 123 days in the NICU! I would come leave the hospital, pick up the kids, have dinner, spend time playing or enjoying a movie with the family and then we'd put the kids to bed. Once they were down I escaped to the shower! I would stand their under the scalding hot water, usually as hot as I could get it and just decompress. Sometimes I'd cry, sometimes I'd make my mental list of what was ahead the next day, but as that water trickled down over me... I just let the whole, painful, stressful day wash away.
Hand-me-downs:
Who had time to buy baby clothes?! When Max was born, almost 4 months early, I didn't even have his room painted, let alone clothes. Thank goodness for my friend Morgan and her friend Stephanie, both fellow former NICU moms. They sent preemie boy outfits right away. It was MONTHS before Max could wear clothes anyway, but once he was ready for hats, blankets, jammies, etc... we had them. They're still keeping my stocked, along with my friend Tara and her wonderful sister Keely. Max (and Alex for that matter) have their drawers stocked full and crates full of the next sizes in our basement. (Ella also gets wonderful hand-me-downs from Kate, we love the Emma and Mary cast-offs!!!)
These kept me sane and alive during those 123 days in the NICU! I would come leave the hospital, pick up the kids, have dinner, spend time playing or enjoying a movie with the family and then we'd put the kids to bed. Once they were down I escaped to the shower! I would stand their under the scalding hot water, usually as hot as I could get it and just decompress. Sometimes I'd cry, sometimes I'd make my mental list of what was ahead the next day, but as that water trickled down over me... I just let the whole, painful, stressful day wash away.
Hand-me-downs:
Who had time to buy baby clothes?! When Max was born, almost 4 months early, I didn't even have his room painted, let alone clothes. Thank goodness for my friend Morgan and her friend Stephanie, both fellow former NICU moms. They sent preemie boy outfits right away. It was MONTHS before Max could wear clothes anyway, but once he was ready for hats, blankets, jammies, etc... we had them. They're still keeping my stocked, along with my friend Tara and her wonderful sister Keely. Max (and Alex for that matter) have their drawers stocked full and crates full of the next sizes in our basement. (Ella also gets wonderful hand-me-downs from Kate, we love the Emma and Mary cast-offs!!!)
Sunday, November 7, 2010
Thanks by the Letters: G
Giraffe:
Not the animal... the Giraffe was Max's isolette bed. I guess they named it that because it had a long neck, so the entire top of the thing could come off, like an automatic convertible on a car! The sides dropped down, the two doors on each side opened, it had a temperature control, humidifier, it was like a little space ship! That thing tilted and raised a lowered and rolled and warmed and had an xray slot underneath so he never even had to move! It was where I first saw him, when I was wheeled to his bedside, and where he stayed for more than 2 months. That bed was his first home, and it was also the barrier that kept him warm and safe from the outside world and all the germs that come with it.
Globetrotter:
Again, not like it sounds, this was not stunt basketball player. The Globetrotter is the transport bed that brought Max from the delivery room to the NICU, it's what he rode in for all his trips to surgeries and MRI and his barium enemas, etc... It had an on-board ventilator, monitors, etc... and well, he HATED IT!!!! By the time of his ostomy reversal, he was fighting NOT to go in, kicking and screaming and sweating because he hated it so much, he did the same thing for his hernia surgery, and they DOUBLED his sedation that time around. Max may not have liked going into that little clear, rolling box, but it kept him safe, and warm and brought him back to me after surgery... so at least one of us is thankful.
Gavin:
I love my girlfriends and they really came through for us when Max was born, but I can't miss my friend Kimmie's husband, Gavin, this time around. Perhaps the first hurdle we faced was when Max was just 5 days old and needed emergency surgery. We got the call before the kids were even out of bed that morning. We gave permission over the phone and needed to get there FAST if we even stood a chance of seeing Max before the operation. I was crying, Troy was scrambling to get everyone dressed and into the car and we had no way to get the kids to childcare. I called Kim in a panic and, as we often do, she volunteered her husband. "Gavin is on his way, he'll meet you in the parking lot!" I flew out of that car to Max's room while Troy and Gavin moved the kids from our car to theirs and Troy dashed upstairs too. It was a moment when we truly needed a rescue and Gavin was there for us. It was one of the only times the kids ever saw me cry and Ella said "Mommy I'm scared! What's going to happen to us?"
Once I told her that Mr. Gavin was on the way, everything was fine. Gavin was our knight in a shining Buick that morning!
Not the animal... the Giraffe was Max's isolette bed. I guess they named it that because it had a long neck, so the entire top of the thing could come off, like an automatic convertible on a car! The sides dropped down, the two doors on each side opened, it had a temperature control, humidifier, it was like a little space ship! That thing tilted and raised a lowered and rolled and warmed and had an xray slot underneath so he never even had to move! It was where I first saw him, when I was wheeled to his bedside, and where he stayed for more than 2 months. That bed was his first home, and it was also the barrier that kept him warm and safe from the outside world and all the germs that come with it.
Globetrotter:
Again, not like it sounds, this was not stunt basketball player. The Globetrotter is the transport bed that brought Max from the delivery room to the NICU, it's what he rode in for all his trips to surgeries and MRI and his barium enemas, etc... It had an on-board ventilator, monitors, etc... and well, he HATED IT!!!! By the time of his ostomy reversal, he was fighting NOT to go in, kicking and screaming and sweating because he hated it so much, he did the same thing for his hernia surgery, and they DOUBLED his sedation that time around. Max may not have liked going into that little clear, rolling box, but it kept him safe, and warm and brought him back to me after surgery... so at least one of us is thankful.
Gavin:
I love my girlfriends and they really came through for us when Max was born, but I can't miss my friend Kimmie's husband, Gavin, this time around. Perhaps the first hurdle we faced was when Max was just 5 days old and needed emergency surgery. We got the call before the kids were even out of bed that morning. We gave permission over the phone and needed to get there FAST if we even stood a chance of seeing Max before the operation. I was crying, Troy was scrambling to get everyone dressed and into the car and we had no way to get the kids to childcare. I called Kim in a panic and, as we often do, she volunteered her husband. "Gavin is on his way, he'll meet you in the parking lot!" I flew out of that car to Max's room while Troy and Gavin moved the kids from our car to theirs and Troy dashed upstairs too. It was a moment when we truly needed a rescue and Gavin was there for us. It was one of the only times the kids ever saw me cry and Ella said "Mommy I'm scared! What's going to happen to us?"
Once I told her that Mr. Gavin was on the way, everything was fine. Gavin was our knight in a shining Buick that morning!
Saturday, November 6, 2010
Thanks by the Letters: F
Full Feeds:
As Max guzzles down his bottles, all day and night, it's hard to remember the days when he wasn't able to eat. But he started so slow, with the perforated bowel and IV nutrition for more than 3 months... we thought it would be forever when he would reach that magical milestone of "full feeds" before leaving the hospital. The doctors calculate how much his weights and the calories he needs to grow, and that determines how much they want him to take in each day. Once he started taking food by mouth, we were given a number. First it was 63. Max needed to drink 63 mls, by mouth, from a bottle, every 3 hours, every day, before he could go home. Eventually, that number went up to 70, because the more he ate, the bigger he grew, and the more he needed to eat to maintain and increase that weight.
It literally started with about 3-5 mls at each feeding. (That was like a teaspoon or less.) And they would only allow him to have 1 bottle feeding per day at that point. They in increased by the tiniest increments, every day. After he got to a certain point, they'd let him have 2 bottle feeds per day, and so on, it was weeks, waiting for him to reach full feeds. It was agonizing, for us, and for him. He LOVED to eat. From the minute they put the sponge with breast milk in his mouth for "taste therapy" he was hooked. He gulped down whatever we gave him, whenever we gave it, and usually, he'd get ahead of himself and get choked. He wanted more, we wanted to give him more, but the surgeon told us his bowel, was like a little bottle neck and if things got backed up in that bottle neck, we'd be in trouble again.
So we were patient. Slow and steady was the goal. Just keep increasing, little by little, no steps backward and get to that finish line.
Drop by drop ml by ml, he did it! And then he had to do it again. Because one he reached full feeds, with the stoma and ostomy bag, they did his final bowel surgery, restoring it to one long, single piece or bowel and after recover from that surgery, we started the feeding process again, from square one. This kid was a champ.
He still is. He still loves to eat. He actually screams at the end of almost every bottle, because he wants more! Now he's eating about 150 mls at every feeding. He's 14 lbs and growing every day.His pediatrician expects that by his 9 months visit, he'll finally be on the growth chart for his actual age. Still at the bottom end of the curve, but looking better all the time.
Friends:
There are so many, who have helped us through this difficult time, I hardly know where to start. Friends who are part of our lives and the lives of our children, who jumped in to help us pick up the pieces. Friends who we've had for a lifetime, and didn't expect to need, friends who were barely knew before this who crisis, but can't imagine life with out now that we're through it.
Families:
Thanks, of course, goes to our families. For the prayers, visits, money and more. Thanks for being here, by our sides.
As Max guzzles down his bottles, all day and night, it's hard to remember the days when he wasn't able to eat. But he started so slow, with the perforated bowel and IV nutrition for more than 3 months... we thought it would be forever when he would reach that magical milestone of "full feeds" before leaving the hospital. The doctors calculate how much his weights and the calories he needs to grow, and that determines how much they want him to take in each day. Once he started taking food by mouth, we were given a number. First it was 63. Max needed to drink 63 mls, by mouth, from a bottle, every 3 hours, every day, before he could go home. Eventually, that number went up to 70, because the more he ate, the bigger he grew, and the more he needed to eat to maintain and increase that weight.
It literally started with about 3-5 mls at each feeding. (That was like a teaspoon or less.) And they would only allow him to have 1 bottle feeding per day at that point. They in increased by the tiniest increments, every day. After he got to a certain point, they'd let him have 2 bottle feeds per day, and so on, it was weeks, waiting for him to reach full feeds. It was agonizing, for us, and for him. He LOVED to eat. From the minute they put the sponge with breast milk in his mouth for "taste therapy" he was hooked. He gulped down whatever we gave him, whenever we gave it, and usually, he'd get ahead of himself and get choked. He wanted more, we wanted to give him more, but the surgeon told us his bowel, was like a little bottle neck and if things got backed up in that bottle neck, we'd be in trouble again.
So we were patient. Slow and steady was the goal. Just keep increasing, little by little, no steps backward and get to that finish line.
Drop by drop ml by ml, he did it! And then he had to do it again. Because one he reached full feeds, with the stoma and ostomy bag, they did his final bowel surgery, restoring it to one long, single piece or bowel and after recover from that surgery, we started the feeding process again, from square one. This kid was a champ.
He still is. He still loves to eat. He actually screams at the end of almost every bottle, because he wants more! Now he's eating about 150 mls at every feeding. He's 14 lbs and growing every day.His pediatrician expects that by his 9 months visit, he'll finally be on the growth chart for his actual age. Still at the bottom end of the curve, but looking better all the time.
Friends:
There are so many, who have helped us through this difficult time, I hardly know where to start. Friends who are part of our lives and the lives of our children, who jumped in to help us pick up the pieces. Friends who we've had for a lifetime, and didn't expect to need, friends who were barely knew before this who crisis, but can't imagine life with out now that we're through it.
Families:
Thanks, of course, goes to our families. For the prayers, visits, money and more. Thanks for being here, by our sides.
Friday, November 5, 2010
Thanks by the Letters: E
Elaine:
The wonderful NICU social worker who helped us navigate Social Security, Medicaid, and the crazy roller coaster ride that is the NICU stay. She was wonderful, supportive and affirming!
Esther:
Another of our wonderful primary nurses on the overnight shift. Esther and I honestly, got off to a rough start. Her first night with Max was several weeks into his NICU stay. He was taking a downward turn that day and things on his respiratory just kept getting worse. I knew Max does the gradual creep and then dives off a cliff!!! But Esther had not experienced him before. She was very clinical, very thorough, and I was hysterical. But that didn't last for long.
By night number 2, Esther was an advocate for Max too. She knew he gave warning signs to alert us when something was going wrong. She worried about his comfort and wouldn't hesitate to ask the nurse practitioner or doctor to see him in the middle of the night. And, she'd call me. With any little change, because she knew it alleviated my concerns, to know that she'd keep me up to speed on everything.
Esther made sure Max had Tylenol when she had to give him immunizations. She found a cushion for his bed when she learned his ribs were cracked because she was concerned it might be painful for him to lay on the firm mattress. She convinced the doctors to let him be swaddled, because it was such a comfort to him. It's the little things like this that might seem trivial, but they made such a difference for Max. In all the chaos, she was trying to give him a little bit of rest and comfort and peace. I was so grateful to have Esther by Max's side!
The wonderful NICU social worker who helped us navigate Social Security, Medicaid, and the crazy roller coaster ride that is the NICU stay. She was wonderful, supportive and affirming!
Esther:
Another of our wonderful primary nurses on the overnight shift. Esther and I honestly, got off to a rough start. Her first night with Max was several weeks into his NICU stay. He was taking a downward turn that day and things on his respiratory just kept getting worse. I knew Max does the gradual creep and then dives off a cliff!!! But Esther had not experienced him before. She was very clinical, very thorough, and I was hysterical. But that didn't last for long.
By night number 2, Esther was an advocate for Max too. She knew he gave warning signs to alert us when something was going wrong. She worried about his comfort and wouldn't hesitate to ask the nurse practitioner or doctor to see him in the middle of the night. And, she'd call me. With any little change, because she knew it alleviated my concerns, to know that she'd keep me up to speed on everything.
Esther made sure Max had Tylenol when she had to give him immunizations. She found a cushion for his bed when she learned his ribs were cracked because she was concerned it might be painful for him to lay on the firm mattress. She convinced the doctors to let him be swaddled, because it was such a comfort to him. It's the little things like this that might seem trivial, but they made such a difference for Max. In all the chaos, she was trying to give him a little bit of rest and comfort and peace. I was so grateful to have Esther by Max's side!
Wednesday, November 3, 2010
Thanks by the Letters: D
Okay, this could be a long one, because D is for Doctors.
I've already mentioned my OB, Dr. Errick Arroyo and one of his partners, Dr. Bishop. Now it's time to hit on all of Max's doctors.
I have to start with Dr. Lancaster. He met with us the night I was admitted to the hospital. My water had broken and honestly, we were in shock. We were preparing ourselves for the fact that I might be stuck in that hospital bed for the next 10 weeks and we had 2 other kids at home. Dr. Lancaster came to see us, as a consult... we had no idea what that would mean. He was brutally honest, and terrifying! He told us the baby (who we didn't even have a name for) had a 50% chance of survival at this point. That I was getting steroids to help strengthen the baby's lungs and that we needed at least 72 hours to give the baby a chance. He told us the baby would be in the hospital for MONTHS he told us the baby would be fighting for his life. We cried, and it was at that moment, we knew our lives would never be the same. We didn't make it through those 72 hours, but we got close. Dr. Lancaster was there at Max's delivery and Troy tells me he was the doctor who entubated Max, and Troy went with them to the NICU. He was a our first experience with the NICU that weekend of Max's birth and he was honest, and straight forward, so we'd know what to expect. We had to start somewhere.
Next we met Dr. Hubbard. She was younger and cheery and very mommy friendly. She didn't flinch at my DOZENS of questions and went over things with me countless times until I understood. She let me cry and vent and worry about every little detail with Max. She worried about him and knew how sensitive and unpredictable he was. She would say, " normally I wouldn't be concerned.. but we all know this is Max." When things went south the night of his major bowel surgery, I rushed back up to the NICU to find out what was happening. I was thrilled that she did the same thing. Her words were "I needed to lay hands on him and see him for myself. Now I feel better about how we're treating this." I had the same thought. I felt like she was the doctor who best knew Max. She got him and all his quirks, she would wait to examine him until the nurse was already waking him for a diaper change, she would come back hours later if he was sleeping or content so he could be more comfortable... she really cared for hi and she got me. She understood my hyper-concern. She reassured me that a mommy's intuition is not something that they just cast aside, and whether it was true or not, she made us feel like we were playing a role in helping Max. I think we drove her nuts, but that probably applies to all of the NICU docs. I don't care at this point. I know they see hundreds of families and were are merely a blip on the radar.... but I am grateful to all of them for saving Max's life. Most importantly, she's the doctor who helped us to get the ball rolling for Max and the donor breast milk. She talked to the infectious disease experts, found out what lab tests the donors would need, and when we had the all clear, she made the call to Nicole. It wasn't an easy process and I know it's not something they do on a regular basis.... but her help and persistence helped us to help Max.
Dr. Schooley came next in our NICU rotation. She was more clinical and very thorough. I kept all of the illustrations she made for us. (on the paper towels she refers to as her stationary) They show what was happening with Max's heart, his bowels, and his lungs. She made it all so simple for us to understand. We're lucky, because our first experience with her was when Max was just a week old. We had seen her early in the day for rounds and she wanted to have a cardiologist review his heart defect. That doctor saw Max around 2. Dr. Schooley talked to the cardiac surgeon around 3 and by 4, she told us everyone agreed that Max needed surgery immediately. I burst into tears. I knew what she was going to say before she said it. But I knew this could be a death sentence for Max. He was dying, right before our eyes. His blood pressure was dangerously low and she couldn't help him. Surgery was our only option. I remember her comforting me, and apologizing for making me cry. It just felt wonderful to have a doctor care about us at that point. We were so raw and terrified and lost. This was all too much and she was guiding us through it so skillfully. We came to love Dr. Schooley so much. She was aggressive and yet cautious in her care and Max is as strong as he is now because of it.
Dr. Stapley came to know Max just 6 days after he was born. We were called around 6:30 that morning I was just home from my own hospital stay and Troy and I were getting the two kids up for the day. The nurse told me Max had a complication, and they needed our permission, over the phone for immediate, emergency surgery. Dr. Stapley would do the surgery and we needed to get to the hospital as soon as possible. We scrambled and for the first time, the kids saw me cry. I was hysterical on the way to the NICU, rushing to get to Max before they cut. Hoping it wouldn't be the day we lost him. Dr. Stapley was ready to go and I called from the parking lot. Please let me see him first!!! Dr. Stapley waited while I ran up, and ran to his bedside, leaving Troy in the parking lot to hand over the other 2 kids. I saw him, only briefly, touched his hand. Then Dr. Stapley placed the penrose drain in his abdomen. It was weeks, maybe months later when we saw Dr. Stapley again. This time, he was the "vent geek." (self proclaimed) He would stand and stare and tinker with Max's ventilator. And within a week's time, he had him off the vent and breathing! I knew he was working on it, and when I came in one morning to find him on the CPAP, I was shocked and thrilled. He is the doctor who learned how Max's lungs were working and how to set them free!! If he could only hear Max scream now, he'd know just how well those lungs work!
Dr. Simpson missed much of the joy that is Max, because she was on maternity leave with her own little wonder. But Max didn't let her get out the door with a few tricks! He showed her who was in charge, and kept her guessing. It was great to have another new mommy as one of Max's doctors, because she understood all the juggling of babies and siblings and that mommy panic that just can't be helped. She too met me at the hospital on at least one late night when things just weren't going right with Max. She may be the lucky one, because at least she was able to see Max for his NICU follow up appointment, and even in that short time, he had change so much and grown so much stronger! He was already a different baby than the little boy who'd left the NICU 6 weeks earlier!
Dr. Weatherstone didn't have to endure much of the Robinson clan. We were rarely on her "team" but we did have her as Max's doctor for 2 weekends during his 4 month stay. Then we didn't have her care until Max's final 2 days in the NICU. She is the doctor who finally said those magic words... "he can go home!" She was the unfortunate victim who had to speak with the reporters from FOX 4 and the Kansas City Star when they came to profile Max and Nicole and her gift of milk. She was gracious in helping us get the story out there. I can only hope it will help some other mom down the road...
There were many other doctors along the way, and the surgeons who I'll thank later (waiting for letter "S") .
I can't overlook Dr. Stuppy the pediatrician who has taken over Max's care since we left the hospital. I feel like she gets the fun part, at least she's seeing him as a strong, healthy, happy little guy!!! She was kind enough to come to us, on a weekend, when she was on call. She came to the NICU, to Max's room. She saw him, met us, and patiently answered all our questions about his care once we got him home. We're not new parents, but sometimes it feels like we are, because everything is different with Max. There are more concerns, different time lines, and added care that we never thought about. I'm so glad we found Dr. Stuppy and Pediatric Partners! They have been amazing already....
Dietitian:
Mavis was the lady behind Max's growth and survival. For a kid that didn't eat for 3+ month, he has grown amazingly well, and we have Mavis to thank for that. She would monitor his labs and adjust the IV nutrition he was getting every day. He had a yellow bag, we called it baby Gatorade with all the electrolytes, vitamins, etc... to keep his body functioning. He also had a big syringe of lipids, fats... to help his body gain weight. Those 2 things kept his body alive, until his bowel were FINALLY strong enough to handle real food! She supplemented what he received from the breast milk and eventually, came up with a formula to help strengthen his brittle bones and make him grow! Max was 2 lbs 2 ozs at birth. Now he's well over 13 lbs... Mavis, we're growing a baby! and he's growing like a weed!
Diane:
The therapist who worked with Max everyday for several weeks. She used the n-trainer machine and taught Max to suck, swallow and breathe. SO key for him to eat and do it well!!! He's a pro now!!!
I've already mentioned my OB, Dr. Errick Arroyo and one of his partners, Dr. Bishop. Now it's time to hit on all of Max's doctors.
I have to start with Dr. Lancaster. He met with us the night I was admitted to the hospital. My water had broken and honestly, we were in shock. We were preparing ourselves for the fact that I might be stuck in that hospital bed for the next 10 weeks and we had 2 other kids at home. Dr. Lancaster came to see us, as a consult... we had no idea what that would mean. He was brutally honest, and terrifying! He told us the baby (who we didn't even have a name for) had a 50% chance of survival at this point. That I was getting steroids to help strengthen the baby's lungs and that we needed at least 72 hours to give the baby a chance. He told us the baby would be in the hospital for MONTHS he told us the baby would be fighting for his life. We cried, and it was at that moment, we knew our lives would never be the same. We didn't make it through those 72 hours, but we got close. Dr. Lancaster was there at Max's delivery and Troy tells me he was the doctor who entubated Max, and Troy went with them to the NICU. He was a our first experience with the NICU that weekend of Max's birth and he was honest, and straight forward, so we'd know what to expect. We had to start somewhere.
Next we met Dr. Hubbard. She was younger and cheery and very mommy friendly. She didn't flinch at my DOZENS of questions and went over things with me countless times until I understood. She let me cry and vent and worry about every little detail with Max. She worried about him and knew how sensitive and unpredictable he was. She would say, " normally I wouldn't be concerned.. but we all know this is Max." When things went south the night of his major bowel surgery, I rushed back up to the NICU to find out what was happening. I was thrilled that she did the same thing. Her words were "I needed to lay hands on him and see him for myself. Now I feel better about how we're treating this." I had the same thought. I felt like she was the doctor who best knew Max. She got him and all his quirks, she would wait to examine him until the nurse was already waking him for a diaper change, she would come back hours later if he was sleeping or content so he could be more comfortable... she really cared for hi and she got me. She understood my hyper-concern. She reassured me that a mommy's intuition is not something that they just cast aside, and whether it was true or not, she made us feel like we were playing a role in helping Max. I think we drove her nuts, but that probably applies to all of the NICU docs. I don't care at this point. I know they see hundreds of families and were are merely a blip on the radar.... but I am grateful to all of them for saving Max's life. Most importantly, she's the doctor who helped us to get the ball rolling for Max and the donor breast milk. She talked to the infectious disease experts, found out what lab tests the donors would need, and when we had the all clear, she made the call to Nicole. It wasn't an easy process and I know it's not something they do on a regular basis.... but her help and persistence helped us to help Max.
Dr. Schooley came next in our NICU rotation. She was more clinical and very thorough. I kept all of the illustrations she made for us. (on the paper towels she refers to as her stationary) They show what was happening with Max's heart, his bowels, and his lungs. She made it all so simple for us to understand. We're lucky, because our first experience with her was when Max was just a week old. We had seen her early in the day for rounds and she wanted to have a cardiologist review his heart defect. That doctor saw Max around 2. Dr. Schooley talked to the cardiac surgeon around 3 and by 4, she told us everyone agreed that Max needed surgery immediately. I burst into tears. I knew what she was going to say before she said it. But I knew this could be a death sentence for Max. He was dying, right before our eyes. His blood pressure was dangerously low and she couldn't help him. Surgery was our only option. I remember her comforting me, and apologizing for making me cry. It just felt wonderful to have a doctor care about us at that point. We were so raw and terrified and lost. This was all too much and she was guiding us through it so skillfully. We came to love Dr. Schooley so much. She was aggressive and yet cautious in her care and Max is as strong as he is now because of it.
Dr. Stapley came to know Max just 6 days after he was born. We were called around 6:30 that morning I was just home from my own hospital stay and Troy and I were getting the two kids up for the day. The nurse told me Max had a complication, and they needed our permission, over the phone for immediate, emergency surgery. Dr. Stapley would do the surgery and we needed to get to the hospital as soon as possible. We scrambled and for the first time, the kids saw me cry. I was hysterical on the way to the NICU, rushing to get to Max before they cut. Hoping it wouldn't be the day we lost him. Dr. Stapley was ready to go and I called from the parking lot. Please let me see him first!!! Dr. Stapley waited while I ran up, and ran to his bedside, leaving Troy in the parking lot to hand over the other 2 kids. I saw him, only briefly, touched his hand. Then Dr. Stapley placed the penrose drain in his abdomen. It was weeks, maybe months later when we saw Dr. Stapley again. This time, he was the "vent geek." (self proclaimed) He would stand and stare and tinker with Max's ventilator. And within a week's time, he had him off the vent and breathing! I knew he was working on it, and when I came in one morning to find him on the CPAP, I was shocked and thrilled. He is the doctor who learned how Max's lungs were working and how to set them free!! If he could only hear Max scream now, he'd know just how well those lungs work!
Dr. Simpson missed much of the joy that is Max, because she was on maternity leave with her own little wonder. But Max didn't let her get out the door with a few tricks! He showed her who was in charge, and kept her guessing. It was great to have another new mommy as one of Max's doctors, because she understood all the juggling of babies and siblings and that mommy panic that just can't be helped. She too met me at the hospital on at least one late night when things just weren't going right with Max. She may be the lucky one, because at least she was able to see Max for his NICU follow up appointment, and even in that short time, he had change so much and grown so much stronger! He was already a different baby than the little boy who'd left the NICU 6 weeks earlier!
Dr. Weatherstone didn't have to endure much of the Robinson clan. We were rarely on her "team" but we did have her as Max's doctor for 2 weekends during his 4 month stay. Then we didn't have her care until Max's final 2 days in the NICU. She is the doctor who finally said those magic words... "he can go home!" She was the unfortunate victim who had to speak with the reporters from FOX 4 and the Kansas City Star when they came to profile Max and Nicole and her gift of milk. She was gracious in helping us get the story out there. I can only hope it will help some other mom down the road...
There were many other doctors along the way, and the surgeons who I'll thank later (waiting for letter "S") .
I can't overlook Dr. Stuppy the pediatrician who has taken over Max's care since we left the hospital. I feel like she gets the fun part, at least she's seeing him as a strong, healthy, happy little guy!!! She was kind enough to come to us, on a weekend, when she was on call. She came to the NICU, to Max's room. She saw him, met us, and patiently answered all our questions about his care once we got him home. We're not new parents, but sometimes it feels like we are, because everything is different with Max. There are more concerns, different time lines, and added care that we never thought about. I'm so glad we found Dr. Stuppy and Pediatric Partners! They have been amazing already....
Dietitian:
Mavis was the lady behind Max's growth and survival. For a kid that didn't eat for 3+ month, he has grown amazingly well, and we have Mavis to thank for that. She would monitor his labs and adjust the IV nutrition he was getting every day. He had a yellow bag, we called it baby Gatorade with all the electrolytes, vitamins, etc... to keep his body functioning. He also had a big syringe of lipids, fats... to help his body gain weight. Those 2 things kept his body alive, until his bowel were FINALLY strong enough to handle real food! She supplemented what he received from the breast milk and eventually, came up with a formula to help strengthen his brittle bones and make him grow! Max was 2 lbs 2 ozs at birth. Now he's well over 13 lbs... Mavis, we're growing a baby! and he's growing like a weed!
Diane:
The therapist who worked with Max everyday for several weeks. She used the n-trainer machine and taught Max to suck, swallow and breathe. SO key for him to eat and do it well!!! He's a pro now!!!
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