Wednesday, December 29, 2010

How do you measure a year...

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.



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!


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!

2004
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



2006
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.



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...)

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.

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




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!

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!!!