Thanks by the Letters: C

Charlotte:

We know she's Max's favorite nurse, even though she gave him his first immunizations. I think it was actually harder on her than it was on him. I'm getting ahead of myself...

Charlotte was one of Max's first nurses. He was just a week old when we came in on Friday morning to find Charlotte with our boy. We were new to all this and Charlotte was full of answers to all our questions. She helped us to understand what was happening, made sure we were talking to doctors as much as we wanted, and encouraged us to touch and care for him as much as possible.

We knew we loved her then and when I begged and pleaded for primary care nursing for Max, Charlotte was at the top of my list. Number one, because of her experience and ease in caring for Max. She was comfortable with what was happening and that helped. It helped Max to have consistency and calm, and it helped us. He was at ease because she was slow and gentle and patient with him and his very sensitive needs. She was slow and calm and took the time to explain things to Mommy and Daddy and this helped us to be more comfortable as well.

The times when I couldn't be with Max, I knew if Charlotte was there, he was in good hands. She loved Max, she picked wonderful little warm hats for him. She snuggled and kissed and loved on him until I could get there. She brought him an extra warmer "his spa and ostomy changing station" for all those weeks when we were stripping him and changing that ostomy bag over and over and over again, sometimes 15 times a day!

Charlotte cared about making Max comfortable and that was one of the few things we could try to control. She was a key player on "Team Max" and honestly, I don't know how we would have made it through those 123 days without her.

Charlotte got me. She understood that I spent 15 years asking questions for a living. That I'm a researcher and I need to know what's happening and why. Troy and I both wanted to know as much as possible about Max and his body and what was happening to him. We needed details and to feel like we were a part of his care and nurturing. We were his advocates, and Charlotte helped explain things so we could make what we felt were the best decisions for his care.

She listened to us scream and me cry, and she went with Max for that critical exploratory bowel surgery when we learned that he did indeed have NEC. Charlotte called from the surgery to let us know things were going well. When they wheeled him away, Charlotte went with him, and that made it just a little easier. She was with him for the day after surgery when things went downhill. Giving him countless injections and medications and trying to keep his traumatized, bloated, shocked body from losing the battle.

And she was with us for the good times, when he would snuggle and breathe and take his first bottle, and have his first poop after surgery....

She was with us through so much, and I don't think you can share all those moments and not bond. I bonded with Charlotte, we all did. She is one of the few things I actually MISS from those NICU days. We all miss you Charlotte. You helped save Max's life and you definitely saved mine!

Colonial (Presbyterian):

This is Ella's preschool and eventually Alex and Max will go there as well... This school and congregation really rallied around us. They prayed for us, cared for our children, came to the hospital weekly sometimes daily to be with us and pray at Max's side. They fed us! For weeks moms organized meals and brought them to us. It meant that my kids were eating something other than McDonald's every night, it gave us some normalcy in a very abnormal time. I knew Ella was in the right place at Colonial. I had no idea what a support system they would become for our entire family. We are so blessed by this wonderful congregation and staff!

CPAP:

That' s the elephant snorkel which Ella just loved to see on Max's face. He hated it, but it got him off the ventilator, and he quickly moved past needing the CPAP as well. It was noisy and uncomfortable, but a step in the right direction, as he began to breathe for himself.






Cafeteria:

Who would have thought anyone would be thankful for hospital food??? But I was. It was decent and I didn't want to leave the hospital. I wanted to spend my days with Max and that cafeteria gave me decent food to eat, quickly, so I could be with him as much as possible. I had SOOOO many turkey burgers and yogurt pretzels..... I may never eat them again.

More C's and one overlooked B:

I don't want to overlook Carrie, our wonderful weekend nurse on Max's primary list. Carrie must have thought we were never around, because weekends were when we tried to spend a little more time with Ella and Alex. She helped Ella to hold her brother for the first time, and she loved on our Max too. I love that some of the nurses seemed to love my boy!

Cherie was one of Max's night nurses, or as I like to call them his girlfriends. Cherie and Betsy, (who should have been in my "B" post, I've already screwed up!) really made me comfortable leaving Max overnight. I would pick the kids up, come home, have dinner and bedtime routine as usual, I'd do laundry, clean, catch up on phone calls, bills, etc... and then Troy and I would check in after midnight and actually sleep! Betsy would read to Max when he woke up in the middle of the night for heaven's sake! I think they may have spoiled him for me! And I loved it!

Thanks by the Letters: B

Big:

I am thankful that Max was big and is getting bigger. At 2 lbs and 2 ozs, he didn't seem big, but he was. He should have been just about a pound and a half for his gestational age. Everyone in the NICU kept asking me if I was sure about my due date, and I was, since we planned this pregnancy. But Max's size has been a help for him since day one. Now, at more than 13 lbs, he's bigger than ever!

Blankets:

We love blankets and blankies! From day one when they gave me a little blanket called a "snoodle" for Max to sleep with , it's been my connection with him. I'd sleep with that snoodle in my shirt and then it was the one thing Max could have in his isolette with him. I couldn't touch him, but he could smell me, and have the comfort of knowing Mommy was close by. The nurses kept that blankie over his eyes and ears to shield him from noise, it was big enough to cover his entire body for months! Now he snuggles with a "blankie tag" all the time. In his car seat, in his swing, or on my lap, he'll curl that blankie up in his hands and snuggle it to his face. This boy LOOOOOVES blankets!

Burping:

This is no longer something we take for granted. Max is a HUGE burper. He has reflux, he's gassy, his little tummy needs relief. But when we were in the hospital, his brittle bones were so delicate, I was reprimanded, for burping him too hard. He had cracked ribs and I could have made things even worse. Now he burps like a champ!

Bones:

Finally, Max's bones are stronger and healthy. It took a few months of eating some high calorie and vitamin filled formula to get him there, but being on IV nutrition for so long, and taking some of the medications to help shed the excess fluid off his body, had leached the calcium from his bones. He had 3 cracked ribs and was very fragile for months. He was more than 6 months old before we even let his Grandma and Papa hold him.

Babysitting:

For everyone who took in my two older children this year, I am so thankful. Not only did you welcome and love them, you made their lives fun during some very difficult months, when we weren't giving them all the attention they needed and deserved. Ella and Alex are blessed by their friends, and by ours. They probably wish the babysitting was back, because life with Mom and Dad is a lot less fun!

Breast milk:

Last, but certainly not least, I am thankful for breast milk. The little that I made to feed Max for his first 10 weeks was so beneficial, but I wasn't alone. We could not have done this without Nicole Hendrix, who lost her babies and kept the breast milk, which she generously donated to Max. Also, my friend Morgan Perry. Who was weaning her own son, and kept pumping milk for Max. Between these two moms, Max had enough breast milk to get him through all 3 bowel surgeries and give his fragile bowels their best chance at survival. NEC is the disease that was destroying his bowels, and with breast milk, he had a 50% better chance of surviving NEC. It's a disease that kills many premature babies, including Nicole's beautiful little Lilli. Breast milk was the gift of life for our Max! (much more on the donors in future posts)

Happy Halloween!!!!

My three little goblins on the night before Halloween.


























Carving pumpkins!

























Our Super Baby Mighty Mr. Max!



















Rockstar and Mermaid ready to hit the haunted trail!

Thanks by the Letters: A

Arroyo:

It all starts with Dr. Arroyo. What can I say about this most wonderful doctor except that I knew I chose him for a reason and we were both so grateful to have him there for Max's delivery. It was a scary morning, fast labor, sick baby, sick mommy and nothing they could do to stop Max from coming out. Dr. Arroyo has been my OB for years, but he hadn't delivered any of my babies. It was EARLY when I went into labor, around 4:30a.m. and by 6:30 Max was almost out. They were rushing to prep me for a c-section to help make delivery less stressful on Max. Dr. Bishop (another partner in the OB practice) had already told me that Dr. Arroyo had written on my chart that he wanted to be called in for the delivery. "I've called Errick, but I don't know if he'll make it in time, this baby is coming!" I was in pain and scared and honestly, I love all the doctors in this practice. Dr. Bishop had delivered Alex, so I wasn't concerned. They ran me down the hall to the operating room and Dr. Arroyo was there waiting for us, in his scrubs, ready to go. I have never been so happy to see a face. He was calming, comforting, and put me at ease. As soon as Max was out, Troy was gone. He sticks to that baby like glue! But I had another couple of hours on that table. Dr. Arroyo talked to me, told me what was happening. He told me there was an infection in my placenta and that was why Max had to come out early, and so quickly. He told me it wasn't my fault and he told me I'd be okay. I always tell my friends choosing an OB is so important and you need to get to know and like ALL the doctors in a practice. I'm so glad we had Dr. Arroyo with us that morning.

Anesthesia:

For keeping Max sedated, and comfortable, and alive during his 5 surgeries. My most vivid memory of the NICU is seeing Max, on the table before his PDA surgery. He was 2 lbs, naked, sedated and still. The anesthesiologist talked to us about the paralytic drug she had given him, about the risks, and about when he would wake up. That was the single hardest moment of my life. Seeing him like that, so tiny and dying. He was dying right before our eyes. His blood pressure was so low. I couldn't stand the thought that I was walking away from him and he might not be alive when I came back. The anesthesiologist pulled everyone out of the operating room, and gave Troy and I a moment with out son. It was the first time we said good bye to Max. It was so wonderful to come back after surgery to see her smiling face and know that he had done extremely well, considering his small size.

Abel:

Our NICU neighbor Dad and my friend. Abel and Jeremy welcomed their baby boy Marco around the same time as Max. They are from New York, and used a surrogate here in Kansas so this was a long way from home for their family! We became neighbors on Cactus Circle in the NICU once Max was moved back to his second room. Since Max had primary nursing care, Marco usually shared the same nurse and Abel and I were often on the same schedule. So we'd talk over coffee in the parent room between feedings, hop on the computer to update our blogs and Facebook pages, and walk downstairs to grab a quick lunch. I was thrilled when Marco went home, but sad too. Abel was a great friend in the NICU and Max and Marco shared many weeks of care together. We hope to have a great play date in NYC with Marco when Max is a little older.

Addilyn:

You might not have heard this name, but Addilyn and Lillian were Nicole and Shannon's twins. Lillian lived for 10 weeks and shared many similar experiences with Max during her NICU stay. Sweet little Addilyn did not survive. She had a heart defect, and died in utero. This is ultimately what led to Nicole going into labor and delivering Lilly so prematurely. We cannot say thanks for Nicole's gift of breast milk without thinking of both of these remarkable little girls. I know they are with Max, and with us always.

A month of Thanksgiving...

So Thanksgiving is just around the corner and we have SOOO much to be thankful for this year. I have been remiss in writing thank you notes to all of you who helped us through this most difficult year yet! I hope you received the birth announcements, which I'm using as my "out" for not getting to the DOZENS of thank you notes and emails I'd have to send.

I wanted to take advantage of this month, to say thanks to all the people who have been there for us, picking us up, taking care of our needs, and helping Max. There are many things about this year, that I'm remembering and thankful for. Some of these things or people, I am thankful to have in my life. Some are moments or memories which I am thankful Max survived.

I'm breaking it down by the letters... A to Z. So starting today, and every day through Thanksgiving, please watch for my "Thanks by the letters" posts. And if I forget to mention you, let me know! I have a rough list on an envelope from the hospital, but it is by no means a complete list of everyone and everything I need to be thankful for! God is good and he has blessed us with 3 beautiful, healthy, happy children. There is nothing I'm more thankful for than Troy and our kids. (we're in our pj's here... Max is extra snuggly when he first wakes up!)

Mr. Buttons

Max may have found his forever friend... we've noticed he's so snuggly with blankets, burp cloths, bibs, etc.. that we knew we needed to find him someone to snuggle.












I stumbled upon this adorable elephant with the belly button and stitches on his tummy and immediately thought of our Mighty Max and all his scars. He latched onto that thing and hasn't let go since!

New tricks...

Not only is Max giggling and smiling and cooing... he is working on sitting up (with support) and his physical therapy sessions focus on rolling over.

Here are just a few pics of him today in the Bumbo seat.... I posted a great video of this on Facebook... sorry, but it's too large for the blog.

Enjoy!