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!!!