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.

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.

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!!!)

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!

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.

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!

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!!!