Week 9 – Two Steps Forward & One Step Back

Normally, this is the week that Andy would travel back to NC for business for a few days and Nicholas and I would spend our days together in the NICU. But, this week Andy stayed in FL which meant Nicholas and I got to spend more time with Andy.

Sunday evening started out on a great note for us. After a day of Nicholas eating and eating and eating, and he being removed from VapoTherm and doing fine on a simple nasal canula, we were downgraded from “Level 3” status or ICU to “Level 2” status or Progressive Care Unit. Progressive Care Unit is also known as “PCN” or the “Feed and Grow” unit. Babies in this unit typically have minimal or no health issues and, for the most part, just need time to learn to be a stronger eater and gain weight. On Sunday evening there was not a space available for us in the actual PCN unit so we physically stayed in the ICU but were no longer needing the care we had received up until this point.

Andy and I spent much of the week with Nicholas helping him learn to eat. Now that he was just on the nasal canula and could eat from a bottle whenever he wanted to, we spent our days (and some nights) with him eating. Nicholas is an eager eater. Every 3 hours, like clockwork, he would begin to get ‘hungry fussy’ and only being held while eating from a bottle would satisfy him. When we would start to feed him, Nicholas would be so excited he would gulp and gulp and gulp his milk and forget to breathe. His machines that monitor his oxygen level and repsiratory & heart rates would begin to sound and nurses would come over to see what all the fuss was about. We began to learn very quickly how to pace Nicholas’ eating. Once he got a few good gulps of milk in his system we would turn down the bottle so the milk wouldn’t be available and he would hopefully stop gulping milk and instead take a big, deep, breath. This process was frustrating. Nicholas didn’t get pacing right off the bat (most babies don’t we’ve come to understand) and when he would struggle to remember to breathe his alarms would sound off and we would not only be dealing with a “Hey, where did the milk go? Why is there no more milk? I’m still hungry – call the waiter, I need seconds.” fussy baby but would also be hearing alarms sounding constantly. After 3 straight days of 10 hours at the hospital working with Nicholas I did threaten to toss the monitors out the window if they weren’t silenced (or was that threat a promise?).

All week long I was growing more and more eager to speak in detail about the remaining tasks and tests we needed to accomplish, along with the timeframe to accomplish everything directly with our team of doctors. Each morning I would wake up with a longer list of “What ifs” and “How abouts” that I wanted to discuss. And each morning Andy would say “Relax. We’ll get there.Just breathe.” (apparently Nicholas and I both needed to remember to breathe.). By Wednesday morning I had decided what truly important questions I wanted to talk with our team of doctors about. I say “truly important” because if you ask Andy questions like “When can Nicholas wear pants and sweaters? Because I have some cute outfits I’d like him to wear before he grows out of them.” are NOT important questions. You say tomAto, I say toma-toe I guess.

I knew the 2 BIG tasks we needed to accomplish before going home were 1) to come off the nasal cannula and 2) to reduce the amount of calorie fortifier (also known as “baby protein shakes”) Nicholas was consuming. I know that some babies do come home on oxygen and, as such, do not ever come off their nasal cannula before coming home. Andy & I were not interested in having Nicholas come home on oxygen if we could avoid it – even if it meant staying a few extra days so Nicholas could catch his breath a bit better. Fortunately for us, when we got to the hospital Wednesday morning, Dr. Singh must have read my mind – he removed the nasal cannula from Nicholas to see how he would handle no oxygen support at all – and he was doing just fine breathing on his own. He did get a bit winded during meal time for a few days following but, overall he was a-ok without any oxygen support (thank GOD). Dr. Singh also began discussing reducing the calorie fortifier from his diet but, as Dr. Sultan has discussed with me before, Nicholas would be going home on an increased calorie diet so we didn’t need to wean all of the fortifier from his diet before discharge. Since Nicholas was still on weighing slightly more than 4 pounds, the doctors wanted him to remain on increased calories at home so he could recoup some of the calories he would lose during his meals while he was still trying to master the art of “breathing while eating”.

By Thursday evening, Nicholas was eating 6 out of 8 of his meals straight out of the bottle (the others were being fed through his NG tube which still sat in his nose). Once Nicholas was able to eat 8 bottles (his entire day of meals) in a row, we could remove the NG tube. The NG tube was the last piece of tubing in his body, period. Once it was removed, there would be no more tubes, nor more IVs, no more PICC lines, no more tape on his face – there would just be Nicholas. Andy & I have only ever seen Nicholas’ face tape and tube free a few times – each time for only a few minutes while they were repairing or replacing the placement of or the tubes themselves. We wanted so badly to remove the NG tube so we could, for the 1st time, sit with our child and just look at his handsome face.

Early Friday morning a spot in PCN became available for Nicholas. He was moved to PCN by the nursing team at 5 AM and was settled in nicely when we arrived later in the morning. He was also up to 6 bottles in a row by 11 AM – if Andy and I could get him to eat 2 more, the feeding tube would come out. By 5 PM – out came the feeding tube- Andy & I were ecstatic. What a great way to celebrate Nicholas being 2 months than by him being tape & tube free.

Our “hey, look, we have a baby with no more tubes and tape!” high was diminished come Saturday morning. Now that Nicholas was tube-free that meant that everything that could have been administered via the tube must now go through his mouth – including medicine. Nicholas had been on a daily dose of vitamins for sometime now but, since we know they taste bad (they’re iron based to help with anemia and smell like iron – a LOT of iron) had been given via his feeding tube. This morning they had to give them through a bottle. And Nicholas HATED it. He absolutely, no doubt about it, HATED it. So much so that he gagged so hard he stopped breathing for a few seconds and his heart rate dropped causing his 1st brady episode in over 2 weeks. And as we can all imagine, after that experience he stopped eating. I would too if I thought I was being served chocolate cake and instead got brussell sprouts. Since he wouldn’t eat, in went the feeding tube.

Andy and I spent the next 2 days trying to gain Nicholas’ trust back and get him to eat again. It was frustrating. So was looking at that feeding tube again. So was hearing all of the monitors alarm when he would get stressed out while eating. I believe in my “I am so tired and so frustrated and so eager to get my child out of the hospital that no matter what you say I will not agree with you. Just stay away and let me feed my child in peace. Oh, and before you go, turn the damn monitors off before I throw them out the window and not apologize for my tantrum”  attitude was experienced by more than  a few nurses. Thank GOD for our care team who had been with us most of the time and didn’t mind my attitude that much. Other nurses who didn’t know me or Andy or our situation so well might not have taken my attitude in stride like Jovita, Tarianne, and Lily did.

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