Category: In the NICU

We spent Sunday continuing to feed and gain Nicholas’ trust back at each mealtime. His pacing was getting better but did need support from us occasionally. Since his feeding tube was put back into place – we were back at square 1 on feedings- he had to do 8 bottles in a row again before the feeding tube could be removed. This was honestly frustrating. It wasn’t as if Nicholas hadn’t proven he could eat. He had. He was just now apprehensive to suck down whatever you put in front of him after tasting the vitamins.

When we weren’t feeding Nicholas we were talking with doctors about what our week may or may not look like here. Andy was set to get on an airplane to head back to NC for a few days to take care of some business and we weren’t sure if he should go or not. Andy wanted to be there when Nicholas was discharged and, if that was going to be before Friday, we had to decide whether or not he should fly home. In a conversation I had with both Dr. Sultan and Dr. Singh I asked the question, “If this was your child, would you go?”. They couldn’t answer the question with certainty. It all depended on how quickly Nicholas could pick back up on eating. Drats. It wasn’t the answer we wanted but, it did help us to decide that Andy should go home – if things progressed quicker than anticipated he could hop on an earlier flight back down here.

On Monday morning, after a night of Nicholas not eating for the nurse, Andy and I arrived at the hospital extra early. We wanted to be there when the doctor rounded to discuss what had gone on over the weekend and see where we stood. Dr. Sultan was our doctor this week – I enjoy Dr. Sultan for his common sense, no fluff, present moment approach to neonatal medicine. He isn’t interested in discussing “what ifs” with parents – his response is always “We’ll discuss that if and when we get there.” (I know this because I have asked my fair share of “what if” questions and he always smiles and says “When we get there, we’ll talk about it.”. He reminds me to be present and only focus on 1 thing at a time in Nicholas’ care – a hard but ideal way to deal with Nicholas in this situation – be present and patient.). When we met with Dr. Sultan our nurse Tarianne was present as was the discharge team.

In our talk, Dr. Sultan let us know that Nicholas was going to be sent home on an at-home apnea monitor. Not because he has had apnea in the NICU but because he does have some breathing issues while eating and he felt safest placing him on the machine while we traveled home to NC. Nicholas would be spending many hours in a car seat and he wanted to make sure Nicholas had no issues with breathing that we weren’t aware of so the monitor made sense to him. It wasn’t ideal for Andy & me but, hey, if we got to go home, we will take it. (More on the monitor later).

Since we were going home on the monitor, and had no brain, sight, hearing, or motor skill issues, all we needed to do to go home was (in the words of Dr. Sultan) “Get Nicholas to eat. Let him know what the deal is, get him to eat, and you can go.”. Easy Andy & I thought. (And, really, it was.)

Also, in our meeting with Dr. Sultan on Monday morning, one of the members of the discharge team offered me the opportunity to “reverse nest” at the hospital. Nesting, in the neonatal world, is when they allow the parent(s) to move back into the hospital and stay with their baby in the room for a few nights to acclimate to caring for their child, especially if they are going home on support of any kind (ie oxygen or monitors). Reverse nesting in our case meant that I could move into the hospital and stay in a suite down the hall from Nicholas and go down throughout the day and night to feed and care for him. Dr. Sultan felt it might help him to trust eating quicker and would help expedite our discharge. To that I said “Sign me up. When do I start?”. In 2 hours, they had a suite available for me and by the night I had gone home, gotten some things, and had moved in.

We did decide that Andy should fly home to NC and we would play the week by ear. If he needed to, he could always get on an earlier flight. I spent the next few days working with Nicholas to feed him – day and night. Folks kept asking if I was exhausted. Honestly, I wasn’t. For me, there is something simply wonderful about spending time feeding Nicholas in the middle of the night. 2 AM feedings are some of my favorite times with him. The universe has come to a standstill at 2AM and we get to spend quality time together – just us. Nothing and no one to bother us. With 12 hours of me moving into the nesting suite and being the ONLY person who fed Nicholas he was back in business eating everything we put in front of him.

He & I even figured out a way to eat the vitamins everyday without issues. Hallelujah. The doctors were firm saying “He needs the vitamins. Make him eat them.” I don’t know about other moms out there but, I am uninterested in force feeding my child anything that causes him such stress. Dr. Sultan and I had several discussions about the vitamins. I pointed out that there are children who leave the hospital everyday without the recommended vaccinations because their parents decided, for whatever reason, their children didn’t need the vaccines that the doctors recommended. (This is not a dig at moms who choose to deviate or remove vaccines from their children’s care plans. I choose to vaccinate my child, others do not. My point here is that if children are allowed to leave without a measles vaccine, we shouldn’t be kept in the hospital over a multi-vitamin). I was not going to force feed my child nor was I going to stall his discharge over multi-vitamins. In the grand scheme of things for Nicholas, his eating and gaining weight was, at this point, more important than vitamins. If the taste of vitamins caused him such stress we would either 1) find a different type of vitamin he did like, 2) spread his dosage out throughout the day so he tasted it less, or 3) live without the vitamins until he was a bit older.

Nicholas’ at-home apnea machine was ordered on Monday. On Wednesday there was still no sign of the machine. I begin to grow a bit anxious because we were now eating just fine and all we were waiting on was the apnea machine. Since we are in Florida but live in North Carolina it is very difficult to take home healthcare equipment across state lines these days (thanks, Obamacare). Several companies wouldn’t accommodate our needs even though our health insurance covered the machine in full. It took 5 companies until Thursday at lunchtime to determine we finally had a machine we could take home with us. Even Dr. Sultan was frustrated saying on Thursday morning during rounds “Why are you still here?”.

Now that we knew when our apnea machine would be here and we were eating appropriately Nicholas’ very very very last step to leaving was to pass his car seat test. They do this with all preemies. During the “test” Nicholas was placed in his car seat and was made to stay put for 90 minutes for observation. If he went into any respiratory or heart distress that the monitors would pick up, he would fail. If he failed the 1st test he was allowed to test again in 24 hours. If he failed a second time we would have to get him a car bed – which looks like a cradle strapped to the backseat of the car. I was concerned about his care seat test from the get-go (not to mention I did NOT want a car bed. When asked why I said “A car seat is a small piece of normal. We havent had much normal yet.”). Nicholas had had oxygen saturation issues from birth and would often drop from 88% oxygen saturation to as low as 80%. He would always come back from any de-saturation on his own and fairly quickly. However, according to the rules, if he de-sated to 87% even if only for 2 seconds he would fail. While Nicholas had gotten much stronger breathing on his own, certain activities would cause him to de-sat. I had a feeling he would fail his 1st car seat test. I was right.

While I understood the car seat test rules, I didn’t agree that they were appropriate for Nicholas. Nicholas was being sent home on a monitor to track and alarm us for any breathing issues that the car seat test was testing for. Why were we being failed on  car seat test for the exact things that the monitor we were being sent home on would track? I shared my concerns with the nursing staff and our doctor and they were willing to adjust the test to accommodate appropriately for Nicholas. By Thursday night we had passed our 2nd car seat test with flying colors.We were set to be discharged on Friday. Andy was on notice to fly in early.

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.

On Sunday morning, I started the week with a routine I’m getting used to but can admit I’ll never be comfortable with – Andy packed up and headed back home to NC. At least this time he had company- my cousin Jordan was on the same flight back to NC.

Nicholas started (and ended) the week this week on the CPAP machine. Thankfully though, he was now breathing much, much better than he was the previous week. Watching his small (but growing!!) chest rise and fall with each breath you could tell he was getting stronger at breathing on his own. He was still (and may very well be for the rest of his life) a shallow breather. With Andy’s asthma and my own recent realization through Nicholas’ stay at the NICU that I am a shallow breather as well, Nicholas might just come by his shallow breathing honestly. Nicholas spent the week breathing room air on the CPAP machine, only using the machine to provide pressure support for his lungs.

On Wednesday, Nicholas was visited by the neurology, cardiology, and ophthalmology teams. He had a follow up cranial ultrasound (his 1st was when he was just 5 days old) to see how his brain was developing and to chart any neurological issues that may have developed over the past 7 weeks. The scan, again, returned a negative reading – letting us know his brain was developing without any issues now or in the foreseeable future.

The cardiology team paid us a visit after our primary nurse detected a slight heart murmur on Nicholas earlier in the week. Through an echo cardiogram, we learned that Nicholas has a ASD heart murmur – a type of murmur that will clear up on its own when Nicholas turns 12 weeks old (40 weeks corrected/ at his original due date). In short, if Nicholas would have been born full term, this murmur would have cleared up instantly with his 1st breath in the world. Since he came into the world early, this part of his heart isnt developed yet – but will correct itself. We also learned that Nicholas has an extra blood vessel that runs across one of the aorta valves. When I 1st learned about the extra blood vessel, Dr Lui (one of our neonatologists) was on call and reviewed the echo results for us. He wasn’t sure what to make of the notes on the extra blood vessel  but assured us that our primary doctor that week, Dr. Faisal, would follow up on the notes the next morning and would let us know what to make of the finding. It turns out that the extra blood vessel is just “one of those things” some of us are born with.

Lastly, on Wednesday, Nicholas had his 1st eye exam. His eye exam was much like the eye exams you & I are used to. They dilated his eyes and checked for vascular growth (or lack thereof) and any abnormalities that can come with premature babies. We learned early on that when babies are on oxygen their oxygen saturation levels must be monitored closely because too much or too little saturation can lead to issues with eye development. Nicholas’ eye exam returned a near perfect score or result. (We have learned in the NICU that most tests come with scores in lieu of pass/fail results – and since Andy is such a numbers guy, this is information he asorbs quite easily). After Nicholas’ eye exam he was required to wear his ‘sunglasses’ (black foam eye coverings) for 24 hours. I think it was harder for him to wear the sunglasses than it was to actually endure the eye exam – he absolutely hated them – and showed it by continuously pulling on them (while screaming!) until he got them off (and suddenly, his screaming would stop!).

Speaking of screaming,with Nicholas’ increased lung capacity has come his voice. A voice much like his mama’s in that, when he isn’t happy, he will let you (and everyone within earshot) know. He really found his voice this week. As I sat with him through several “Look how loud I can be!” episodes, the NICU nurses who know him so well kept walking by listening for where the cries were coming from and when they got to where we were sitting would surprisingly ask “Is that really Nicholas? It can’t be”. Oh, but it was.  But it was.

One of Dr. Faisal’s goals this week was for Nicholas to pack on the pounds. In addition to his increased feedings and his ‘baby protein shakes’ Dr Faisal added in fat supplements to his diets. (On a side note, wouldn’t it be nice to have a doctor say to you “Here. Eat more fats. You need it. You deserve it. Eat. Eat. Eat.”?). Nicholas was burning calories learning to breathe and as of right now, has not inherited his mother’s ‘I just looked at that bagel and gained 3 pounds’ metabolism. Dr. Faisal would like Nicholas to gain approximately 1 pound in 1 week – a goal that seemed unlofty at first. Nicholas began the week at 3 pounds, 6 ounces. In the just 7 days that followed, he was up to 4 pounds (having gained 10 ounces!). We know that for the doctors, its a numbers game of determining caloric input versus output, which is a game they are very, very good at. I didn’t think that type of weight gain was possible so quickly but, I am thankful it was. We know that with continued weight gain, the rest of Nicholas’ motor skills, brain and lung development that is necessary to come home will come naturally. Let the weight gain continue!