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.