So I am going to do a quick recap of our past 2 weeks, 3 days in the hospital to catch everyone up.
It was Friday November 29 and Cohen was born! After spending a few hours in the NICU at the hospital where I delivered, he was not doing the best. He was continuing to have, what the doctors thought, were TET spells. This is very common in patients that have Tetralogy of Fallot where they suddenly lose large amounts of oxygen and sometimes need doctors to intervene to help them get back up to where they need to be. He had a multitude of them when they realized it would be best for him to be transferred to Lurie Children's Hospital. Of course Ryan and I were nervous, because to us this meant he was more "critical" than what we had hoped for, but the doctors insured us it was better to be more cautious.
For three days, while I remained in the hospital recovering, we would take the trip over the bridge 5-7 times/day to visit our little guy in the CCU (Cardiac Care Unit). In the beginning it was pretty tough, since I had just popped out a baby and was still rather weak. We seemed to get into the routine of things though, taking turns visiting him and trying to be there for the rounds in the mornings to hear what the doctors had to say. We had already educated ourselves on his genetic disorder and heart condition but being around these doctors I was constantly having to google different words like: tet spell, tachypnea, etc.
During those three days, he was also beginning to have apneic spells where he would hold his breath for a period of time, and most of the times, the nurses were having to run in his room to stimulate him to breathe again. They also came running in usually with oxygen, ready to use if necessary. Ryan and I witnessed this lovely event one day and it was extremely frightening to watch. They assured us that this was less related to his heart condition and more related to "typical" new born baby stuff. Apparently when you take your baby home from the hospital it is possible for them to do this, but since you don't have your pride and joy hooked up to monitors you are unaware.
Also during this time we were trying desperately to get him to eat by mouth. He was breathing very heavy (one common thing for babies born early, but also could be related to his heart condition). He was breathing so hard that he was only able to take up to 15ml of volume/feeding in 20 minutes. For those of you not familiar to the world of feeding babies, most babies when born take on average around 60mls. Each time we fed him, he would take a few sips and then was exhausted! Because of this he was rapidly losing weight, from the lack of food he was taking, as well as burning so many calories from his heavy breathing. The doctors were beginning to get worried and let us know that in order to leave the hospital... he would need to accomplish these things:
1. Have no apneic spells for 5 days in a row!
2. Gain weight consecutively for 3 days!
By day 3 of being in the hospital, we had already been inundated with a slew of doctors (neonatologists, speech therapists, physical therapists, social workers, pediatric cardiologists, ultrasound techs, nutritionists, etc, etc.) All of them would come in, introduce themselves (I'd forget their name within seconds), check him out, explain what they thought, and then ask us if we had any questions. Of course we had questions....but half of the time we were so exhausted and emotionally drained we could never figure out which questions were appropriate to ask to a particular person :(
When we spoke to the pediatric cardiologists, were were so excited to hear that the type of heart condition he had was actually a lot better of a prognosis than what we had been told originally. Cohen had a VSD (ventricular septal defect) which basically meant he had a hole in his heart that needed to be closed. Lucky for him, it was only 3mm and most patients they operate on range around 10mm. He said there was still a chance he would need surgery, although that chance was much less likely than anticipated and in fact could more likely be needed later on down the road then during infancy. This was the greatest news we had heard since being in the hospital and we figured we would be going home quite soon!
But Cohen had a mind of his own and seemed to really enjoy the nurses and amenities at the hospital. After a few days of not gaining weight, the doctors decided they would be putting in an NG tube (small feeding tube through nose) to help him gain weight temporarily since he was taking so little by mouth. Ryan and I were constantly obsessed with how much he would take, and we would pride ourselves if he took more than his standard 15mls on our night shifts!
Once he got the feeding tube, it seemed it was a constant issue. He was pulling it out, we were having to shove it back in. It got to the point that it was taking 2 hours with 10-15 attempts by experienced nurses to put the tube back in. This was supposed to be a very common procedure, since in fact they would eventually be sending us home with this and we would have to put it in if it were to fall out. But nothing seemed common about this. Each time, Cohen would make this terrible scream and clamp his throat closed sending the tube into his lungs instead of his stomach. One charge nurse said he was one of the "hardest" she has seen at getting an NG tube and that we would need to have ENT come check him out in the morning to see if he had narrow nasal passages. Meanwhile we took him to get a swallow study (where they are able to look at his swallowing to determine if he is doing it correctly and/or if he is aspirating some of his feedings. The xrays reported that in fact he was having some silent aspirations (which are very scary and dangerous) and that at this time it was no longer safe for him to feed by mouth. This was of course heartbreaking for both Ryan and I to hear, because that is something that we felt took away normalcy for us. Babies were supposed to drink from bottles, not from tubes put down their noses. It was something that took a few days to get over and realize that this could be our "new normal" for a bit.
After ENT (Ear, Nose, Throat) checked him out they determined that he looked fine but was very swollen from all of the poking and prodding. They would give him nose drops to help with swelling and we would wait a few days before we tried again. Again it fell out and the nurses took another hour to put it in again. At this point I was so disheartened that I was nervous to even think about bringing this baby home.
Back to our goal, he had accomplished his goal of having no apneic spells for 5 days but on the 6th day he had two again. Doctors were thinking it was due to the fact that he had been poked and prodded so much from putting the ng tube back in and out, that he was losing oxygen intake from his poor swollen nose. At rounds one day it was discussed that he may benefit from putting a g-tube into his stomach (basically a feeding tube but in the stomach instead of his nose). This was a temporary and common surgery that would allow him to still get fed until we could give him time to grow and develop his swallow so he could begin to take things by mouth again. Surgery at 2 weeks old seemed a bit extreme, but ever since the ng tube was put in, it had caused nothing but problems, so we were all for the surgery. Anything at this point to help him gain weight and grow was all we cared about. The only downside to the surgery was that it would prolong our stay in the hospital and would make it very close to us leaving in time for Christmas.
Fast forward after 4 days of waiting for surgery and it is the eve before the surgery and I'm rather nervous. The docs just came in to get consent from me and they discussed the procedure, calling it a very common and routine procedure. Before putting in the g-tube the ENT doctors will scope him to make sure that all of his anatomy in there looks good and that there are no other underlying issues that would cause him to need the g-tube for a longer period of time. We will hope that the surgery goes well and that Cohen can come home very soon so that we can spend our first Christmas as a family of 4 together!!
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