After 5 weeks in NICU, our baby goes home!

After the swallow study confirmed our baby was silently aspirating with no apparent reason, we entered a waiting game to see if he would outgrow it 2 weeks after. Then he didn't, the second swallow study revealed the same results as the first one. So now it all came down to how can we go home with him aspirating and stay safe. The answer: a gastrostomy feeding tube. However, this also meant that they needed to check if he was silently aspirating any reflux. A 24hr pH probe study revealed he probably was because the reflux was coming high enough and quite frequent. What does all this mean? A Nissen fundoplication was needed to stop the reflux from coming up the esophagus. This type of fundoplication is done by wrapping a portion of the stomach around the esophagus so the reflux can't go up. This also meant our baby would have a big scar on his belly for the rest of his life. We didn't take this lightly and sought second opinions, discussed with doctors and cried a lot before we let the surgeon do this.

Surgery Day: Gastrostomy tube and Nissen fundoplication

Surgery day came April 19, 2013. The night before, we gave our baby his first bath and took pictures of his intact little body before the surgery. He was calm the morning of surgery day, even with his IV on the head since the night before (which took 5 tries). He came out of surgery without complications. It was really hard to see him in pain with his teary eyes, intubated and unable to cry as he was waking up from anesthesia, heartbreaking to say the least. Morphine and sedatives kept him calm for the most part until he could receive a feeding again in 48 hours. He is such a resilient little boy. 
Once the IV was out, he was very awake looking at the toys in the room, responding to every single noise he heard and fussing for attention. He was built up on his feeds to 65 cc, which is around 2 oz., every 3 hours.

A week later, we were sent home with a feeding pump and required supplies to feed and take care of his g-tube and incision site at home.

Car Seat Trial... NICU... Orogastric (OG) Feeding tube

On our baby's 4th day of life, we finally heard word that a certified car seat trial nurse would be coming to see us. She brought a car bed with her to check if the baby's oxygen desaturations would improve while on the car bed vs the car seat. The car bed would allow us get over this hurdle and our baby boy could at least go home. Little known fact: Car beds are usually used on small and/or fragile babies, and because they are usually used for a short period of time, the hospital rents them out. When the specialist arrived, she showed the nurse who attempted to do the test the day before, how to properly do the test. She first tried testing our baby on his carseat but he was a bit fussy, once he calmed down he went to sleep, almost immediately his oxygen levels dropped, and she immediately took him out of the car seat. Next, she setup the car bed on the floor the way it would be placed in the car and proceeded to put our baby in it and buckled him. His oxygen levels dropped again. Ok, now what? We can't go home! Ughh!

Now, things were getting serious. Due to the issues with the car seat and car bed she recommended that our baby be monitored overnight with an apnea monitor and a pulse oximeter to ensure he didn't have sleep apnea or that he was not having other oxygen desaturations episodes at other times as well, without us noticing.

Sleepless Night

My husband and I tried to feed baby boy while trying to keep him in a good position without any alarms going off. We discovered that his oxygen levels would drop from 100% when he was in certain positions, whether he was feeding or not, but what was interesting is that he would be fine lying flat on his back in the crib. The car bed was also flat, and he was not ok in there.

The next day

After multiple oxygen desaturations overnight, the attending pediatrician and residents notified us that they were concerned about aspiration of his milk intake into his lungs. Due to this concern, by the afternoon I was directed not to feed him the bottle anymore and was notified that an IV would be put in place for him to get his nutrition, what?! That would be until a swallow study could be done in the morning. No way, this baby would not be satisfied with just an IV! I was alone at the time they told me about this. This was a red flag. I immediately contacted my social worker, as well as the craniomaxillofacial surgeon for an opinion and to express our concerns on how uncomfortable we were given the concerns for our baby and his care. We felt he needed to be monitored in a NICU or similar environment, not just by standalone machines and his parents in the room waiting for a nurse to come if an alarm went off. We were seriously concerned about our baby boy's well being, and as a result many tears were shed. Our baby's craniomaxillofacial surgeon arrived as nurses tried to put an IV on our baby 4 times. It was then, after he talked to me that he talked to the attending pediatrician expressing our concerns and then talked to a neonatologist in the NICU. They decided as a team that our baby should be in the NICU. Thank goodness! Immediately after we got to the NICU the doctors assessed him, put an OG tube for feedings and took out the IV.