I keep telling people we feel like we are living in The Land of Opposites. The last 6 weeks have been the most joyous and the hardest weeks of your lives. We have never smiled and cried more than we have during this time. For each piece of good news we feel we are met with a piece of bad. Our faith has never been stronger but also we have never asked so many questions.
We started week six with a new sense of hope. We were riding the good news high from the previous week and only had two appointments for the whole week on Tuesday, June 26. We were going to our pediatrician for a weight check and would be meeting with the ENT for the first time to talk about microtia. Joel and I even joked that we knew the ENT would be an easy appointment because we already knew the news that he didn't have an ear. He wasn't going to be able to tell us anything that we didn't know.
Or so we thought.
Tuesday, June 26
10:15am - Weight Check at Peditrician
11:10am - ENT
10:15 am - We got to Dr. P's office for the weight check and carried Nolan down the hallway to set him on the scale. 9lb 9oz. I was sure it wasn't correct. We picked him up, reset the scale, and started again. 9lb 9oz. We were ecstatic. Even the nurse was blown away by his fantastic weight gain. Our tiny tough little guy that should struggle to gain weight was now gaining at an above average pace. We were thanking God for not only the weight gain but putting us in the path of amazing doctors that had already poured themselves into our family.
We have never had to wait more than 5-10 minutes for Dr. P to come in and speak to us during a weight check appointment, however, this day his office was very busy, and as each minute passed we were more anxious about being seen so that we could get to the ENT on time (less than a half-mile away).
10:30 am - Still no Dr.
10:45 am - Still no Dr. but we opened the door to the room thinking that would help.
10:50 am - I went into the hall to let them know we had to leave by 11:00 am to get to our ENT appointment. The nurse came into the room and asked if we could come back after the ENT.
Honestly, we were a bit annoyed, but this had never happened before, and it is amazing how things work out. Having to come back ends up being a HUGE blessing in disguise.
11:10 am - (Okay... enough with the time stamps) We walked through the doors at the ENT. We made it. After waiting six weeks for this appointment, our biggest fear was not being able to make it on time.
While we were sitting in the waiting room, they had 'Finding Nemo' playing on the TV. We have said that Nolan is our little Nemo with his little ear... just like Nemo's little fin <3
We were called back and met with Dr. B (turns out his father is a Microtia surgeon in Chicago). He was very knowledgeable about Microtia and was able to explain a lot to us about his process/involvement in Nolan's care. He would be there for anything that we needed, but we would mostly need to work with an audiologist in Nolan's first few years of life.
He wanted to give Nolan an exam, so we set him on the table. He looked at both ears, his nose, and lastly his mouth. He began asking us a lot of questions about feeding.
Nolan has always been hard to feed. He takes almost an hour to eat, and it is a HARD hour. He spits out milk and won't swallow. He will cry and fight the bottle. It isn't the bonding time that most will tell you about feedings. We assumed it was mostly because of his heart and how quickly he tires when eating. We never really questioned anything in his mouth since we had gotten his tongue tie clipped when he was just a few days old.
The appointment for his ear quickly turned into an appointment for his mouth as Dr. B pointed out that he needed to have his tongue clipped more and he had an extremely tight upper lip tie that needed to be cut also. He told us that getting this done would quickly help his feeding problems!
Round Two - Ding. Ding. Ding. I can't believe that we had to do this again.
We signed another consent and asked all the same questions. Recovery time? How long would it take to heal? The benefits of doing it? Etc. Dr. B made it sound like it was the routine procedure that we had done before. We hated we had to do it but already knew what to expect.
Before he took him back, he mentioned that if there were bleeding, he would need to use silver nitrate but after that, there shouldn't be anymore bleeding. Five minutes later he was back in our arms, but we could already see that this procedure was nothing like the last time.
His face was already swollen. His lips had marks from the silver nitrate, and his mouth was black and silver from where they stopped the bleeding. The clipped areas were ten times the size they were the first time... but again, we were told this was routine.
We were handed a piece of paper home-care and exercises for stretching the incisions sites. We made a six week follow up appointment and headed back to Dr. P's office. We were confused by how much pain our baby boy was in and the condition of his mouth... this is not what we were expecting when we were told about the "routine" procedure. We asked all the questions! How could this be?
Dr. P came into the room thrilled about Nolan's weight gain. We told him we were pleasantly surprised by how much he had gained so quickly but were now worried with the tongue tie procedure if it was going to be a huge setback. Dr. P. asked us to make a bottle so he could see how Nolan was eating and see if the procedure was a quick fix.
Nolan screamed out in pain. After about 5 minutes of trying to get him to eat it was clear he was in too much pain. We gave him Tylenol in the office to help him, but we could see that he was struggling.
Dr. P told us to come back in 2 days for another weight check. He wanted to closely monitor Nolan's progress since he knew his mouth would be very sore. He assured us that even if he did lose weight, it would be okay since he had just gained so much so fast the week prior.
The next two days were challenging. Our sweet Nolan was hardly able to eat and was eating less than half of what he usually was. His lips were blistered from the silver nitrate, and he could only let the milk from the bottle drip into this mouth. If he sucked at all, he would scream out in pain and then stop eating. There were multiple feedings that we gave him milk through a syringe to get some calories in him.
On Thursday's weight check he had lost 4 oz. This was a hard pill to swallow because we had been doing so well. We had made it our full-time job (literally 8 hours a day) to feed Nolan and make sure he was gaining. We were so upset to see that he had lost.
Dr. P asked that we come back on Monday to ensure that Nolan was able to start eating over the weekend.
The weekend came and went, and Nolan's feedings were getting slightly easier. He was finally starting to get close to the amount he was eating before the procedure. The one thing that didn't change was how hard it was to feed him. But now it was almost harder. He didn't know how to suck correctly and would spill milk everywhere trying to latch on. Some feedings were great, and others were awful, but there were no real consistent improvements happening.
At Monday's weight check he had gained back 5 oz and was not 9lb 10oz. We were thrilled. Even though it was still HARD to feed, he was gaining again, and that was the most important thing to us.
We were cleared to come back the following Tuesday. Eight whole days without a weight check. We were excited but also nervous based on the feedings we were having. We knew we had to do something to help our sweet boy.