Updated: Jun 19, 2018
One car ride home, two parents with little sleep, one newborn baby, a very excited puppy, four doctors appointments, countless phone calls and a tongue tie would round out the final two days of the week and bring us into the weekend!
Did you know that hospitals just let you leave with your baby? They wheel you down to the car, ask if the car seat is installed facing the rear of the vehicle (yes... they asked this), and then send you on your way. It was a surreal moment pulling out of the parking lot. Just a little over 48 hours ago we were walking in clueless about what would happen in the next two days, and here we were going home with our son.
We got home around 8:15 pm and were exhausted. We knew getting into the house would be a process because our 65lb German Shepherd, Stella, was going to go INSANE when she saw me (remember this is The Adventures of Nolan & Stella). It had been two days since I had seen her and I was equally as excited to get through the door. I came in while Joel and Nolan waited in the garage and I let Stella go nuts. She was barking, crying, and jumping all over me.
Once she calmed down, I got Joel to come in with Nolan. We held the carrier and let Stella sniff him. She was calm but excited and gave him a big kiss on the cheek. Since then Stella won't let Nolan out of her sight. She needs to be in the same room with him and HATES if he is crying. She will even cry too to make sure we know he is upset.
That night we all crashed hard when we got into bed.... for about 3 hours until the next feeding. Overall night 1 was not what I expected. I remember dreaming about crying all night and not knowing what to do. Instead, it was a pretty calm night, and surprisingly we knew exactly what to do. He cried. He ate. He pooped. He slept. About three rounds of this and it was already morning.
May 17, 2018
Upon discharge from the hospital, we were told to follow up with our pediatrician, Dr. P within 24 hours. As soon as I woke up, I called them to make the appointment. I was insistent that we needed to be seen that day. The scheduler on the phone asked me, "Are you sure you need to come today? Is something wrong?" I burst into tears telling her that he only had one ear. She was apologetic (and probably thought I was insane) and told me she would squeeze us in anytime that we could come.
We got the doctor, and step one was getting Nolan weighed. We took him to the scale and set him down. 6lb 0.9oz. That couldn't be right. I told the nurse her scale was wrong. I picked him up and put him down again. 6lb 0.9oz. I got a pit in my stomach. Just 14 hours ago he was weighed at the hospital right before discharge, and he was 7lb 0.2oz. He had lost almost a pound in 14 hours. I knew he was struggling to feed but a pound that quickly!
Dr. P came in and examined Nolan (We were referred to Dr. P by some close friends and he has been a God send to us. He spends time with you. Explains everything to you, and is overly cautious at times (which we love). He is also one of the kindest doctors we have ever met). During his thorough examination of Nolan, we discussed his apparent weight loss, Microtia ear, and his skin tag.
He mentioned that we would need to start to see doctors for all of these things. From my own research on Microtia, I discovered that children with this condition should also see a urologist and cardiologist to ensure that the kidneys and heart were okay. The ears, heart, and kidneys all develop at the same time. Because of this when there is something wrong with one of these organs they always check out the others to rule out any additional abnormalities.
Why didn't the hospital tell us this?
He gave us a lengthy list of referrals and a timeline to be seen by each doctor:
• Ear Plastics - to be seen ASAP to better understand the process for reconstruction (we made an appointment for the following week).
• ENT/Audiology - to be seen ASAP to see if he had hearing on the Microtia side (we got the soonest appointment for June 19.. a full month away).
• Urologist - to be seen ASAP since Nolan was dehydrated in the hospital (we made for two weeks out).
• Cardiologist - not to be seen yet because Dr. P wanted us not to be too overwhelmed with appointments (HA!)
• Genetics - not to be made until all of the above appointments were finished.
Before leaving the doctor, we sat and gave Nolan a bottle in the office. Dr. P wanted to see how much he could get in one feeding. 20 milliliters... less than one ounce. We made an appointment for the following day to come back for a weight check.
The rest of the day and overnight we worked to feed Nolan every two hours. We would wipe him with cold wipes and then blow on him to encourage him to wake up and suck more. We turned the fans on high when feeding him to have even more air blowing on him.
His biggest bottle that day was 28 milliliters (just under one ounce). His smallest was 10 milliliters... roughly two teaspoons. Something was not right.
May 18, 2018
We headed back to the doctor concerned about the tiny amounts that Nolan was eating. Dr. P was out for the day, and we were seeing his PA, Kelly. She was a bright ray of sunshine that morning. She was encouraging, supportive, and reassured us that he was going to be okay.
We headed to the scale to get Nolan weighed. 7lb 0.5oz. Praise God.
While Kelly did a full exam of Nolan, we were deep into a conversation about his feedings. I mentioned it was hard for him to latch and asked if he could be tongue-tied. Kelly looked into his mouth and immediately said "Yes! We need to get this snipped today, and it will instantly help with his feedings!" FINALLY an answer to why he was having trouble eating.
She also felt that he was a bit yellow and wanted to send us downstairs to the lab for a bilirubin test, along with an additional blood test for a PKU test that the hospital did incorrectly. Kelly sent us with what we needed for the two blood tests, and she began calling ENTs to see who would be able to fit us into their schedule that day.
The blood tests took almost an hour for them to get enough blood from his heel prick for what they needed to collect. He was still dehydrated, and it took multiple pricks and a lot of patience from a kind nurse to get what they needed. Nolan was champ and slept the entire time. He was already showing up how tough he really was (Thankfully he passed his bilirubin test and did not need light therapy).
Kelly was able to get us into an ENT in the same building. We finished the blood test and rode the elevator to the 5th Floor. We nervously walked all the way down the hallway to the ENT. The thought of "snipping a tongue-tie" (or snipping anything) on a four day old sounded terrible to us, but we knew it had to be done.
We were put into a room, and Dr. Robb quickly came in to see us. He started explaining the quick procedure and must have known we were about to throw up because he stopped himself and said: "So.. Nolan is your 10th child?" -- We all laughed. I didn't realize the look of terrified new parents was so prevalent on our faces.
Joel and I went into our list of questions.
"How long with the procedure take?" --- 3 minutes
"How long is the recovery time?" -- 10 seconds
"How long until we notice a difference with eating?" - His next bottle
We signed a consent form, wrapped Nolan as tight as we could in a swaddle, and handed him to a nurse. My heart sank as we walked back to the waiting room. We both sat down, cried, and waited.
Within 5 minutes they were calling us back to get him. He did great. And once again he slept the entire time. He was tougher than we were and all of the nurses wanted to keep him to cuddle.
When we got home, we gave him a bottle. 38 milliliters. The next bottle was 42 milliliters, followed by another at 47 milliliters. It worked. He was eating better.
We went into the weekend on a high. WOW -- What a week! We had a son. We fell in love, and we brought him home. We found out more information than we ever thought possible. We rejoiced from good news, and we cried for the unknowns. We were proud new parents with a tiny but mighty and strong baby boy.