Bella's Birth Story Part Three: The Medical Center

It was a Friday afternoon when we were visiting Bella and talking with the neonatologist when we found out that Bella was going to need to be transferred to the Medical Center. Kallie was with us that day so we had about 45 minutes to make arrangements for her, or else we were going to have to let Bella go on her own and us meet them at the other hospital, and that was NOT happening.



Sweet Sleeping Angel

I put Mike in charge of figuring out where Kallie was going, and getting her there, while I stayed with Bella to get all of the ridiculous amounts of paper work filled out. It was overwhelming being in Bella's room with the current NICU team, the transport team and many nurses all telling you a ton of information. I also had no idea what to expect at the new NICU. One of the nurses told me that she will be with an awesome medical team once we get there, but to be prepared as it is a culture shock compared to Memorial Hermann Memorial City.

Waiting for the transport team to get everything ready

I was also panicking because I knew that the medical center was about an hour away from our house and that was 30 minutes farther than where we already were. I knew that I was not going to be able to be right by her side ALL THE TIME because we had Kallie who was 21 months at the time and Mike had to work too.

Kallie brought her favorite "George" to watch over baby sister

Mike was able to follow in the car and I rode with Bella in the ambulance. I had never been in an ambulance before that day and I hope to never be in one again. Bella was hooked up to all of her equipment and safely strapped inside the incubator, but it just didn't feel right. Once we got to the medical center we were directed upstairs to the 7th floor level III NICU. We were really hoping to be able to go to level II NICU instead so that we could have our own room and be able to have more visitors and so forth. Unfortunately, Bella needed a little bit more attention than level II was able to offer so level III it was. We were not allowed to go back with Bella while they admitted her, we had to wait in the waiting room where we were instructed on the long visiting rules/regulations, informed on the process to visit your child, and given a tour of the Ronald McDonald House (I will explain that in a different post). After about 1 1/2 hours we were finally able to go see Bella again. We were escorted back the long hallway by Bella's transport nurse who was GREAT. She was so sweet to us and understanding. She made jokes to lighten the day and prayed with us before she left. She told us about her son who had growth deficiencies and was on growth hormones and explained to us that we are not alone, we had all the other families that were there, as well as God.

We already had some culture shock just being in the waiting room, but when we walked into where Bella was going to be until she was able to come home, we were more than shocked. There were 8 other babies in her room. There were tons of nurses watching over the babies and visitors for other babies. There was no designated area to sit, they would pull you up a chair if you were going to try and nurse and give you a curtain to try and block off the area. The nurses were different, they did not seem as compassionate. That could have been just me too, as I was already upset at having to bring Bella here.

Bella's note to all the Nurses and Doctors.
"Please Do NOT suction my nares" Thanks, Bella

It was a Friday evening and we REALLY wanted the ENT team to make it to see Bella that day so we did not have to wait through the weekend. (We were under the impression that we would only be there a few days) I remember waiting for several hours with nurses telling us that they were not sure if or when the ENT's were coming and that we could leave and they would call us if they came. Mike and I finally decided to wander down to the cafeteria to see if we could get something to put in our stomachs after this long day. When were walking downstairs we walked right past a group of doctors that were walking briskly with a brief case in their hands. I heard one guy with an accent say that the patient had severe nasal blockage and it was not thought to be Choanal Atresia. At that point I KNEW that was our team of ENT's. We turned right around and followed them upstairs.

The volunteers made Bella a hat :-)

When we got back to Bella's pod, we were instructed to please wait outside in the waiting area as parents/visitors are not allowed to be in the room when any procedures are going on and that they would come get us when it was all over with. (Yes, this is for every child, no parents or visitors are allowed. You are constantly being asked to leave the room for other children's procedures, or when a specialist is coming in to examine a child). We were not able to talk with Bella's ENT's that evening but they left us some information. They were able to scope one side of Bella's nasal passages but were not able to make it down the other and there was severe nasal narrowing. They scheduled an emergency CT scan and would discuss the results with us the next day. That evening we went home and they had not done her CT scan yet. She ended up having the scan early the next morning, and by that afternoon Dr. Yuksel had called us with Bella's diagnosis of Pyriform Aperture Stenosis (CNPAS).

Bella's lips were always chapped because
 she having to use her mouth to breathe.

I don't remember what I was thinking at that moment, but I do remember replying with, "What?" It was different to actually hear a diagnosis rather than a whole bunch of speculations from other nurses and doctors. I remember Dr. Yuksel spelling it for us and saying that we could look it up online, but to be careful about what we read since it can be associated with other issues and that her CT Scan looked pretty good otherwise. (Her adjusted age was still only 37 weeks, so she was not even full term yet.) The first thing we starting doing was research of course. I remember reading about all these horrible things that are associated with CNPAS, such as, brain anomalies, a central incisor (which totally freaked me out), and other serious syndromes and mid line anomalies.

The plan was to watch Bella over the next few days and determine if she needed surgery while she was still in the hospital. Her doctors really wanted to wait on surgery if at all possible, as it would put a BIG strain on her body and could be difficult for her to recover. Bella needed to do several things before she would be allowed to go home regardless of surgery or not. She needed to gain weight, (she was still loosing weight, she lost a total of a 1 1/2 lbs!) she needed to hold her temperature better, she needed to stop having A's (apnea) and B's (bradycardia) and she had to learn to eat! She still had a
little ways to go..

Cuddles were always the BEST

Over the next several days we were taught A LOT about a baby with upper respiratory problems and what it entails when we go home. Scary to say the least. We were taught how to 'pace' Bella's feeds. We would have to put the bottle in her mouth let her suck 3 or 4 times and then pull it out so she could breathe. We also had to hold her a different way with our hand holding her head/ neck while she is in a reclined sitting position on our knee. Yes, we became very talented.. No cuddling our sweet girl while feeding, unless we wanted her to turn blue. Feedings were the time that I totally dreaded, it was the most stressful experience ever. She would constantly stop breathing during EVERY feed, we would have to stimulate her feet or blow hard in her face to startle her to start breathing again. She would also choke a lot too.Who wants to feed a baby like that? It is definitely not relaxing or comforting.

Since the day Bella was born (actually before that) I was determined to breast feed her. I had some trouble with Kallie so I was a little bit nervous. I was a ritual pumper while Bella was in the hospital, I would pump every 2 hours, put it in the specified bottles from the hospital, stuck Bella's label on it, wrote the date and time and then pack it up to bring to the hospital the next morning. When we were at Memorial City it was nice because they supplied me a pump in Bella's room so I could relax in there, watch TV and be close to Bella. At the medical center they had what they called a "pumping room" you walked into this stale room, sit in a chair behind a curtain, pump for 20 minutes, get up wash your hands, transport your milk and then delivered it to the lady at the front desk so she could put it in the freezer room for you. It was terrible, I hated it. My milk was slowly drying up because I was not around Bella enough to be stimulated and she could not breastfeed because she had CNPAS. She had no latching abilities and also had a terrible sucking reflex. It was to the point that Mike was recording snip its of Bella crying while we would visit her and then he would play it over and over and over again while I was trying to pump at night.. Oh the things we do for our children.

As we were trying to get Bella to a good place to be able to come home, she continued to have severe apnea's and bradycardia's. She would still stop breathing, but there were several times that the nurses would have to intervene with oxygen and so forth. It was to the point that doctors and nurses thought they were not solely coming from the CNPAS. They decided to call in a pediatric pulmonologist to monitor Bella. Her name was Dr. Jon, we LOVE her. She is still taking care of Bella today and she is awesome. Bella needed to have a sleep study done to figure out the source of her apnea's. Apnea's are common in premature babies, but when they are associated with bradycardia's they become very dangerous. It is the body's way of trying to reserve "life" when the baby stops breathing. Once the baby stops breathing for long enough, the heart and pulse start to drop drastically to try and compensate. Most of the time these types of apnea's resolve themselves. Bella's were not resolving on their own. Dr. Jon informed us that a sleep study is very difficult to do on a baby that is "in patient" in the hospital and advised us to wait until she was released. She told us that regardless, Bella was going home on an apnea monitor so we were going to be alarmed if she stopped breathing for more than 20 seconds.

It took almost 2 weeks for Bella to show that she is "thriving". We had learned to pace, she was controlling her temperature, they taught us how to stimulate Bella if she was to stop breathing, she only needed to gain some weight, or else we were staying much longer so she could have surgery. They were not going to give her much longer, but she finally gained an ounce! That was a GREAT day :) They started to schedule things such as the apnea monitor company to come train us and we both had to take an infant CPR class. Her doctors all needed to sign off on Bella going home as well. It was a long 2 day process, but Bella was finally allowed to come home!!





Are we really leaving?

We knew we were nowhere near the end of Bella's adventure, we were leaving the hospital with 3 follow up appointments for that week, a list of emergency phone numbers, and packets of information. It sure did feel like a huge relief to finally have Bella in her car seat looking excited to be leaving!!





First time being home!