Wednesday, January 20, 2010

Tommy's Story~Rocky Start

Tommy settled into the NICU and I settled into my recovery room. I had the desire to breastfeed him because I needed him to have every benefit in life. I had never breastfed before and had no idea what to expect. My body was a hormonal mess. I was supposed to still be pregnant and now my body was trying to play catch up. I had a lactation consultant come help me set up with a pump and gave me a chart. When I wasn't sleeping or trying to pump, I was going to see Tommy.

One of those times, he was about a day old. It's all really a fog and felt like a dream. I was standing next to his crib with his nurse across from me. We were talking when she stopped me. She called another nurse and asked her to verify if she could count respirations. She couldn't. Tommy had stopped breathing right there in front of me. An entire team swooped in, surrounding him. I remember backing away, trying to stay out of the way. The grandmother of the baby across from us put her arm around me spoke words of comfort. I don't remember them. I wasn't there. I was in shock. In reality, it was barely 5 minutes from beginning to end, but it felt like eternity. I was told some preemies just forget they are supposed to breathe. Tommy was put on CPAP.

He was on CPAP for a couple of days and had no more apnea episodes, so he was moved to a nasal cannula for just a little boost of oxygen, just to keep him comfortable. When he was 5 days old, I got double good news. Not only was I going to get to hold him for the very first time, I was going to give him his very first bottle! I was still pumping and dropped off every day. He wasn't very coordinated with the bottle and most of it just ran out of his mouth. Nobody was concerned because his suck/swallow/breathe reflexes were very new and sometimes it takes a few days to get it down. I loved holding him, but it took a team to get him to me. He had leads, wires, and a PICC line, plus a feeding tube and the nasal cannula. They put a pillow in my lap so I could rest my arms, then wrapped him in several blankets, held the lines to one side and moved the entire mass to me.

My mother in law took lots of pictures for me, but the light in the NICU made it hard to get many good shots, and some of that time, he was under bilirubin lights being treated for jaundice. I have lots of pictures of him bathed in soft, blue lights.

He was so small that his diapers were the size of a deck of cards. They were called Wee-Pees.

The hardest thing I ever did was get discharged from the hospital. I had it all under control until I got in the passenger seat and shut the door. I couldn't help but cry. My mother in law stayed with us for about two weeks. She was amazing. While I was bedridden in the hospital, she came and took care of the boys so Rob could work. She cleaned my entire house and used part of her inheritance to buy us a dishwasher and a new refrigerator with a water dispenser in the door for the always-thirsty Brandon. I settled in at home and tried to pump. I never did get much and what I did get took hours. After 3 weeks, my milk dried up. I blame it on stress.

When Tommy was 6 days old, he was moved to the Special Care Step Down Nursery. It's a place for stable, but premature babies. It's a small place with just six beds and two to three nurses on a shift, depending the number of babies. Tommy's nurse tried to feed him on two separate occasions and both times, she noticed he had a lot of trouble and the milk pooled in his mouth and he didn't swallow. A swallow study was done and then a scope. We found out that Tommy had a little secret. He couldn't swallow. He was diagnosed with cricopharyngeal dysfunction. The easiest way to describe a swallow is it is a series of squeezes. Each muscle in the esophagus grabs and squeezes, pushing the food down until it reaches the stomach. There is a muscle at the very top of the esophagus that begins the swallow called the cricopharygeal. It's the one that actually "captures" the food. Tommy's muscle worked sporadically. It opened when it wasn't supposed to and stayed closed when he tried to swallow.

Tommy's dysfunction was congenital, meaning he was born with it. Most cases of cricopharyngeal dysfunction are seen in adults who have had a stroke or an accident. To be born with it, meant Tommy might have a genetic birth defect and blood work was ordered to test for DiGeorge syndrome. It took about 6 weeks to confirm he was negative. Now his doctors were REALLY puzzled! Idiopathic congenital cricopharyngeal dysfunction??? No known cause??? Tommy became the "IT" boy of MUSC. As it turns out, this very diagnosis was the specialty of Tommy's ENT and Tommy would be one of his first patients in his new Airway and Aspiration clinic at the hospital.

Since Tommy was unable to swallow, he had surgery to put a tube directly in his stomach to feed him, called a Gastronomy tube, or Gtube for short. Tommy would get fed a special formula fed through a pump to the tube in his tummy. Saliva blocked his airway causing his oxygen saturation levels (sats) to drop. We had to learn how to use a machine to suction his mouth and nose to clear his airway. Tommy hated it, but we were quick and he settled down fairly quickly.

When he was three weeks old, talk started about bringing him home to grow before he had heart surgery. We rushed out to buy a carseat and stroller to hold all of his new gear. He would need an apnea monitor, a feeding pump, a suction machine, and IV pole to hold the feeding pump and portable oxygen. We were trained on how to use all of the machines and learned CPR. All that was left was a carseat test. Tommy had to be able to sit upright in a carseat for a determined length of time without his oxygen dropping. He wasn't passing, so a chest Xray was ordered. His lungs looked "wet" on the xray. The day before he was scheduled to go home, the decision was made to not only keep him, but to move him to the cardiac stepdown unit for monitoring. We were disappointed, but knew we had to do what was best for Tommy.

Dr. White, his ENT, gave Tommy injections of Botox to his crico muscle. In some cases, this had worked to paralyze the muscle in the open position so he could swallow, but it takes 3 days to find any results. He would be one month old in just 2 days. He was in a private room, so I spent a lot of time over the next couple of days holding him and taking pictures. He never cried. He was a peaceful, sweet baby.

That's why when the nurse called me telling me he was fussy, it was unusual.


Queen Mommy said...

You have such an incredible story, Rene! I know how hard it is to relive it all, but I also know that sometimes you just NEED to do it. (I typed Lily & Leah's out on my blog last year for their 5th b-day). The girls and I watched Tommy's video again this morning. He was such an amazing little boy, and I hope you know how many of us grieved with you when he died. Sending love, hugs, and prayers to you!

Sarah said...

i have a son with the same illness as ur son, i just watched the video n am cryin am so so sorry 4 wat happened 2 ur son, he didnt deserve it, no baby deserves 2 be as ill as tommy and alex, i also am finding it hard 2 come 2 terms wiv alex's illness, if u ever wanna talk, email me regards sarah

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries