January 9, 2012

Post 2

By day 3, my son needed to be transferred to another hospital. My nurse insisted I stay behind to heal up from the c-section, but she didn’t know me that well. I packed my stuff and followed Gabriel.

It wasn’t long before the breastfeeding counselor, and a nutritionist from the new hospital, bombarded me with information and papers. I was so exhausted it didn’t even register to me who they were. I was still trying to absorb all the information about my son.
Weeks went by, I was used to getting up and spending the day at the hospital. The machines wires and tubes were no longer foreign to me, just part of my baby’s room. The constant beeping sounds seem to just blend in and were no longer so blatant. And when the alarm would sound on Gabriel’s heart monitor, I no longer jumped in panic. I knew to call the nurse in and hit a little button on the monitor to stop that piercing sound. The doctors would have Gabriel on one cocktail of heart meds, and for awhile, it seem to work. His heart rate would go back down to normal and stay that way for days. Then, with no warning, his heart rate would race back up again and it was back to the drawing board. Doctors would increase the dose or try a new combination of meds. At this time I didn’t know nearly as much as I know now. I didn’t know that each time his heart rate would race, it was weakening his little heart muscle. I didn’t know that in many cases when a baby is born with a rapid heart rate; it tends to self-correct as they become stronger. I didn’t know that Gabriel’s heart was getting worse. I didn’t know because no one told me. The doctors, I’m sure, didn’t want to worry me any more then I already was. Still I would have rather known.

All the while, Gabriel wasn’t eating well.

The doctors had him off the ventilator and breathing on his own. I was told he was ready to breast-feed. I was so excited. I had spent hours learning as much as I could about the benefits and techniques to breastfeeding while I was pregnant. I felt like a pro. Gabriel latched immediately; it was as if he was a pro himself.
It was only a few minutes into the feed before Gabriel leaned back, shut his eyes, arched his back, turned red and coughed heavily. After a few days of this, our nurse insisted the milk was too thin, and I could no longer breastfeed my baby. It was heartbreaking for me. We made the switch to bottles and started adding a thickener to the milk. But Gabriel still wasn’t eating well. Feeding therapist would come by and teach me many techniques in hopes that Gabriel would take his bottle. On average, a baby will eat about 50-90 ml per feeding then increase to about 120-150 ml per feeding about every 3 hrs or so. Gabriel was only eating about 20 ml in 45 min then he would play possum.

For a person that has no children, or perhaps a new mother, the amount of milk and how long a baby takes a bottle may seem like a trivial matter, especially when there are other health problems at hand; however, I’ve learned that a baby burns more calories when they are eating, especially if they are taking too long to eat. Therefore, the baby is not getting the calories needed to grow. If a baby loses calories, first it effects the body then the brain. It is crucial a baby gets all the nutrients, especially in the first year of his life. The brain of an infant needs to be given every opportunity to reach its full potential.
Gabriel taking his bottle became a huge ordeal. Nothing the therapist taught me seemed to work. I even started to think that, maybe it’s me, maybe I’m the problem. On occasion a nurse told me "I got him to take a full bottle in 30 min." I couldn’t believe it… how could a stranger get my baby to eat more and faster? What was I doing wrong? I started to lose my confidence as a mother. The nurses started putting whatever he didn’t finish in to a NG tube (a feeding tube that runs up the nose, down the throat and into the stomach). We did this for some time. All the while, Gabriel’s heart had stabilized. It seemed the doctors finally found the correct meds and dosage for him. His feedings were now the center of attention. Every time I went to feed him it felt like I had to put my game face on. I had to focus on the techniques. Hold him upright yet at a perfect angle. Hold the bottle in just the correct manner and tap on the bottle if his sucking slowed down. I would also rub the back of the neck if he stopped sucking.   

All of the things the feeding specialist told me to do, I did. For a time he finally started taking 100-120 cc in about 30-45 min. I felt like I had figured out the exact technique to get him to eat. The nurses explained to me that he still wasn’t gaining the weight needed. They wanted to put a gastronomy (G button) in his stomach. This at the time was a new concept to me, and a scary one at that. I didn’t want that thing put into my baby’s stomach. And the idea of him being put under anesthesia with his delicate heart condition didn’t sit right with me either. I decided I would stay up at the hospital for a full 48 hours to ensure he was getting every bottle properly, in hopes I could prove that Gabriel did not need the G button. I was determined to successfully have my child eat and gain weight. The next 48 hours were tediously long, but successful! He gained the weight needed  and I felt like we had dodged a bullet.
The next day we started talking about bringing Gabriel home. He would go home with out the NG-tube and would not have surgery for the G button. I was trained on how to perform CPR, taught how to draw the meds and prepare his formula. I was still pumping round the clock every three hours. I was totally sleep deprived and completely worn out. But I was so overcome with joy at the thought of holding my baby in our own home.
The night before being discharged, I finished Gabriel’s bottle and place him back into his bed. It was approximately 8 o’clock in the evening when Gabriel’s heart rate shot up too 300 bpm (beats per minute) The staff ran in and despite my calm demeanor, they asked me to please step out of the room.

That was the first time someone had asked me to go.