Post 6

After a few weeks in, I felt confident about managing Gabriel's NG tube. His feeding and medicine schedule was still about the same. He would be fed every 3 hours and his medication would be dispensed every 4 hours. With both my parents working, I felt confident I could manage his care alone.

Gabriel was receiving Occupational therapy, had numerous doctor appointments and I had to remember to reorder his medications on time. Looking back, it seems like a silly thing to worry about. At the time, I was a newly single mother who was over stressed and lacking in sleep. It all was overwhelming. Now, I’ve adjusted to all the doctor appointments, ordering meds and therapies that all have to be scheduled.  

I have to admit, I was still nervous about the NG tube coming out. In the hospital, I refused to practice on my own baby. I thought, why put him through that if I don’t have to? I felt confident that having the tube dropped on me was enough training. Still, from the moment we arrived home, I dreaded it coming out. The nurse at the hospital explained to me that the tube should stay in for at least a month. While I’m sure she is highly educated and had good intentions, I wondered if she had ever brought home a baby with a NG tube and actually cared for them for an extended period of time.
Gabriel’s tube came out only a few days later.
It didn’t matter how careful I was. Any time he would spit up or cough, it would slide out. Sometimes I would just look away for a split second turn back to see that it was out and there was Gabriel just grinning away. He loved it when it came out.


One day we had a doctor's visit. I filled out all the necessary paper work. It was only about ten pages. I had Gabriel in my arms. He needed comforting, as he was a tad fussy. I struggled to hold him while filling out the forms. I looked at him and saw that the tube had come out yet again. I asked the nurse if they could reinsert it for me. They took me back and the doctor came in. He took the tube from me and laid Gabriel down on the table. I couldn’t help but notice the doctor looked a bit perplexed to me, as he stared at Gabriel for a bit. He then went towards Gabriel’s nose as though he was about to insert it, but I knew he was missing something. "Wait," I said. "Don’t you need a wire in the tube first?"

He then asked me "Do you usually have a wire in it when you insert it?"  "Yes" I replied. I realized I was just going to have to do it myself so it would be done correctly. I was feeling a bit unsettled by what just happened. I recall my mom saying to me, "You have to be your child’s advocate." I am Gabriel’s voice. I am his parent. It was then, that I realized, I had to be prepared for everything.

So Gabriel's heart medication was due, and it was just the two of us, so I rolled up a few towels on each side of him to help keep him still. I noticed Gabriel was showing signs that he recognized the tube. He had a specific look on his face every time I would get ready to insert that darn tube. His eyes would get big, like saucers, and he  would turn his head from side to side almost as if to shake his head NO!  Poor baby, I dreaded doing that to him. 
To this day, I still cringe at the thought of what he must have been thinking. Who knows, that’s why every time before I started, I would give him a kiss and say, "mommy loves you" This became just a normal part of our week.

In April, I took Gabriel in for a routine cardiology visit. The cardiologist came in and listened to his heart. She then gave him what I think was an EKG. After reviewing the information, She calmly said "I am admitting him into the hospital."

I couldn’t believe it!  Here we go again.

Gabriel was in for about two weeks. The doctors worked with different medications, again. The poor little guy received and IV in his head and was hooked to monitors. I couldn’t stand the site of it. He was so brave. It was a very long couple of weeks. I read to him and sang to him. I tried to sing soft lullabies but he still cried. It wasn’t until I started singing Bitter Sweet Symphony, by "The Verve", that he became calm and peaceful. Go figure.


He always gazed at me. I absolutely loved that. I told him every day that he was a good boy and life wasn’t about hospital visits. I told him life had a lot of really good things in it. Like love and laughter. That’s something I always try to do for him. I kept smiling or would just be silly. I did whatever it took to get that look on his face. He was still too small to laugh, but I knew when he was happy. I knew that look. It’s that look that encouraged me to stay positive and keep going.

One day, a nurse approached me and asked me if I would like a nurse at home. I had never heard of such a thing. She thought Gabriel should be monitored at home due to the complicated medications and the long schedule.  She said one tired person could make a critical mistake.  She gave me a number to call.  I spoke with the home healthcare company, I really had no idea how much this phone call would impact our lives for the better. Truly amazing.

This company took Gabriel’s medical information and determined that he qualified for 60 hours a week of skilled in home nursing care. Such a blessing. I get teary even now just thinking about how I felt that day. I felt like someone had lifted a huge amount of weight of my shoulders. I felt like I could breathe again.

The company sent out several nurses for me to interview and I picked one. Now I just had to determine how to use the hours. I originally wanted to use them to go back to work. But the company policy is that the parent must be within the home during services. Besides I didn’t feel comfortable leaving a stranger with my baby. Plus, Gabriel needed nighttime medication and his heart rate taken every few hours. So ultimately, I decided the hours should be used for nighttime.

Finally, I could sleep. I couldn’t get over it. This would be the first time in months where I could actually sleep for more than a few hours at a time.

On the first night with our nurse, I went over Gabriel’s schedule with her. His grandmother (Nonni) made a very organized chart using Excel.  She had already made a nice chart showing each medication with a matching syringe filled with water to show the dose for comparison.  It was a way to double check all meds given, and it was wonderful.
It felt odd having a stranger watch my baby, even if she had great credentials. Gabriel’s crib was on the first floor of our home. We had to do it that way because the trips to the fridge were so frequent and he couldn’t be left alone for even a second. The room I was staying in was on the second floor. I had only stayed in that room a few times since we moved in. Most of the time, I had slept on the love seat, which was next to Gabriel’s crib.

It hit me that night that I could now sleep in a normal bed. It was a great feeling. Still, I couldn’t take my mind off my baby.

I decided to put the baby monitor in my room, next to my bed. It’s kind of funny, but that night I still didn’t get any sleep. I couldn’t help but watch the monitor all night to make sure the nurse was ok.

Post 5

I have always considered myself a tough cookie. I may have my moments. I may get knocked down a few pegs. But I will always rise to the occasion, step up to the plate, dust myself off and resume. And that is exactly what I did.
The separation from Gabriels father was devastating, I felt so incredibly alone.
I now had to leave work completely, a job that I had loved so much.... a job where I had a bright future. It went from maternity leave to extended leave to part time work to unemployed.  Gabriel needed special care that only a nurse or myself could provide. I needed to be there for him. I wanted to be sure he received the intensive daily therapy he needs to optimize his development. I did not want to have any regrets. I just wish I could have provided for him too. 

I can’t complain. I had family and I was grateful to have them.
The feeding  and med schedule at that time was this: 8, 11, 2, 5 AM and PM.  It is still similar to this day.

Gabriel was four months old now; he had been out of the hospital about two months. On a regular visit to the gastroenterologist, we faced the fact that Gabriel was just not going to gain weight. He said it was time we take action and move to the NG tube. This would give me a way to feed Gabriel whatever remaining milk he did not take from the bottle, and buy me a bit more time to try to get him to eat. There was discussion about implanting a G-button in my baby’s stomach, but I was still not ready for that. I did not want to give up so they sent us home with the NG tube.
Before Gabriel could be discharged, I had to learn how to insert (drop) the tube into his body.This tube is a long narrow tube that contains a flexible wire in it that must be fed up the nose down the back of the throat until it reaches the stomach. It’s a painful process so once you start it’s important to keep pushing the tube in an upward motion. Going as fast as you can. The faster one goes the less painful the experience.

I didn't want to practice on my baby so I decided to let my mom practice on me as the guinea pig. All I could feel was this horrible burning sensation.

Not a pleasant experience.

Post 4

Disappointment after disappointment.  The doctors reported Gabriel had a chromosomal defect. They said Gabriel had a duplication of Chromosome 2, which was clinically irrelevant, but we would find out many months later the genetic defect was in fact a duplication of Chrome 11 (gain) and was totally relevant! 
With all the added stress and pressures, my relationship with Gabriel’s father was falling apart.

Only two weeks after the last heart incident, the staff made the decision to send us home. It was early February and Dallas had a rare blizzard.

By the time Gabriel was ready to be discharged the roads were completely iced over and the sun had gone down. Gabriel’s father and I bundled our baby up, and began the tediously long drive home. Despite the bad roads we still felt incredibly elated.
Finally, after two months Gabriel was in our care. We were able to experience that feeling of "a new beginning."

Mom, dad and baby together at last. Alone, no doctors or nurses, just us. I knew we were in for sleepless nights, I was certain that once we made it home and adapted to the new schedule everything would start to feel better. We would unite as a family with our bundle of joy.

Every three hours I was pumping milk and mixing it with thickener, giving meds, feeding Gabriel and taking his heart rate.
This process easily took about an hour and forty-five minutes. So, by the time I was done, it was almost time to start all over again. We took turns giving the bottle, but no one but me could do the pumping.

When I did have a small window to sleep. I couldn’t settle my mind. My thoughts were racing and I felt I had to talk to a friend to calm my nerves. Everywhere I looked there was something to be done. Papers with instructions on how to give the meds, how to mix the formula with the thickener, notes on future doctor appointments, bills, calls to return… papers galore covered the fridge.  It was nerve-wracking every time we measured so many meds.... to be so careful not to make a mistake. Family offered to help but I was reluctant. I kept telling myself "this is our responsibility".

Eventually, I accepted help. Both of Gabriel’s Grandmothers would come by when they could to help feed Gabriel or do some housework. For a moment, I felt a sense of peace. I went back to work part time. I worked the days Gabriel’s father was off. One of us was always with Gabriel. Slowly I started to loose my milk production. There was no adequate place to pump at work and certainly no place for the pumping equipment.  I’m sure my co- workers didn’t want to open up the company fridge at lunch time to find my breast milk chillin next to their bologna sandwich.

Everything became too much. I slowly gave up pumping all together.  The next few months went on like that. During this time I was struggling with postpartum depression.  I didn’t seek any help, instead I just kept telling myself I was fine and refused to talk to anyone about it. I’m sure Gabriel’s daddy was dealing with emotions of his own too. Ultimately, Gabriel’s father and I decided to separate. 

Post 3

From December 2010 through January of 2011, my son was still in the NICU. We still did not have a diagnosis for Gabriel. The doctors did genetic tests an MRI and other tests with still no answers as to what was wrong. I had worked for a major cosmetic company and was granted extended maternity leave, but without pay.The financial stress was weighing in heavily, sleep was limited and emotions were strong.
Then again one day, I was asked to leave the room when my son’s heart rate shot up into the 300s. This time, the staff had decided they were going to cardiovert him. This would have been his second cardioversion in two months, only this time, like many times before, he came out of it on his own. It only lasted a few short minutes. The staff decided not to go through with the cardioversion.

About an hour later I was told by the nurse I could come back. The mood of the room was now calm and peaceful. It seemed as though nothing had occurred. He was resting peacefully with his eyes closed and swaddled snugly.

I was so frightened for him. I didn’t understand why the doctors couldn’t control his heart rate. I had been told time and time again that all he needed was an adjustment of medications and he would likely grow out of his heart condition.

It was scary that two months later, my baby was still experiencing episodes of tachycardia and arrhythmia.

The medication obviously wasn’t working. And I knew we wouldn’t be going home just yet.

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.

Post 1

When I discovered I was pregnant with my first child I was ecstatic. I was finally going to be a mother. This was something I had thought about often the past few years.
By the time I was about 4 months pregnant I started feeling sharp pains in my abdomen. I went to the hospital and discovered I was actually having contractions and had started to dilate.
The hospital gave me a paper to sign stating that they could not guarantee they could save my baby. The nurse explained to me, in few words, that I needed to sign the paper in order to receive treatment. I was given a shot to pump up my baby’s lungs and other medications to try and stop the contractions.
I was in and out of the hospital almost every other week. I was seeing a obstetrics specialist and received a sonogram every week. My obstetrician kept commenting on the large amount of amniotic fluid I had. And every once in awhile he would catch the heart rate in the high hundreds.
By the time I was 5 months pregnant my baby’s heart rate would periodically race to about 200-300 beats per minute. I was given heart medication to slow down my heart, in order to slow down my baby’s.
I continued to have contractions and remained dilated 4 cm the entire pregnancy. On occasion, despite the heart medication, my son’s heart rate would speed up. It got to the point where, anytime I went to see my OB or perinatologist, I packed an overnight bag. I knew I would be going back to the hospital.

On Dec 1^st 2010, I went for a checkup. There it was again. His tiny heart was racing. It was beating so fast it almost sounded like one continuous sound. I could barely make out a beat. She simply looked at me and said "get to the hospital, do not stop at go and don’t collect 200".

When I arrived at the hospital the nurses wasted no time in prepping me for a C-section. Everything happened so quickly. From the time I got to the hospital to the time by baby was pulled out, it felt like I was only in the hospital 10 minutes.
At 36 weeks, he weighed 9 pounds 5 ounces. I had a quick moment to glance at my son as he was rolled by me. The doctors quickly cardioverted him in hopes that this would correct the rate and rhythm of his heart. It worked, for awhile.
As doped up as I was from the anesthesia, I still had my wits about me and all I could think of was I have got to see my baby.
I recall resting for a short time. But soon went to the NICU. It was an emotional moment, seeing my baby intubated. He was so incredibly swollen his eyes looked like little slits. His skin was cherry red and his hands were clenched into a tight fist.
I wanted to do anything and everything I could to help my baby. 


By day two at the hospital, three doctors came into my room to tell me they thought something was wrong with Gabriel. They explained they thought he had what is called Beckwith-Wiedemann syndrome or possible Gigantism. They kept commenting on how large he was and that his ears were so far back on his head. I didn’t see it.

They continued to talk about types of tests they would run, but by then I had pretty much tuned out. All I could think about was that something was wrong with my baby. I had no idea, that it was just the beginning.