blog 10

So now I’m all caught up…. Gabriel started a school program designed to give people like me (a single mom) a chance to go back to work or school.  

It was a long and involved process to get him in, especially with his severe condition. I’ve been working the past year to make this happen for him. The school needed permission from Gabriel’s doctors before he could attend this program. I’ve had to obtain sevrel letters stating that he was stable enough to attend this program. We needed to get duplicated meds to keep at school, etc.  

The school told me they had one nurse for hundreds of students and with his complicated feed schedule it was impossible for her to set up the pump, clean it, wait for the feed to be over then come back and clean the tubing. Instead they would request additional funding
 from the school board for a extra nurse, just for Gabriel. If they were successful we would not have to  take him off the pump during the day. Unfortunately this route proved unsuccessful. In the end, the only way to get him into school would be if he was off the feeding pump during the
 day. I waited many months but under the guidance of his GI doctor, I slowly weaned Gabriel off the pump. 

We weaned him from the pump to the bolus tube over the course of many many months. On the pump, his feed took about an hour but a bolus feed takes about five minutes.  I now could bolus him during the day and he would only be hooked to the pump throughout the night. 

After all these months, he could now go to school. He deserves a better life. For the past year the two of us have basically been confined to one room all day, hooked to his pump… I stayed by his side and read to him sang to him, used flash cards, we played, you name it. Our daily schedule was filled with appointments with any of his 12 doctors, so we rarely got to do anything else! This opportunity would expand his world.  

Gabriel finally started school in Oct of 2012, we had to ease him into this new world. 
Every week I took him to school and stayed with him for a few hours. Then we would go home. He’s made many friends while at school, Gabriel also gets therapy from an early childhood group for children with disabilities. Gabriel is thriving and I finally have time to work on changing our lives for the better.

Post 9

Looking back, it all makes sense now.

All the pieces of the puzzle are coming together and forming the picture that is Costello Syndrome.

Every time I turn around it seems there is a new challenge to face. Just when I get use to one issue, low and behold, there’s something new that emerges. I remember asking medical staff if there was anything we could do to look at his airway. Yes, I remember asking about it many times the first few months of his life. What prompted me to ask for this kind of exam? Well, remember he wouldn’t eat? We couldn’t figure out why.  Everyone kept telling me the milk was too thin, or I wasn’t holding my baby properly during a feed.  Remember? Because I certainly do. I remember how inadequate the staff made me feel. Nurses telling me I had to work at feeding my baby. So, here we are, five months later and it only took 4 times for my son to stop breathing before someone, other than me, started asking questions. Only 5 months and 4 blue spells before his airway was ever looked at.

Finally, he underwent a laryngoscopy (a medical procedure that is used to obtain a view of the vocal folds and the glottis) and bronchoscopy (a procedure that allows your doctor to look inside your lungs' airways). The exam revealed he had significant subglottic stenosis (a rare condition in which the airway narrows because the airway cartilage did not form normally in utero). He was born with this deformity, and now we knew why he couldn’t breathe at times and why he struggled with eating.

To date, his symptoms since utero are excess anionic fluid, various heart issues (ectopic atrial tachycardia & atrial flutter), ulnar deviation of the wrists and fingers,
 tight achilles tendons and now a deformed airway.

Lots of research, questions and confusion; but still no results from any genetic testing.

Something had to be done about his airway. The plan was to perform a tracheotomy. The hospital staff explained to me that this was our ONLY option. They gave me a packet of information, a video to watch and told me I would be sent to a nursing facility with my son for thirty days to learn how to care for the trachea tube. I was even invited to meet a family with a child on a Trach. I declined. I didn’t want to meet the family. I knew what we were in for. I’d prefer to just deal with it head on. I felt like going to meet this family was like sealing the deal. Our nurse kept telling me I should go so that I could see that having a child on a Trach really wasn’t that bad.  What?  Wasn’t that bad?  My thoughts kept reverting back to the time I thought a G-button was so awful.  The G button was a mere walk in the park compared to what was to come.  I once referred to it as “that darn button”. Now, I’d be saying “that darn Trach.”
 

No, I can’t just accept that my son would have a Trach.  I wasn’t ready to fold, not yet. I still had questions. A majority of the time Gabriel could breathe on his own.  It was just random moments when his air would be cut off. The rush to perform a tracheotomy seemed lackadaisical. There had to be another way.  I met with an Ear, Nose and Throat (ENT) doctor to discuss my concerns.  He was very warm, friendly and incredibly patient. He told me this was this only way.  I took a deep breath looked him in the eye and told him I would not consent to the tracheotomy and to find another way. He gave me a quick head nod then left the room.  I sat there alone for several minutes, left with only my thoughts. Was I in denial?  Was I demanding something that was dangerous for my baby?

Our nurse entered the room. She asked me how things went. I told her what I had said to the doctor. She then looked me in the eye and said, “He doesn’t need your consent to perform the tracheotomy, he will do what he thinks is best for your son.”  I never felt smaller. I knew she was right, but I couldn’t silence that little voice in my head telling me to fight this one. I needed reinforcement. I called on my family for support. We decided to request a more formal meeting with the ENT.

Early morning the following day, I was awaiting our scheduled meeting. I sat in a chair at Gabriel’s bedside and read to him. A woman, whom I have never seen before, entered the room. It was apparent she was a doctor but what type I wasn’t sure. She wore a white lab coat and had a very matter of fact disposition. She looked over Gabriel she examined his hands. She then asked me  questions about how the pregnancy was with Gabriel. She asked me if I had excess anionic fluid. I wasn’t surprised by the question. 

My pregnancy with Gabriel had been extremely complicated and I had now learned about the possible outcome to my symptoms.  I knew that excess fluid was not common, but when present, often suggested poorly controlled diabetes, twins or gestation cleft pallet as well as a long list of syndromes.
 

I was already told that my son had a syndrome. What was she getting at?  She asked me a few more questions about my family history as she continued to look Gabriel over. I answered to the best of my knowledge. I explained that Gabriel had molecular genetic testing done several months ago with no conclusion. But time was up. I told her I would have to leave to attend a meeting with our ENT.

Gathered around the large table were my parents, Gabriel’s father & his parents, and the doctor.  

None of us wanted Gabriel to receive a tracheotomy.  We all agreed we wanted a second opinion.  But, what kind of a risk are we taking by waiting on that second opinion? Our ENT doctor listened patiently as we hashed out every aspect of the issue.  He gave a surprising response. He told us he had contacted some of his peers and did some research.  There was a procedure referred to as “balloon dilation.” 

This procedure could possibly reshape the airway.  This balloon is to be inserted into the airway
then inflated.  The hope is that inflation of the balloon will open his airway. If this proves to be unsuccessful, then they would go ahead with the tracheotomy.

 I agreed with the plan and the surgery was scheduled.

Gabriel was taken back to undergo the balloon dilation procedure. All I could do was sit and wait. I tried to prepare myself for what I might see. He would either come out with a better airway or I would see my baby for the first time with a trach tube in his throat. I was surprised as to how fast the procedure went. Gabriel was in and out in under an hour. The ENT surgeon approached me with a grin on his face. He told me he was pleased with how easy Gabriel's airway popped open. I was thrilled, but he cautioned me that his airway could still collapse at any time. He told me we might possibly need to come back and get this procedure done several more times before his airway holds open.

If it collapses several times more, we would then consider surgery or the trach as an option again.  For now things are good and stable for Gabriel

Post 8

Gabriel recovered from his G button and fundoplication procedure and we were sent home a few days later.

Gabriel would now be hooked up to his feeding pump a full hour every three hours during the day, and then it would run all night. I soon realized the risk of Gabriel entangling himself and possible strangulation from the tube. This became a constant worry to me. All the child care experts and any baby book will tell you that by today’s standards a baby should have nothing in his crib, but should be dressed in a single layer of warm clothing. Having blankets, toys, and stuffed animals increases a baby’s chance of dying from SIDS. However, through research you’ll find there is hardly any literature on how to manage a baby with a feeding tube in his crib. It was nerve-wracking. Strangulation from the tube is a real possibility, even to this day, when he is hooked up to the pump. I can’t leave him alone for a second. In addition to that, there is the fear of him pulling out the G button by snagging or pulling the tube in some way. I had to thank my lucky stars my son was approved for a nighttime nurse so I could sleep at night. But that got me thinking. How do other families, who are not fortunate enough to have someone to monitor their loved ones, manage their children that are on feeding tubes and respiratory equipment?

Not too long ago, I was watching a documentary on the Discovery channel. There was a story about a 16 year old boy with cerebral  palsy and his parents. The life they led seemed unreal to me. They were a typical middle class family. The mother stayed home with the boy, and the father worked long hours to pay the bills. I watched in sympathy as the mother carried her boy from room to room as they went about their day. Their home was not wheel chair accessible. The father was unable to lift his son due to several heart attacks he had endured the past year. The mother was left to do almost everything for him. She bathed him, fed him, dressed him etc. She even slept in his room every night on the floor as he was prone to seizures and suffered from sleep apnea. The mother was understandably fearful of what might happen to him during the night. She carried this heavy weight upon her.

When I recalled this I immediately felt selfish. I had to mentally step back a moment and remember how blessed I really am. I started looking for products that may help with the G button. Eventually, I discovered a simple and delightful product to help protect the G button from tugging and aid in keeping the button clean. The company is called "cute as a G button". The product is a belly band that snuggly wraps around your baby’s tummy. Simple product, great idea!

As weeks went by, just like everything else, Gabriel and I adapted to life on a feeding pump. Before I knew it, I had Gabriel in one arm and was pulling the IV pole and pump with the other. If we went out, I would remove the feeding pump off the pole, stick it in a backpack, and carry it with us.

The nurse we had been using took a job working at a hospital and gave me her two weeks notice. I spent a great deal of time interviewing prospective applicants, and when I found a nurse that met the criteria, I trained her on how to care for Gabriel. She told me she was confident in what she had to do for him:  monitor, clean, refill his feeding pump, distribute meds every few hours, and check his heart rate every few hours.

I cautioned her about being very mindful of where the tube is at all times, so to prevent accidentally pulling it out of his stomach. On her first night of the job, around 3 AM, the nurse woke me up and exclaimed, "The button has come out." Half awake and in haste, I made my way to Gabriel. As I came closer his crying screams got louder. Then there it was, a hole in his stomach where the button had once been.

I knew we had to get it put back in very soon. During our most recent hospital stay, the doctors stressed that if the button does somehow come out it must be replace within two hours. Otherwise, the hole will likely close up and Gabriel would have to undergo surgery all over again.

My grogginess wore off, then it hit me... Gabriel was due for his heart meds. We had to get the button in, and it had to be done now.

I looked to the nurse to replace the button. She explained to me she had never replaced one before and didn’t know how to do it. This was news to me. During our initial meeting she told me she was confident in all areas of G button care. Now here she was, telling me she couldn’t do it. I wasn’t pleased. I had a good idea how to put it back in, but I had yet to actually do it successfully. I had high hopes that the nurse could do it for me. I was dreading  attempting to insert the G button. I never had a problem dropping the NG tube, but for me, the G button was a whole new ball game. I could barely stand to look at the hole in his stomach much less try and push something through it. I needed help that the nurse obviously couldn’t provide.

Feeling flustered, I called on my mother and she immediately showed up, rolled up her sleeves, and proceeded to insert the button. Gabriel’s cries of pain were almost too much to bear. An hour had gone by with no success; I was getting ready to pack his diaper bag to go to the ER to replace this stubborn button. That was, until out of nowhere, I heard an explanation of joy shout out "I got it in!" When I heard my mom say this, all I could think was... thank God for moms! I realized I would have to suck it up next time this happened. It was apparent the button coming out would be a common recurrence.

It was now the end of June 2011, Gabriel was at his father’s Saturday night. I was at home sleeping soundly. Around 2 AM, I received a frantic call from Gabriel’s dad. He told me Gabriel had stopped breathing and was at the hospital.

When I heard those words, a familiar sickening feeling came over me. He told me what hospital they were at and hung up. I took the 30-minute drive to the hospital much faster then I should have. I couldn’t get there fast enough. Once I arrived, I was immediately taken to the room Gabriel was in. By then, my parents had arrived and Gabriel had quite the posse. Doctors, nurses and family surrounded him. I went over all the meds he was currently taking with the staff. Gabriel appeared to be okay. He was lying in his hospital bed surrounded by cushioning blankets. The doctors and I were discussing the details of Gabriel’s blue spell episodes. I asked again if it may have been a rapid heart rate that could be the culprit. A nurse intervened and said "It’s hard to say if his heart is causing the blue spells unless we see it on the monitor."

Almost as soon as she said that, the monitors sounded the alarm. It was happening again.

He stopped breathing. This was the second time he stopped breathing that day. The staff acted quickly to give him oxygen. I stayed by his side, but all I could do was watch helplessly. It wasn’t long before he came out of it, just as he had done before. With the oxygen mask in place, he slowly started to breathe again. The blue color slowly faded as his respiratory rate steadily increased.

Now everyone had seen it. During the blue spell, the heart monitor displayed a normal heart rate. Now there was no doubt. It wasn’t his heart causing the episodes. This was an entirely new problem. It was his airway.

Post 7

It was now the month of May. I had celebrated my first Mother’s Day with my son. Things were going smoothly. Gabriel was home, I adapted to the new schedule and managing the NG tube. Gabriel still had a very persistent cough, but the cause was a mystery to everyone. Even during all his hospital stays no one could figure out why he coughed so much. Every time he coughed it sounded like a barking dog or the cough of a heavy long time smoker. Harsh and raspy. He did not have a cold or a virus of any kind.

On Memorial Day weekend, Gabriel, my mom and I were hanging out in the family room. Gabriel was sitting in a bounce seat. Out of nowhere he started to cough a little, then the coughing stopped and his face began to turn blue.  His eyes rolled into the back of his head and he seemed to lose consciousness.

The next few minutes were the scariest of my life.

 I realized he wasn’t breathing. I leaped and grabbed the phone and called 911.

My mom lay Gabriel in front of her quickly and started the steps prior to CPR…..skills I thought we would never have to use. I called his name repeatedly and smacked his feet just as we had been taught. Then all of a sudden, he simply came out of it. Thank God!

The paramedics arrived only a minute after I had called. They came in, but his color had already returned and he was smiling at them. I couldn’t believe what had just happened. I was shaking. I had never seen that before. I had never seen anyone turn that color, much less my own baby. I had never seen anyone’s eyes roll into the back of his or her head. Seeing that happen to Gabriel was heart wrenching for me. The paramedics stayed awhile to assure he was ok then said we could drive Gabriel to the hospital and they would be prepared to follow us if needed.

We drove him to the ER. When we arrived they took him back right away. I notified Gabriel’s father and by then Gabriel was hooked to monitors.The nurses asked me what position Gabriel had been in at the time of the blue spell. I explained he was just sitting in his bounce chair.
They had thought that maybe Gabriel had been sitting in an awkward position that could render him unable to breathe. I insisted I did not in any way have him in any awkward position. I was taken back by the questions and truly offended.
At that moment, the heart monitor showed his heart rate going up to 300 beats per minute.The staff acted quickly to stabilize him. It was then staff believed his heart was responsible for the blue spell. That night, was a long and worrisome night. The next day the doctors came in to discuss their plan. They told me an electrophysiologist from Austin would be doing another  cardioversion. They had already tried the cardioversion two times since Gabriel was born, and it did not work. But they wanted to try it one more time. They also went to work trying different recipes of medications until they found one that seemed to be working. The subject of Gabriel’s NG tube came up. Doctors decided to go ahead and schedule the G button (mickey button)  surgery. The doctors felt we should just do it and have it done while all the specialists were there and Gabriel was stable. So the G-tube was implanted during this hospital stay. I had been dreading this for a long time. But we had come to the end of the road.
In retrospect, having the G-button put in was not the end of the world and was certainly necessary.
I realized that much like everything else, we would adapt.
The surgeon came in to talk to me. He told me that in addition to the G-button procedure They also wanted to have another surgeon perform a nissen fundoplication. I learned that this procedure is typically done along with the G-button procedure. The fundoplication would keep him from being able to vomit, burp or even spit up, but the consensus of all the doctors was that Gabriel needed it. There was no time to even think about it. It was done.

The surgery was risky, given his heart problems, but it was a success. All went smoothly and I was relieved. When I saw the button for the first time in his little tummy, it looked so strange to me; it had black stitches over it to help keep it in place while the incision healed. A long tube came out and extended from the button. I didn’t realize at the time, but the long tube that came out from the button was only an extension tube that hooked into the G-button and could be taken on and off as needed. This tube was used to connect him to the feeding line, which was attached to the bag on his feeding pump.

The next few days Gabriel continued to heal from the surgery, his heart was stable and the staff taught me how to care for the G-button and feed him through it. The medical supply rep came out and set up the pump so I felt comfortable with this new situation. I was on information overload, but hey, what’s new.

For a couple months we kept trying to feed Gabriel a little from the bottle, but after the fudoplication procedure, Gabriel would never take the bottle. Prior to the surgery he had loved the pacifier and he still acted like he wanted it, but would gag and spit it out…. so he never took the pacifier again either. From then on, everything that went into his body would enter by way of the button. He started to gain weight immediately and that was awesome. It assured me that the time was right and I had done my best.

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.