The Beginning of Our Journey

I will try my best to somehow provide some background information on this journey we’re now on. Be warned, this will be long.

Somewhere around 20 weeks of this last pregnancy, we were told something didn’t “look right” on the sonogram. We were sent to a specialist and it was determined that our little girl (our 3rd) most likely had Spina Bifida. A condition I had only heard of, but knew nothing about, and, as far as I knew, never knew anyone who had it. So the research began. Just enough to know what to expect, but not enough to scare me.

The plan was to do a c-section at 37 weeks to prevent labor that might cause further trauma to her spinal cord or brain. Until then I would be monitored closely.

At about 6 months, I began having contractions and was sent to the hospital. They shot me up with turbuteline and sent me on my way. I spoke to the regular ob 2 days later and he wasn’t concerned. He said, “We can’t keep you from having contractions.” Um, ok?

The next time I saw the specialist, I was informed that contractions were absolutely to be prevented if at all possible, so I was put on a regular course of meds to prevent contractions…and eventually made the decision to see the specialist only since the regular ob seemed to have no concern whatsoever for my child’s well-being.

After just a few weeks, I went for a routine check-up, only to find that I was having contractions 7-8 minutes apart…and not feeling most of them. I was sent straight to the hospital where I was confined to a bed with a steady drip of magnesium. I stayed there for 4 days before being released to go home on bed rest. I then spent the next month with a steady stream of friends and family through my house as I was unable to care for my other 2 girls – ages 1 and 3.

Not long after my hospital stay, I noticed changes. My once extremely active unborn baby was no longer active. I had taken refuge in the fact that she was so active during the pregnancy since children with Spina Bifida often suffer from paralysis to some degree. She was obviously not paralyzed. However, she had almost stopped moving entirely. I kept telling the dr and nurses, but they didn’t seem concerned since children with her condition usually don’t move a lot. She also practically stopped growing. This did concern them to some degree, and again, I explained to them my concern over her lack of movement which was NOT normal for HER. I was told to do kick counts that night and go to the hospital if she didn’t do her X number of movements in X number of hours. That was a Tuesday.

I was 34 weeks pregnant.

Needless to say, we went to the hospital where I spent the next 4 days being monitored. By the end of the week, I was hanging out comfortably in the maternity ward – no baby yet though. My dr was considering keeping me until delivery at 37 weeks, but said we’d see how things were over the weekend. Later that same day, I got an ultrasound and was moved back to L&D immediately after. My whole family showed up thinking we’d be having a baby. We didn’t.

The next morning, my dr came in WITH the sonographer. After a short ultrasound, she said plainly, “We’re going to have a baby.” I asked, “When?” Her response? “As soon as your husband can get here.”

Blood was no longer traveling through the cord. Hope was basically starving. We had to deliver that day.

Hope was born by emergency c-section at 4:10pm that day.

The NICU staff had to perform immediate chest compressions to get her breathing. I was suspicious that this might be going on. My husband was watching it, but said nothing to me to keep me from worrying. I waited anxiously to hear that first cry, and of course, I cried when I heard it. She was then whisked away to the NICU for further care. I barely got a peek as she was rolled by.

The medical team working on Hope immediately after her birth.

It would be the next day before I would see her, and days after that before I would hold her. She would spend the next 3.5 weeks there.

At the time of her birth, the dr found that her cord was EXTREMELY long…made that way by all her movement early in the pregnancy. The cord had become “hyper-coiled” in the process. Preventing flow through it. Thankfully, we caught it in time.

First time holding Hope.

The first day I saw Hope, I was told she was the sickest baby in the NICU. She had a long list of issues already – lung and heart problems, jaundice, low-birth weight, along with her existing Spina Bifida. We were told her NICU stay would be a roller coaster or ups and downs. She mostly went up. 5 days after she was born, she had surgery to repair her myelomeningecele (her specific type of spina bifida). A week later, she had surgery to insert a shunt because she had developed hydrocephele (common with spina bifida). She improved quickly.

At the end of 3.5 weeks, she was the healthiest baby in the NICU and was moved to Peds, where she and I spent 4 days before going home. She was breathing well. She was eating well. She seemed perfectly healthy…except for the fact that she was still not back to her birth weight.

At home

Hope spent 9 days at home. For 7 days, she was fine, other than the fact that she didn’t sleep well. Par for the course, I thought. Then she started sounding congested and began having problems feeding. By the night of day 8, we knew something was wrong. She couldn’t take a bottle. She was drowning and gagging with every swallow. Early in the morning of day 9, we took her to the ER. She was admitted to the hospital.

We would be there 5.5 weeks.

The next several weeks would actually be a roller coaster – of drs, of treatments, of diagnoses, of battling to get someone, anyone to listen to us. My child was fighting with everything she had to breath and they were concerned with reflux. REFLUX! We had stopped bottle feeding and she was being fed through a tube. It took over a week before any real tests were done. They spent the first week speculating and trying meds while she was on oxygen and tube feeding. Every muscle in her body tensed and arched trying to breath.

We had a swallow test and found out she aspirated every thickness possible.

They gave her caffeine to stimulate her lungs.

Zantac to stop her reflux.

High-flow oxygen to push air into her lungs.

Robinul to dry up her own secretions that she was aspirating.

But they were only treating symptoms.

X-rays showed no pneumonia. CT scans showed her shunt was fine. No answers.

We found out she had something called a Chiari malformation, but no one seemed to be concerned with that as a possibility. Strange since if you look it up the problems associated it with are swallowing, breathing, apnea, etc. All issues she had.

After 2 weeks, we had a ENT consult. They performed surgery to repair a floppy airway. We were excited because we had a diagnosis and a solution.

It didn’t work.

A week after that, we made the difficult decision to have a tracheostomy. I didn’t like this decision. I cried for hours when I learned I would no longer hear her cry. A baby’s cry – a beautiful thing you take for granted, even find annoying at times, until you’re told you’ll no longer hear it.

Seeing her post-op was like looking at a different baby.

She was calm.

She was relaxed.

She was breathing…easily.

I breathed easily.

I forgot about my previous fears. Her cry didn’t seem so important anymore. Her new cry is something I’ve become so accustomed to that I don’t even think about it much. It’s just part of her.

Her trach would be the only treatment from her hospital stay that made any obvious improvements to her condition.

She underwent several more tests before returning home with her trach and feeding tube.

For Part 2 of the story, READ THIS POST.

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