Friday, June 26, 2015

June 26 - Dear Nicholas Sparks (Guest Blogger Jean Button)

Dear Mr. Sparks,

Kevin and I had been married for 10 years and had two little girls when I got pregnant in the fall of 1992. We had waited until we were financially stable to have this third child and the pregnancy was well planned. I was about to finish up my Bachelor's degree in Elementary Education that coming spring, something that had taken me 9 years to do in the evenings. We were very young when our first daughter was born, Catie, in 1983. I was 17 and Kevin was just 18. When Diana was born 3 1/2 years later we thought maybe we were done. As the years went on and we struggled to make it, we realized that we wanted one more child to enjoy when we were more mature parents. Two months after we discovered I was pregnant I had a nasty miscarriage in front of the class I was doing my practicum in. It was an awful experience. Our obstetrician told us to wait at least 3 months before becoming pregnant again. We didn't heed his advice and I have always wondered if this was a factor in the nightmare that was to come. I realized I was pregnant again right after Christmas. A test confirmed it but we waited awhile to inform everyone after having done this two months before. When I was 4 months along, I was sent for a routine ultrasound at the local hospital. The technician was the sister of Kevin's boss. After I had been on the table awhile, her face changed and at that point we immediately knew something was wrong. She said that she needed to go get another technician. This is every parent's worst nightmare. After two doctors came and looked at my growing baby, they all retreated to the back room. After 15 minutes or so they came out with grave looks on their faces. They informed us that our baby girl had some sort of mass in her chest. It could be one of three things, one thing called Congenital Diaphragmatic Hernia was the worst of the three possibilities, but was unlikely. They scheduled a Level 2 ultrasound at Beth Israel Hospital, Boston and we left there stunned. We had no information whatsoever and had been reassured that it was probably not CDH.

This news made student teaching difficult. I couldn't concentrate knowing that there was something wrong with my baby. At Beth Israel, the doctors informed us that our baby girl did indeed have CDH and the chances for her survival were slim. They outlined some possibilities, one of which was a late abortion that could be done out of state. At this point I was 23 weeks along. We went home and I prayed harder than I had ever before. I knew that God would never want me to give up on this long hoped for and planned for baby. We picked out a name for her, Michelle Rianna, and began a journey that forever changed our lives.

We began to go weekly for level 2 ultrasounds and non-stress tests. I endured 2 amniocentesis and a PUBS test for chromosomal abnormalities. Michelle had borderline hydrocephalus, but her chromosomal tests came back normal. We met with a surgeon who had trained with Dr. Michael Harrison in California, of fetal surgery fame, and he gave Michelle only a 15% chance of survival. He explained that ECMO would be a last ditch effort and they didn't have that at New England Medical Center (where I was under care for my pregnancy and where Michelle would be born) and if she needed this she would have to be transferred to Children's Hospital. Dr. Crumblehomme recommended us for fetal surgery and I went through an agonizing few days trying to weigh the pros and cons of this, as there is great danger to the mother and the baby does not always survive anyway. The tape of my ultrasound was sent to Dr. Harrison in California. Just when we had made the decision that I would not put my life in danger, that my family needed me here in Massachusetts, Dr. Harrison's assistant, Dr. Adzig, called me and told me I could not be considered because part of Michelle's liver had herniated up and the surgery would be too dangerous. I was relieved to not have to go even as I had already made this decision.

The weeks to Michelle's birth were agonizingly long. We met with counselors and psychiatrists to help us deal with what they termed as the impending death of our unborn child the minute she was born. The biggest and most helpful support we received came from members of our church family and our family and friends. People we didn't even know prayed for us as word spread about our situation. I graduated with a 3.83 GPA in June of 1993, but it was all a blur. I don't know how I did it. I had a great Co-operating teacher who was very understanding.

Our two older daughters began to see the strain as the news sank in and the traveling back and forth to Boston every week began to take its toll. We cried all the time, but through it all we maintained hope and it brought Kevin and I closer together.

I was called into the hospital to begin an induction on the 18th of August as Michelle was my fourth pregnancy and a baby like her could not be delivered on the highway. We were all set to go and they called and said there was no room at the hospital and to come the next day. What an emotional blow!

By the time I got to the hospital the next day, I was in real labor. After 7 hours of laboring with about 20 people in the room I gave birth to Michelle at 6 lbs., 15 ounces. She made one feeble cry before they intubated her. I didn't even get to hold her, I had one fleeting glimpse, then they crowded around her and I could see her no more. By the next day she was no better and they decided she would need ECMO and transferred her to Children's Hospital. There we met Dr. Jay Wilson, to us he is the most important man besides God in Michelle's life story. A compassionate, skilled and realistic man, he explained to us her chances in real language and reassured us that he had operated on more CDH babies than any other doctor in the world and that she was in good hands. The nurses at the hospital made a sign welcoming her into the world and adopted her like their own. When she came off ECMO , one bought her a new outfit and took pictures.

Michelle was intubated until October. We finally got to hold her for the first time in September. She had a long and complicated hospital stay. In December they placed a g-tube. She began to have fluid overload problems. She would get pumped up with Lasix and dry out, do very well, then regain the fluid. She never learned to eat well, because by the time she went home at 10 months, the formula she was on was 50 calories an ounce! She was all set to go home at 8 months when she got RSV and ended up back in the ICU once more on the verge of death. She was back on the respirator and began to lose weight that she couldn't afford to lose.

On June 8, 1994, almost 10 months after her birth, Michelle finally came home! We had round the clock nursing, oxygen, multiple medications, a heart monitor, an O2 SAT monitor, IV poles for feeding and tons of supplies. She went back a few times those first few months for IV Lasix, but slowly at home she began to gain weight. It all seems so long ago now, but it was a very long haul. At age two she had a Nissen Fundoplication. She had vomited everything up til that point and we had no other choice. She began to eat after this, her fear of vomiting began to diminish. By age 4 she was no longer receiving anything through her tube and we had it taken out in October of 1997. My parents took her to Disney World as a reward this past May for persevering, gaining weight and getting her tube out. She had one more surgery just before they left to close up the stoma site, as it had not totally closed.

I need to tell you all about the two other families with CDH children that we met at the ICU at Children's Hospital. Our children were born within a week of each other in August of 1993 and it is a complete miracle that they all survived. We feel as if fate brought us together so that we could support each other. Noelle was born one week before Michelle and Danny was born one week after Michelle. We have the closest relationship with Noelle and Danny's parents. Each child has had a very different medical course but we can talk to each other like we can talk to each other on the listserv, without having to do a major introduction before we can have a conversation about our child. Noelle, Michelle and Danny spent a long time together in the hospital, first in the ICU, then on the floor. We saw each other frequently in the monthly CDH clinics at the hospital. We always get together for their birthdays and Christmas and try to see each other as much as possible in between. God knew what he was doing when he arranged it so that we could meet each other, because I don't know what I would have done without Wendy (Noelle's Mom) and Maureen's (Danny's Mom) support in the 5 years since our Cherubs have been born. We frequently give each other angel motif items, even before we discovered the Cherubs website. We call them the 3 Musketeers, 3 Peas in a Pod, or the 3 Angels. Whatever we call them, they are truly God's Miracles, just as every other CDH child who has been born into humanity.

Michelle's mom, Jean Button (Massachusetts)

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