Monday, May 12, 2008

Our Boarding Passes

You may wonder why I keep referring to Holland. I will get to that later. First I want to start with how this voyage began. Kenneth and I started trying to get pregnant for the second time in May or June of 2006. We knew we would be pregnant in no time and were really excited to bring Carly a baby brother or sister. The months went by and we changed our thinking, maybe we weren't going to be able to have another child of our own, maybe we would adopt. Then, in early April of 2007 we found out we were finally pregnant. The journey had been long but well worth the wait. I had the usual morning sickness- well, maybe not usual, I think it was to excess but I think any puking is excess. I lived on Zofran up until about 20 weeks when I finally started to feel human again. I felt wonderful. Things were finally going my way and I was convinced this was going to be the most wonderful pregnancy ever. At 24 weeks I started having contractions and although it was determined they were probably Braxton-Hicks I was put on bed rest until further notice. I didn't feel the baby move much over the weekend and went in to see Dr. Klein on Monday. My blood pressure was up and I was sent to the hospital for further testing. At the hospital my blood pressures were even higher and I was admitted and here is where the roller coaster began. I was diagnosed with preeclampsia (PE) and told that I would likely be delivering my baby fairly soon and that she and I were both very sick. Luckily I stabilized and was sent home on strict bed rest. I was in and out of the hospital 3 more times for a total of 4 before I was finally admitted for the duration of my pregnancy. I stayed on hospital bed rest for 7 long weeks for a total of 13 weeks of bed rest. During that time I also developed gestational diabetes (GD) and was started on insulin. This was not good news in any situation but especially not in mine because with PE the baby usually needs to be delivered early but with GD the lungs mature later so this was not a good mix. There were stable periods and unstable periods but God was good to us and we made it to 38 weeks. I was scheduled for an amniocentesis to check fetal lung maturity and when they went to do the amnio there was not enough fluid left which was dangerous for the baby and so it was decided that I should be induced. I had 2 hours of labor and then delivered a beautiful 5 lb 15 oz baby girl. We named her Anna. Anna was perfect. There had been talk of possibly having to ship her to a larger facility after birth but again, she defied the odds and appeared healthy as could be. (Or so I thought. I was on a Magnesium drip because of the preeclampsia which makes you kind of out of it. After later reading medical records she was not fine but nothing was done about it other than to chart it.  She had abnormal muscle tone, dusky color hours after delivery, grunting-sign of respiratory distress, and poor eating.). She and I spent 2 more days in the hospital and then we got to go home. Going home was more emotional than I had ever dreamed of. Once I walked in the door I could not stop crying. Between the happiness of finally being home and the flood of post partum hormones, I was a mess. I stayed a mess for quite sometime until I finally decided something was not right and I needed to deal with what was going on. I received much support from and those ladies kept me going. Thanks!! Anna remained healthy throughout the winter and flu season which again showed how much of a fighter she was. She stayed tiny though. At her 2 month check up she finally hit 9 lbs and we were so excited. At her 4 month check up she hit 11 lbs. It was at about this time that I started to be concerned because it seemed everybody else's babies were so much bigger and gaining weight so much faster than mine. I know her daddy is skinny but sheesh, she was still wearing newborn clothes at 4 months old. I talked to Dr.Klein about my concerns and he decided it would be best to send us on to a pedi gastroenterologist just to make sure everything was ok. Anna has bad reflux and is allergic to milk and soy so I thought this probably wasn't a bad idea either. We got the appointment and off we went to see Dr. John Baker in Plano. He was wonderful. He gave us a few tips on helping her "bulk up" and changed her reflux meds. Then he said something that in all of my life I do not think I will ever forget. He said that the weight and reflux were problems but that he felt we were dealing with a much bigger issue, he felt that Anna had cerebral palsy and needed to be seen by a neurologist. I wanted to cry for more than 1 reason- partly out of fear and partly because I had feared all along something just wasn't right but I couldn't ever put my finger on it. When he said that it kind of confirmed what I had felt deep down inside for awhile. We left Dr. Baker's office speechless and it was a quiet ride home. Kenneth and I hardly muttered a word. I scheduled an appointment with Dr. Van Miller, the pedi neurologist and then we just had to sit back and wait for a month to pass until our appointment. That was a long month filled with worry, tears, grief, and a whole other laundry list of emotions. Well, I had that list of emotions. Everyone else was still convinced that she was fine. What did I know- after all, I am just her mother (insert bitter tone here.) So the day finally arrived for her appointment. I was nervous but relieved at the same time, I just wanted to find out what we were dealing with and then get on with life. It felt like someone had our lives on pause for a month and I was going crazy. So Anna and I went to see Dr. Miller. We instantly loved him. He was loving, honest, and humble but most of all he was hopeful. After playing with her and putting her through a series of "tests" he decided she does have cerebral palsy. How bad it will be is anybody's best guess- it is too early to tell. He gave us hope that she will do great with therapy though and told me something which I have to keep reminding myself of daily- If we give up hope we are sunk because without hope, you have nothing. He told us we should start her in therapy right away and that maybe within a few years she could overcome most of her disabilities. He told us to celebrate each accomplishment and consider it victory. He told us to look at her individually instead of comparing her to other kids, this would make the victories all that much sweeter. He talked about a mother whose 12 year old daughter has severe CP and that the mother was crying tears of joy when her 12 year old daughter finally responded to her mother's voice. If that mother was comparing that child to other children, how devastating that would be. But to that mother who didn't compare her child to others, that response from her child was like a gold medal at the Olympics. We have to celebrate in this way too. Then we talked of how we should be that way with all children, not just the special ones. I left Dr. Miller's office and I didn't know how to act. I had a million emotions running through my head and they were moving so fast that I couldn't grab on to any one of them long enough to figure out what was going on. I called and told those who knew of the appointment and they all comforted me as best as they could. So if you wonder why I refer to Holland, here is why...
WELCOME TO HOLLAND by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
So here we are in Holland now and here we must stay. We did not make this choice but we will deal with it because we have no other choice. Kenneth and I are in different places emotionally right now. I am sad and angry. He is still in shock and disbelief. Although we are feeling differently we agree on one thing- that we must remain strong to be the providers for Carly and Anna that we need to be. We know that God has entrusted us with a disabled child for a reason and that he has groomed us our whole lives for this experience. He chose us to be the parents of our children and he believes in us that we are up to the challenge. I do not know what is to come but I know my God is strong enough to get us through it, whatever it is.

1 comment:

  1. There are many opportunities/ways for things to go wrong in a pregnancy... age of parents, difficulty in getting pregnant as maybe a sign of eggs that are not so healthy anymore, diabetes in pregnancy, medications taken during pregnancy, bumps or accidents during pregnancy ... the list is endless. As a society we have been led to believe that all pregnancies end in the way we expected them to end. Sometimes, sadly, that is not so. There are so many things that can alter the outcome. Looking for a person to point to must be so tempting. I am glad that you are happy and your little girl seems to be too. Rejoice in this time of happiness and move on. Life has plenty of opportunities for future things to go not so well or just right. Look for the just right things and try to move past what isn't.