Thursday, August 11, 2005

Beloved Life - Peanuts Story

I have had this written up since Peanut was three months old. I never showed this to anyone, But here it goes:

When I first found out I was pregnant, I could not believe it. How could I possibly be Expecting? My first two kids were my miracle babies, conceived following infertility treatments. There was no way! But sure enough I was. Things looked good. I was sick the first five months, just barely gaining any weight. From the moment I found out I was pregnant, I was waiting for the other shoe to drop. It was too good to be true. So fine, I was really sick during the pregnancy, but something just felt off.

At 20 weeks, I went for my ultrasound. That's when the other shoe started to drop. They found an echogenic cardiac focus, a calcification of one of the ventricles, which is a soft marker for Downs. We were encouraged to speak to our ObGYN regarding our options (???!!!) As we drove home from the ultrasound I was hysterical, I called my obGYN, who's a friend, pulling him from another patient to cry hysterically over the phone the results of the exam. Amazingly he understood me through tears, and reassured me everything was fine. We'd just go back and do the triple screen (which I never do, cuz it wouldn't change anything). That too came back clear. But in my heart of hearts, I knew something was off. Everyone told me to forget about it, and just enjoy the rest of the pregnancy, everything would be fine. I must say that once the morning sickness passed, I felt great. This was the first preganancy I actually felt good and enjoyed being pregnant.

At 35 + weeks, I went to bed early on a monday night in April, around 9pm, feeling especially tired. When I awoke a little over an hour later, my contractions were as strong and as close together as they had been for the last few days. As the next contraction begins, I roll over to go back to sleep. Before long I feel that magic Pop! and my water has broken. Knowing that I am an automatic admission , I call for my husband and tell him to get everything ready while I phone the Md. Finally, after what seems like forever, my mom arrives and we kiss our two kids goodbye, telling them we are off to get their new baby. When we get to the hospital, we are moved quickly from the er to the birthing center and the triage unit. We are stuck sitting in the waiting room for over an hour. This was not pleasant as my water had broken, not to mention very painful. Finally we are taken back into a room, and wouldn't you know my contractions space out. When the md arrived, I was so relieved to see a face I knew. She ordered pitocin, as I was just 3 cm, an epidural (cuz I demanded one) and left.

We are in the Labor/Delivery/Recovery room and the anesthesiologist comes in for my epidural. As it turns outhe knew my husbands cousins and he and my husband hit it off talking about Meat (buffalo, beef, my apologies to all the vegetarians!). The Epidural worked perfectly, before long I was ready to go. The Md comes in and the show is on, after a mere three pushes baby is here. The cord is wrapped around its neck three times, md undoes the cord, and places the baby on my belly. It's a girl! The md has a worried look on her face. She wants to have the baby checked she's not breathing very well. As they take the baby over to the warmer to have her looked at, I realize I was right. She had been so floppy when she came out. I knew right then and there she had Downs. I remember them bombarding me with questions, Did we have any genetic testing done? Was the test normal? and then the dreaded words, We think she has Downs. At that moment my heart stopped. My perfect 7 hour labor and 3 pushes delivery, my perfect pregnancy with no complications, my being able to concieve and carry to full term came to a sudden unbearable crash. What?! no. not my baby, how can this be? what will I do? What does this mean for my dreams of a perfect life? I knew it was too good to be true. Life is never that simple.

I think it made it more difficult when the mds beat around the bush. They would say she looks like she has because of x y and, z, but we could be wrong. I was very upset. But I knew I had to nurse my baby. I needed to hold her and cuddle her. After a while, I was able to hold her (she needed a little O2), I put her to breast. As I nursed her, I gazed at my little bundle of unknown consequences, unknown medical futures, a great big question mark. As she opened her eyes and looked up at me, I felt almost like I was in heaven, as if I could see clouds in her eyes (later I learned these were her cataracts). For almost 36 hours following her birth, I cried. I was so afraid of the unknowns associated with DS. I had no idea what to do I was more scared then I had ever been in my whole life. As the tears came, so did comfort. As family and a couple of friends came to meet the newest member of our family, they asked to hold her. Offering support, both emotionally and physically. We were told the sky is the limit; money is no object, because everyone would pull their resources to help. They would do anything we needed to help this baby live to the fullest extent - whatever that may be. One friend came daily, with ice cream, another came with hugs and an open ear, and yet another called from out of town and came in early (on the way back from a trip, and into the office) in the morning to spend time with me. These are amazing friends.

As our families rallied around us, we came to realize that things would never be the same. As the phone remained silent. No one was calling. A couple of friends came to visit. We had not hidden the fact that our baby had been born with DS. When we had called from the hospital to tell people we told them right up front, "we have a new baby girl, but you should know she was born with Down syndrome." People did not know what to say or do. So many chose to do nothing at all. No flowers were sent, no cards, no balloons, no presents. Absolutly nothing.We realized who our real friends were. The ones who accepted us for who we really are. Not the superficial friends. On the flip side, the strangest thing happened. People with whom we never imagined any common ground were suddenly our biggest supporters. Coming with ice cream and a shoulder to cry on. We got so much support from individuals, couples, families. We began to feel we were not alone. Just as we were settling in we got the news her heart was fine, BUT she had bilateral congenital cataracts, and surgery was to be on Monday. My baby would be five days old, going in for surgery. I could hardly beleive it. Luckily, as we got the news, friends of ours who had driven down from cleveland, were with us. They reminded us that it was not her heart, thank god her heart is fine. It is just her eyes, small, but we needed to count our blessings. Let's take it one day at a time. What a help!. Suddenly, nursing became a problem. Latching became troublesome. I spent two days working to get it just right. We did everything, Syringe freeing, SNS, finger feeding, cup feeding. I was pumping every two hours.I took this very personally for two reasons. First I am a lactation consultant by trade. Second, I knew my baby would need every ounce of extra immune support she could get, my milk would fill the ticket. Not to mention It was something I could control. I needed to be able to control some small aspect as my world was spinning out of control.

As we tried to come up with a name for our special baby my husband and I realzed a few things.We needed a special name for our baby. We had been given a special baby, a special soul whom god had deemed us worthy to recieve. For whatever reason we were chosen. We may never know why, but it is in His master plan. We are so lucky we realized, she is destined to change us in ways we may never know. She will touch everyone she comes into contact with in many different ways. She is special. We love her no matter what. She is a beloved life. Thus her name means beloved life. A few days later, after being under the bili lights due to elevated bilirubin levels, we were getting ready to be discharged. Only to be readmitted in Childrens Hospital for her first of two surgerys.

In the preop waiting room the surgeon marked her eye for lense removal, and for the second time in five days, my heart dropped. I kissed her goodbye and they wheeled her away to fix her eyes. Waiting seemed like eternity, but 2 and a half hours later, the surgeon comes out and says everything went well. In the post op, she was covered in wires, tubes, o2 and iv's, I just wanted to hold my baby and nurse. I did just that. That night I ended up back in the er myself, because they thought I had begun to hemmorhage. My friend (the ObGyn) met me at the er so I wouldn't have to wait for hours to be seen and could get back to my baby sooner. I am eternally grateful. I was back within two hours at my babies side, I never even missed a feed. Two days later we repeated the surgery, That night when she woke up to nurse, with a tv on for light, I noticed something I had missed before. When she opened her eyes she looked up at the lights playing on the ceiling in a way she had never done before. I relaxed. In that moment I knew we'd be ok. We were sent home the next day.

16 months later, as I nurse my little peanut to sleep (yes she is still breastfed, we were successful in the end), I look at her, and she looks at me and I can't believe she is here. In the short time that she has been here, she has touched many lives. We were right. Our life has changed. It changed the moment Peanut was born. But it hasn't changed in a bad way. Quite the opposite. She is the light in our lives. We have come to look inside people, not judge by the exterior. We learned what true friendship means, and that it is not important who has what car/dress/shoes. We have grown our extended family , coming to include individuals we never thought we could be so close too. What does matter, is that we all have each other and our health. Everything else is just icing on the cake. We are immensely happy with our cake. Who needs icing?

Now when I look at Peanut, as she sleeps in my arms. I see joy, admiration, inspiration, spirit, stamina, strength, and unbridled, unabashed emotion. I can't imagine ever crying over such a cute, adorable delicious amazing baby like Peanut. We All love her so much! ( her siblings are forever crushing her in gigantic hugs). Nothing could ever change that.


Julana said...

It is very giving of you to share your story. Thank you.

(Sorry. I am trying to figure out how to edit my comments.)

BStrong said...

I love you. Beautiful post, and for your readers, I too was in the delivery room:)

Naomi said...

Great story, I'm right there with you. Thank you so much for sharing it.

Mel said...

What a lovely story. (I'm here by way of Julana's site.) Thank you for sharing it.

Belovedlife said...

I'm Glad I was finally able to share my story (Peanuts) Story with everyone. Reading it takes me right back. I only wish that following her birth I had been in contact with some of the websites I have found recently. Especially the Aphakic froup on Yahoo and Unomas21. They would have made the whole cataract hing a little easier to go through. As it seemes we were the only ones in our city who were dealing with DS and Cataracts.

Anonymous said...

What an amazing story. For you to commit your feelings so hostely to a public forum takes much guts. You have come such a long way. You shoulc be proud of yourself for all the work you've done to get to this piont.
God Bless!

Tara Marie said...

Thank you for sharing Peanuts story......there is an amazing magic with T21. I too felt in during my pregnancy, long before the ? of T21 was even presented via a soft maker like you had with Peanut.

I am so honored to have found your blog and be able to share in the wonder and joy that you and bstrong have found by the birth of your youngest daughter.

Peace, Tara Marie & Emma Sage

P.S. I nursed Emma Sage for a long time too!!! I'm so glad you two have that bond.

Kim Ayres said...

Thank you for sharing your story. Our daughter, Meg, who has Downs, had to have open-heart surgery at 5 months old to correct a hole in the heart. Fortunately the operation worked a treat and she's a happy, healthy 7 year-old now.

I have a friend who was born with congenital cataracts but was able to have surgery about 8 years ago to correct it. I hope Peanut will be able to when she's older.