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Letter to the Support Group for Caroline's Syndrome

Thursday, June 14, 2007

Below is a letter I wrote in April for the 9p- Support Group Yearbook. It's a summary of what's been going on with our family. There have been additional developments since April that I'll post later.


Caroline was born at 10:33 a.m. on January 17th by emergency c-section. I was admitted into the hospital the night before due to decreased fetal movement and was induced, which was fine with me because she was 9 days overdue! She did not tolerate labor well at all, so my OB decided to perform a c-section. I will never forget the first cries she made – there were three of them, so precious and so weak. I still didn’t think anything was wrong, until I realized that I kept waiting for people to be happy and no one seemed happy – everyone seemed serious – no smiles. After a few minutes, my doctor leaned over the curtain and told us that it looked like she may have some kind of syndrome. I was so drugged up that I thought he was joking, but then the neonatologist came up to me and said that they were moving her into the NICU (luckily this hospital had a level III NICU). They showed her to me briefly and then rushed her away. My husband and I decided that he would go with her, while they finished stitching me up.

Based on her symptoms and physical appearance (low-set ears, trigonocephaly, eye tags, etc.), the doctors initially gave my husband the diagnosis of Trisomy 18, a fatal chromosomal disorder. At 12 hours post-delivery, I finally got to be rolled into the NICU to see her for the first time – a truly bittersweet moment. She was such a delicate, tiny little girl (born 5lbs., 13 oz., 18 inches long), with tons of red hair, just sleeping away, yet working so hard to breathe, even with the ventilator in. I could not believe that this was my baby, so sick and full of leads and IVs and on a vent, and I could not believe that she would leave us so quickly. For the first 10 days of her life, we kept getting told that our sweet girl only had a short time with us before she passed way. We kept trying to have hope, but those first few days were extremely difficult for us – the feelings of despair were almost absolute.

Luckily, we prayed for a miracle and it happened! Her genetic test results came back and showed that she did not have Trisomy 18 but that she had 9p-, with additional genetic material from chromosome 1. It was such a joyful moment for us. From that time on, we were determined to try to stay positive about any troubles ahead and just be grateful that we got the opportunity to raise Caroline.

As I said earlier, in the NICU, she was on a ventilator for the first few weeks of life. She couldn't breathe very well because of, among other reasons, low muscle tone and pulmonary hypertension, which resolved in mid- February. She had some heart issues; most are now gone, although she still has an ASD and a slight murmur. She came off of the vent at about two and a half weeks old, worked up to full feeds on breast milk through a tube in her nose, but had problems drinking enough breast milk. She has the ability to suck and swallow with a bottle, but she works very hard to get down only a little bit of food (currently, the most she has ever done is 23 ccs – then, it was more like 10ccs). So, we decided to put a g-tube in her. It was a very hard decision to make, but the doctors and OT said that it would help her get home quickly and, once there, she could safely build up strength and be nurtured properly.

Other concerns were discovered in the NICU. She had an MRI that showed that she could have some developmental problems based on possible polymicro gyria, a brain condition that could cause developmental problems and/or epileptic seizures, but they can't be sure of anything and will do another check in 6 months. In the NICU, the eye doctor diagnosed her with optic nerve hypoplasia (ONH), which she said could mean very little or it could mean she will be close to blind. Right before she was released, Caroline started to have really low blood sugar levels in the mornings. Her bolus feedings were changed from every 4 hours to every 3 hours, and that seemed to help. She also failed two hearing tests in the hospital. Finally, we learned she may have cranial stenosis; we will need to see a cranial plastic surgeon soon for follow up.

At exactly 7 weeks old, on March 7th, Caroline came home with us. What a surreal car ride home – we felt like we were kidnapping her! But, she was all ours, and we learned quickly that we were capable of caring for Caroline by ourselves – but that doing so is hard work!

Since she has been home, her weight and blood sugar have been her main problems. She came home at 7 pounds, 10 ounces. Three weeks later, she had only gained 2 ounces. Our GI doctor changed her schedule from bolus feedings every 3 hours to every 2.5 hours with a continuous drip feeding at night. That change helped – a couple weeks later her weight was 8 pounds, 2 ounces. We will soon start adding calories to the milk as well. After we’d been home for a week or so, she started to have low blood sugar in the mornings (40s), so we moved up her first morning feeding to start an hour and a half after the drip feedings end, rather than 2 or 3 hours after. That seemed to help.

We’ve also had updates from other specialists since being home. Her hearing was rechecked, and she can hear! Her right ear is normal, and her left ear may have mild to moderate hearing loss, although the doctor thinks that could resolve with time – we have a check up in a few months. Caroline can also see! However, she is near-sighted and tracks objects slowly. The ophthalmologist said Caroline may not have ONH - because Caroline is so small, her eyes may just be on the small side. She referred us to a retinal specialist for further information. Caroline came home on oxygen and theophyllin. She’s now off of theophyllin and, in May, we’ll try to wean her off of oxygen.

We’ve started using Early Intervention Services. A speech pathologist comes by every few weeks to work on Caroline’s feeding. She does pretty well; on average she now drinks about 15ccs per feeding. Some days it’s more like 20ccs a feeding, some days it’s less than 5ccs. We try to remember that our girl has been a constant rollercoaster, and, despite all of the ups and downs, she is usually making long-term progress. Soon, we’ll start her working with a physical and occupational therapist.Obviously, Caroline’s diagnosis and medical issues have been a lot for us to absorb and deal with, but I think we're up for it. We are almost starting to come to a sense of normalcy again, and there have been many hours where we can put aside our concerns and just enjoy our sweet baby. She hasn’t really smiled for us on purpose yet (at almost 3 months) – we can’t wait to see her cute smile more often. We give her baths, sing to her, hold her, and rock her to sleep. We can tell she will teach us a lot and help us become better people.

We appreciate all of the support we’ve received from the 9p- board so far. When we found out about this organization, we were thrilled to hear that, even though the doctors had no idea what to tell us about our girl, there are people out there that have been where we’re going. Thank you.

8 comments:

  1. Erika & Bryce, thank you so much for sending us your blog. I will put it in our favorites and check it every week. I loved reading your letter to the support group. It's difficult to express my feelings as I read it, but I just have to say, "WOW!" You are both amazing to be able to do the things you have and are doing, to care for Caroline. The lessons you are learning...it is humbling.

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  2. Thanks for your letter. I never ever thought out beautiful granddaughter would have such a challenge in her life. I admire the resolve, dedication and love you manifest in Caroline's care. She is special and so my dear Bryce and Erika, so are you! Love, Grandma

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  3. It was great to be able to read your story. You guys are amazing and it is so obvious how much you love your sweet little girl!

    I'm glad you enjoy reading our blog!

    BTW, my baby (now 21months) is a redhead too! You gotta love 'em.

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  4. Carrie - I'm so glad you were able to look at our site and read our story. A lot has happened since our April letter - so look for an update soon.

    I do really like your site - interesting and fun. I'm so jealous that you guys all live or lived in NYC - what a great city!

    You do have to love redheads - I can't wait to dress mine up as Strawberry Shortcake for Halloween.

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  5. Thanks for sending us your blog. Lauren and I are up way too late (but worth it) right now reading about Caroline and you guys. We can't wait to see you guys next month!

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  6. Hi Adam! I'm so glad you guys like the blog - sorry you were up so late though:). It will be great to see you both next month - we have a lot in common to discuss, even more than before.

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  7. I'm so totally moved by the story of your young family. It's so touching, poignant and courageous.
    I well remember the hurt one feels when one's child is hurt and that so sadly has been and continues to be just central to the many procedures required in Caroline's
    struggle to live and grow. I'm so happy you have a few kind souls, Mom in particular, who can come and spell you off for some precious break time. You described a session where hurtful things were done to Caroline and then you said your hopes were that she would someday be able to forget and learn to trust the world and you! Blessings and love to all of you and particularly to little Caroline.
    Aunt Vella

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