Wendy is almost 18 months old now and still very nonverbal. She can make simple one syllable sounds, like “pa”, “da”, “ma”, etc. however, she can’t really communicate with us. We decided to work on baby signing. Surprisingly, the first thing she picked up was “eat” even though she doesn’t eat herself (at least not by mouth). We’ve been feeding her a bit by mouth, in practice for her swallow study because impractical for us to think she’ll just get to the study and know how to eat without working on it beforehand, and she has learned that raising her hand to her mouth means “eat”. Today we tried carrots mixed with a little oatmeal (she tends to do better with a thicker consistency) but she gagged quite a bit, so we will try again later. Her swallow study was moved until April 8 since she’s been sick (and still is) with a cold, so her nose is stuffy and she’s having more difficulty swallowing.
I know I haven’t been updating the blog as much as I used to but for simple things, it’s easier to just post a quick status on Facebook. I will try to get back to writing more because I really want to keep this blog going.
Friday, March 15, 2013
Warrior for Wendy shirts available!
$20 each. (Add $5 for shipping)
baby’s onesies NB-18M
children's (2-4, 6-8, 10-12, 14-16)
How to order and pay:
Payments can be mailed to:
1037 Bakers Ferry Rd
Elberton, GA 30635
PayPal as gift to:
Or taken to my mom at Capell Automotive in Elberton.
Please leave a note with your size and name (and address if you are not local).
Many of you have probably seen or heard about Tripp on Facebook. He is one popular little boy. His family also needs continuous prayers, which is why I’m writing this blog about him.
For those that don’t know what happened, here’s Tripp’s story in his mothers words.
Bill and I met in 2006 and got married in 2007. We were both living in Asheville, NC. I fell head over heals for him and still feel that way 5 years later. He is an amazing husband and father.
I was already 30 when we were married, so we wanted to start a family. Now I realize that is not as easy as it sounds. We thought we had it all planned out. And each month was met with huge dissapointments.
So finally we decided to go to a fertility clinic and were told we were perfectly healthy, but since we had been trying for so long, they would help us. Nine months later, we had a perfect baby boy. (I had a pretty horrible pregnancy, was on bedrest, had to walk with a walker and sometimes had to travel by wheelchair. I developed a muscle disorder, then placenta previa, so I had to have a vertical C section. So you might notice my huge scar in some of the bathing suit pictures posted.) But it was all worth it to have my baby.
So a year and 1/2 later, we decided to have another baby. Went back to the same fertilty clinic and got pregnant with a baby girl. Ella Mary Halstead. Her due date was set for Oct 2, 2012. Yep, the same month as Tripps accident. But I had a misscarriage just a few months after being pregnant. At that time, it had been the most dramatic thing I had ever personally dealt with. I cried and cried, couldnt sleep, eat, ect. Anyone that has gone through this knows what a nightmare it is. And we learned soon after that, if we didn't try again immediately, my eggs would be gone. But we were too devastated to try at that point.
Dr's don't know everything, but to be told Tripp is the only child I would ever carry inside me, make this accident even worse. I couldn't imagine losing my one perfect miracle. So we are so thankful that he is still with us. No matter what condition he is in. The Dr's still won't tell us how far he will go. They just say with this much brain damage, most children don't survive. So that is why we pray every minute of everyday. No one knows what he will be able to accomplish.
Some of you might not even know what happened the day of the accident...He was playing on the playground at daycare and a huge limb fell out of a very high tree. It fell on his head and crushed his skull into many pieces. They took him to Winder-Barrow hospital and then flew him to Egleston Childrens hospital in Atlanta. As Bill and I were driving to meet him in Atlanta, I don't think we spoke 10 words to each other. We were scared and we just prayed. We honestly didn't know how bad it was.
As soon as we got there, they let us see him. He looked perfect. No blood, no cuts, he looked so peaceful. Then the Dr started telling us how bad it was, and it took me some time to realize they were saying he could die. It was a slice to my heart and soul. So the next few hours after that were a total blur. When I dropped my happy, perfect boy off at daycare that morning, it might of been the last time I saw his smile or his eyes open or him awake. I will never take another day with my baby for granted.
So he survived surgery, then the next 24 hours and made it til Friday. Then he took a turn for the worst and they told us to say our goodbyes. That was the worst day of my life. To think he had survived this and then given no hope. But Tripp proved them wrong, he is a fighter and he pulled through and we have never looked back. He is in rehab now and even though he is making tiny babysteps, he is moving forward.
I cherish every moment with him. He is my whole world and I want him to know how much he is loved. I didn't want this post to be all sad, I wanted everyone to know how important every single day is with your loved ones, hug them, kiss them, let them know how special they are to you. Even if Tripp hadn't pulled through, I can honestly say there wasn't one single day of his life that he wasn't hugged on, kissed on and told "I love you". He is a very special boy and thank you all for loving him too.
You can read more recent updates on Tripp’s Facebook page. An update from his mother, Stacy, that I read today truly broke my heart. She said, I look at my sweet sweet beautiful baby and can't believe this is my child. Laying there motionless, no expressions, no movement of any kind, no noise except the occasional scream or cry. No recognition in his eyes. It made me realize that yes, the trials I may face with Wendy and have faced with Wendy have been and can be just as difficult as what they’re going through, but at the same time, I feel like its easier for me. Not because I am stronger than Tripp’s mother, but simply because I was prepared. I knew at 23 weeks pregnant when I had that amniocentesis that something was wrong. I knew before I even gave birth to my baby that Wendy had a one of a kind unbalanced chromosome translocation. I knew that she was the only baby in the world to have this. I also knew she would face and have many disabilities. I can’t imagine having a “normal” child and all of a sudden having everything change in one instant. And that’s exactly what happened to Tripp and his family.
So tonight when you pray, not only am I asking you to pray for Tripp, but pray for his mother and father too. Pray for peace within them, strength for them to continue on this journey, and courage to face the things they thought they would never have to.
Monday, March 11, 2013
Since Wendy’s surgery, she’s been doing really well. She seems to be recovering quickly and enjoying her time without a colostomy bag. She’s also crawling so much better! I told myself I was going to start taking her out more once she got rid of her bag because it would be easier and I’ve kept to that promise. Last week, I took her to Zed’s family’s quarry and left her with Janet (Zed’s aunt) and Suzanne (Zed’s cousin) while Zed and I went to lunch. Yes, Zed and I actually went to lunch, BY OURSELVES! Since Wendy’s been born, Zed and I haven’t done much together. We’re trying to change that. Also, I’ve taken her to visit her great-grandparents this past weekend and we went on a shopping trip to Walmart. I know that doesn’t sound like much, but I used to dread taking her to the grocery store because if her bag came off, we’d have to leave all of our un-bought food and take her to change her bag. A leaking bag is not like a dirty diaper. A leaking bag cannot wait.
Not much else has been going on with Wendy. She wasn’t acting like herself last night and she woke up with a fever of 101, but I’m hoping it breaks soon and isn’t a big deal.
I’ve been trying to post more videos of Wendy, so be sure to check out my YouTube channel. http://www.youtube.com/user/jamiemclanahan?feature=mhee
Friday, March 1, 2013
In honor of Rare Disease Day, I wanted to do a blog on all questions people may have about Wendy. So here goes…
When did we find out Wendy was “sick”?
They first noticed abnormalities at my 22 week ultrasound. They found Choroid Plexus Cysts in Wendy’s brain. CPCs are a fairly common finding in pregnancies and usually disappear before the 3rd trimester, however we wanted to see a specialist in Nashville to make certain it wasn’t anything to worry about. At the appointment in Nashville, at 23 weeks, they said the CPCs were still present and she had fluid building around her heart. Those two things are usually markers for Down Syndrome (Trisomy 21) or Edwards Syndrome (Trisomy 18). Trisomy 18 babies usually don’t make it to term and the rest usually don’t live past a year old. We decided to go ahead with the amniocentesis because we wanted Wendy to have the best care available to her when she was born. At 25 weeks we found out there was an issue with her 7th chromosome, but they were still doing further testing to find out what exactly was wrong. We didn’t get the full results until 31 weeks, after I was already in the hospital.
Why did my water break at 29 weeks?
Wendy wasn’t swallowing amniotic fluid like babies are supposed to, so I was producing more and more fluid and it had nowhere to go. Therefore when I ended up with enough fluid for triplets, my body couldn’t handle it anymore, so my water broke.
Was she a preemie?
Yes, she was born at 33 weeks and 6 days, however, being premature isn’t what caused her health problems. Her chromosome abnormalities did. And most likely, her chromosome abnormalities is why she was born so early.
Why did she have a colostomy?
Wendy was born with an imperforate anus, which means her bowels were a dead end. There was no anus at all. The first step to correct this is to place a colostomy. The second surgery was to make an anus. And finally, the third was to connect her bowels to her anus and remove the colostomy. The final surgery was done February 21, 2013.
What other health problems does Wendy have?
Other than the imperforate anus, she has intestinal malrotation, gastrointestinal reflux, mild kidney reflux, microcephaly, and feeding difficulties. She did have swollen kidneys and ASD (atrial septal defect, a heart defect) which both fixed themselves.
Why does she have a feeding tube?
Wendy has a feeding tube because she could never swallow formula in the hospital. They suspected aspiration, so she needed a swallow study before we could start therapy to teach her to eat. She had one at 4-5 months old, but was not able to take enough liquid for them to be sure if she was aspirating or not. She has another swallow study scheduled for March 20.
Will she ever eat by mouth?
Possibly. If she can pass the swallow study we will begin feeding therapy and we hope she will be able to learn to swallow and breathe at the same time. However, if she cannot pass the study, it would be unsafe for her to eat by mouth.
Does she have any siblings and do they have medical problems?
Wendy is an only child. She was our first and will most likely be our last. Wendy’s genetic mix up was a random occurrence (neither me nor my husband have genes like hers) and they said they couldn’t tell us if we decided to have another child if it would be like Wendy or not. However, my husband and I have decided Wendy needs my full attention, so it would be best if she was our only one.
Does she still have things that are undiagnosed?
Possibly. Right now, she doesn’t have any issues going on that aren’t diagnosed, but that doesn’t mean other things won’t come up in the future.
The biggest question people asked was, since she has a one of a kind anomaly, what will her future be like?
We’re not really sure. Doctors can’t tell us what to expect, so we just take things as we go. So far, Wendy has nothing life-threatening. Many children with a 7p22 deletion (which is just one of Wendy’s 4 genetic anomalies) die from a heart defect at a very young age. Wendy’s heart defect (ASD) fixed itself when she was a baby.
And finally, what worries me most about her future?
I honestly don’t have many worries. As long as she is living a good quality of life, I will be happy. My biggest hope is that we can spread awareness, so people are more informed about children like Wendy. If more people are informed, I feel like more people will accept these beautiful, unique children. I feel like Wendy was given to me for a reason and I plan on advocating for her and sharing her story with as many people as possible.