I'm making this post from the road on our way to Dallas & Texas Scottish Rite Children's Hospital. We're all a little on edge today, anxious about beginning traction. I have my doubts that Clark will easily adjust to his new situation. I'm more nervous about today because it means, in 4 short weeks, Clark will be put under anesthesia for possible surgery & casting. He's been successful with one surgery already but I hate for him to have to experience more of that pain. I'm not excited in the least. I'm scared and it's not hard for me to admit that. Do I want his hip in place? Absolutely. Do I want to miss out on normal babyhood for the next 4 months? Absolutely not.
This treatment is going to be hard on all of us, so your prayers are needed & greatly appreciated. Especially for Clark, as he's just a tiny baby who has no idea why any of this is happening to him.
Wednesday, September 1, 2010
Wednesday, August 25, 2010
Traction, ahead!
We got the call today that traction is set for next Wednesday. We're nervous about that, but hoping that it is something that will work for Clark. Surgery will be 4 weeks after traction starts. Prayers are certainly needed.
Friday, August 20, 2010
Traction in Range
Our appointment with the orthopedist went well. They want to start traction in September. I'm ready, but nervous. After 4 weeks of hanging from his leg in a little red wagon, my (still very tiny) baby will have to go under anesthesia to either (1) get a giant cast that stays on for around 4 months or (2) have invasive surgery to physically place his hip in the socket and THEN get a giant cast that stays on for 4 months.
On one hand, I'm so glad we have a time line for when Clark's hip will be fixed. On the other, I'm nervous about treatment. Specifically leaving Clark lying in a wagon 24 hours a day, he can only come out 3x/day to eat. Helloooo, babies eat way more than that, in fact Clark eats every 1.5 hours! And, I can only imagine he won't be happy about it all either...he's a lot like me in that he's not a big fan of change.
Thank goodness Scottish Rite is such an amazing hospital, and we also have a wonderful doctor & nurse. It seems they hold our hand through every step of this process. Without that caring approach, I'm sure this would be much harder.
Here are some example pictures for traction & the spica cast:
On one hand, I'm so glad we have a time line for when Clark's hip will be fixed. On the other, I'm nervous about treatment. Specifically leaving Clark lying in a wagon 24 hours a day, he can only come out 3x/day to eat. Helloooo, babies eat way more than that, in fact Clark eats every 1.5 hours! And, I can only imagine he won't be happy about it all either...he's a lot like me in that he's not a big fan of change.
Thank goodness Scottish Rite is such an amazing hospital, and we also have a wonderful doctor & nurse. It seems they hold our hand through every step of this process. Without that caring approach, I'm sure this would be much harder.
Here are some example pictures for traction & the spica cast:
Wednesday, August 18, 2010
We're still here. Life has been crazy lately, hence the lapse in updates. Clark is 7 months old & 11.5 lbs. We had our appointment with the ophthalmologist. Clark has nystagmus in both eyes and goes back for further testing/refracting in October. We should find out a rough estimate of how well he can see & if he needs glasses. This likely won't be great news, but I do believe he has some vision.
The meeting with the pulmonologist went about as expected. His lungs are functioning well, all things considered. They are in the normal range size-wise, but on the smaller side of normal. They're slightly spotty, but clear enough not to be considered chronic lung disease. No wheezing, no crackling. We've got a very lucky boy. The doctor did mention that he has micrognathia which means that his jaw is undersized. This was an AHA! moment for us as Clark has had a hard time nursing well. Thankfully, this is also a condition he can potentially grow out of.
Saturday, July 17, 2010
Wednesday, July 14, 2010
Cardiology and Opthalmology
Today we got wonderful news from Clark's cardiologist, the hole in his heart has CLOSED! Now, in the medical world, they call this spontaneous, but in my book, it's called answered prayers. Thank you ALL so very much for your continued prayers for Clark. With this good news today, we avoid heart surgery and all the complications that could have come with it.
The cardiologist officially released him from his care and he no longer needs daily medication. Scottish Rite gets the all clear on that front for next month when we should be starting traction.
With all good news, it seems, there has to be some not-so-good news. A little while back, I started noticing that Clark's right eye was shaking. I've gotten a couple of opinions and it could possibly be a condition called nystagmus. Nystagmus generally signals some type of underlying neurological issue. We already know that Clark's septum pellucidum is absent and that his optical nerve is at about 40-60% of ideal. In infants, nystagmus generally manifests between 3-5 months of age. So we're definitely in the ball park. Having said all that, Clark now has an appointment on Tuesday with his opthalmologist. We may end up getting a neurology consult, but at this point we're just waiting to see the eye doctor.
As I have said, and will continue to say, thank you for the countless prayers. They mean so much to us and have brought so much healing.
Here's a little taste of what was going on at our house this week:
The cardiologist officially released him from his care and he no longer needs daily medication. Scottish Rite gets the all clear on that front for next month when we should be starting traction.
With all good news, it seems, there has to be some not-so-good news. A little while back, I started noticing that Clark's right eye was shaking. I've gotten a couple of opinions and it could possibly be a condition called nystagmus. Nystagmus generally signals some type of underlying neurological issue. We already know that Clark's septum pellucidum is absent and that his optical nerve is at about 40-60% of ideal. In infants, nystagmus generally manifests between 3-5 months of age. So we're definitely in the ball park. Having said all that, Clark now has an appointment on Tuesday with his opthalmologist. We may end up getting a neurology consult, but at this point we're just waiting to see the eye doctor.
As I have said, and will continue to say, thank you for the countless prayers. They mean so much to us and have brought so much healing.
Here's a little taste of what was going on at our house this week:
Sunday, July 11, 2010
NICU Follow-up /slash/ Everything else
On July 1st, Clark had his 3 month (adjusted age) NICU follow-up. We learned that he has one of these appointments at 3, 6, 9, 12, 18 & 24 months adjusted age. He was 5 1/2 months actual but 3 months adjusted at the time of the visit. It's most accurate to judge preemies based on their adjusted age because it's based on the date they were supposed to be born.
First we visited with the Occupational Therapist who did a whole battery of tests on Clark. There were 5 categories, Fine Motor, Gross Motor, Expressive Communication, Receptive Communication & Cognition. His scores were as follows:
Fine Motor: 4 months
Gross Motor: 3 months 20 days
Expressive Communication: 3 months
Receptive Communication: 16 days
Cognition: 3 months 20 days
Everything is right on target, if not a little advanced for his adjusted age except receptive communication. There could be a couple reasons behind this. First, he may have not been cooperating & it could just be his personality. OR, he could be having some issues either with his vision or neurologically. The therapist seemed to think it was his personality but we're being observant just in case & we're arranging a neuro consult.
Next we saw one of the neonatal nurse practitioners that took care of Clark while he was in the NICU. She gave him the head-to-toe. Checking literally from his head to his feet, listening to his heart, etc. She said that she's VERY good at hearing heart murmurs and that she didn't hear one. We're crossing our fingers that means his VSD is closed. We go for his echo tomorrow and then see the cardiologist on Wednesday. The nnp said that he was doing quite well but she did suggest getting him into Early Childhood Intervention (ECI for short) for therapy. Apparently ECI can be a great help in getting children on target developmentally.
Since we were already at the hospital, we swung by the NICU & Labor & Delivery for a quick visit with some of our favorite people (sorry night shift & others...we'll have to catch you guys next time!)
In the first pictures is Clark's favorite nurse, Mary. She is the most amazing nurse I've ever met, she's absolutely the best & we love her so very much. In the middle are nnp's Amy (holding Clark) and Stephanie. They're very important to us. Stephanie was with Clark the night he came down with psuedomonas, she did a great job explaining to us and our family what was going on and she arranged for us to spend the night in an overnight NICU room so we could be close to Clark all night. Amy was the one who drained the fluid off of Clark's lung the night it collapsed. What a lifesaver, literally! We love Amy.
And in the last picture is Dr Emily Bauer Holthus. This is one amazing doctor, guys. She was the one on call the night my water broke, so she had the job of diagnosing me and telling us the horrible news. When I was transferred to the high risk clinic, she just happened to be rounding there during all my visits. Then when I was admitted to the antenatal unit, she was on rounds there! She was able to follow me all the way through and was even there when Clark was born. I feel so lucky that she was my doctor and got to stay with me for so much of the journey even though she's a resident and they cycle her through all the different OB/GYN places.
Well, so fast forward to now. Clark has been doing well, and is growing a bunch! He's right around 10 pounds. He loves looking at his hands and snuggling with mommy and laughs the hardest in the bath tub and when his daddy tickles him with his beard.
Clark is just coming right along. We still need your prayers though, he still has lots of things to get through. Next month we go back to Scottish Rite to begin traction. Thank you all for caring about and praying for Clark, it really means the world to us.
First we visited with the Occupational Therapist who did a whole battery of tests on Clark. There were 5 categories, Fine Motor, Gross Motor, Expressive Communication, Receptive Communication & Cognition. His scores were as follows:
Fine Motor: 4 months
Gross Motor: 3 months 20 days
Expressive Communication: 3 months
Receptive Communication: 16 days
Cognition: 3 months 20 days
Everything is right on target, if not a little advanced for his adjusted age except receptive communication. There could be a couple reasons behind this. First, he may have not been cooperating & it could just be his personality. OR, he could be having some issues either with his vision or neurologically. The therapist seemed to think it was his personality but we're being observant just in case & we're arranging a neuro consult.
Next we saw one of the neonatal nurse practitioners that took care of Clark while he was in the NICU. She gave him the head-to-toe. Checking literally from his head to his feet, listening to his heart, etc. She said that she's VERY good at hearing heart murmurs and that she didn't hear one. We're crossing our fingers that means his VSD is closed. We go for his echo tomorrow and then see the cardiologist on Wednesday. The nnp said that he was doing quite well but she did suggest getting him into Early Childhood Intervention (ECI for short) for therapy. Apparently ECI can be a great help in getting children on target developmentally.
Since we were already at the hospital, we swung by the NICU & Labor & Delivery for a quick visit with some of our favorite people (sorry night shift & others...we'll have to catch you guys next time!)
In the first pictures is Clark's favorite nurse, Mary. She is the most amazing nurse I've ever met, she's absolutely the best & we love her so very much. In the middle are nnp's Amy (holding Clark) and Stephanie. They're very important to us. Stephanie was with Clark the night he came down with psuedomonas, she did a great job explaining to us and our family what was going on and she arranged for us to spend the night in an overnight NICU room so we could be close to Clark all night. Amy was the one who drained the fluid off of Clark's lung the night it collapsed. What a lifesaver, literally! We love Amy.
And in the last picture is Dr Emily Bauer Holthus. This is one amazing doctor, guys. She was the one on call the night my water broke, so she had the job of diagnosing me and telling us the horrible news. When I was transferred to the high risk clinic, she just happened to be rounding there during all my visits. Then when I was admitted to the antenatal unit, she was on rounds there! She was able to follow me all the way through and was even there when Clark was born. I feel so lucky that she was my doctor and got to stay with me for so much of the journey even though she's a resident and they cycle her through all the different OB/GYN places.
Well, so fast forward to now. Clark has been doing well, and is growing a bunch! He's right around 10 pounds. He loves looking at his hands and snuggling with mommy and laughs the hardest in the bath tub and when his daddy tickles him with his beard.
Clark is just coming right along. We still need your prayers though, he still has lots of things to get through. Next month we go back to Scottish Rite to begin traction. Thank you all for caring about and praying for Clark, it really means the world to us.
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