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.

We go to see the orthopedist tomorrow. I don't think any treatment will start but he will have an ultrasound or xray and consult with the doctor.  He has to be bigger & heavier to start traction.

Clark is 6 Months Old!

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:

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.

Clark Laughing

I don't really mean to have these huge gaps between updates...it's just the way things have been happening lately.  Hopefully there are some of you who still read, and if so here's the latest......

Thursday we went to Scottish Rite for the last time for a couple months.  The pavlik harness didn't work and we were told about the next step.  I must admit, I kind of laughed while the nurse was telling us about this, but honestly I think it was so I wouldn't cry.  Apparently the next step is traction.  We get a wagon with pvc pipes rigged on it, Clark's legs are wrapped and he's suspended by his legs from the pipes.  He can come out 3x/day to eat.  Hello...for one thing Clark is an attached baby, he's very rarely not in someone's arms, and for another thing....babies eat more than 3x/day!!!  I had prepared myself for a 1/2 body cast but I think this traction thing sounds worse.  He will do that for a month.  But thankfully not until August.  I'm asking for lots of prayers that the traction works, because if not, the next thing is manual placement or surgery.  Both of which require him to be fully sedated.  I'm not exactly sure of the process for the traction, but it sounds like an intense procedure too.

The growing boy

Most of you probably know that I've been a nanny for my nephew Kade since he was about 3 weeks old.
I was there when he was born, and being together so often has led to Kade and I being pretty close.  I missed him so much when I was on bed rest and in the hospital.  Thankfully my grandmother was able to help me out big time and keep him during that time and throughout our NICU stay.  I'm so happy that now things are normal enough around the house that Kade is back with us when his mom is at work.

Finally...the boys are together!!

Hopefully they'll be best buds :)

F

Ahhhhh!!!!  Sorry it's been forever and a day since I posted an update!  So many things have been going on that I just haven't had the time to really sit down, think and translate what's been happening into a post. 

My cousin Kyle graduated from high school, we took Clark to graduation and the big party afterward.  That was really exciting and exhausting for all of us!  But Clark did really well, and the party was outside in the 90 degree weather. 

 Clark is now 9lbs and it seems he's growing a little more every day.  We had another appointment at Scottish Rite yesterday.  His doctor is pretty confident that the harness isn't going to work, even still we will be "trying" it for another week.  After that,  we will have a little break from everything while the doctor confers with Clark's pediatrician and cardiologist to determine the right time to start manual placement.  That could be weeks, or months...we're just not sure yet.  The biggest factor is that he will be under anesthesia during the proceedure.  Either way they will get the hip in, whether using surgery or not.  They put him under so they're prepared if the hip doesn't go in manually, they can just start surgery.  It's scary for us because surgery is such a huge deal for such a little baby, especially one with compromised lungs and a heart issue.

After hip placement, they will put him in a cast for 6 weeks.  Then, because of growth, stinkiness, etc, they change the cast out and we do another 6 weeks.  Then we repeat that again, for a total of 18 weeks in the cast.  Hopefully after that, the hip is in, and stays in.  Please pray for us all during this.  Especially Clark, he's been through so much already.  He needs some normal.

Clark loves baths...he actually laughs out loud!!