A New Heart

Many of you have told me how much you enjoy following along on Claire's journey [thank you for the encouragement!!] and, admittedly, I haven't been doing very well with updates. So, inspired by a fellow "Mama Warrior" who has this whole blogging thing down far better than I do ... here is my attempt to update, educate, and *hopefully* inspire and encourage! As always, thank you for following along, it truly is quite humbling.

Claire is now three weeks out from her open heart surgery and she is doing very well. 

Last week she had appointments for weight check (she had gained 7oz in one week! putting her at 10lb 3oz), dietician (no changes since her weight gain was so great!), OT, 4 month well child checkup, and her 4 month neurodevelopment evaluation.

During OT, Claire lifted up her head while flat on her tummy for the first time (and mommy cried!).  It took quite a bit of warm-up and activation exercises and some careful positioning on the part of the therapist but SHE DID IT!!  Our therapist taught me how to do it and what support she needs and we have been practicing a few times a day since, she's able to do it for a couple of seconds at a time now but she's getting stronger every day. Here she is!:

Her well child check-up mostly consisted of us filling her pediatrician in on all that has happened in the last 2 months since we saw him last.  She was not able to get her vaccinations because of the blood transfusion that she received (we have to wait 6 weeks post-surgery) but he said that she looks great!  We will see him again in 3 weeks for vaccinations.

Her neurodevelopment evaluation went well also. It was a looooong appointment and we were at Mary Bridge, between this and another appointment, for a total of 6 hours on Tuesday. Big brother Levi, who is our "appointment buddy" these days, ran out of things to do and pretended to take a nap!

Now that her heart is fixed and she finally has the strength to do it, they have recommended a more aggressive therapy approach and wrote us a referral for the CTU (we are currently using A Step Ahead which is a service through Birth-Three). Her lower body strength is amazing and the therapist said that some of her skills are even ahead of what they would consider to be "typical child development!" (rolling from her back to her stomach, tucking her knees up under her chest while on her stomach, raising her feet to her hands while on her back or side). But there are other areas where she needs some extra help (lifting her head, upper body/arm strength, intentionally reaching for and holding onto objects). I forget the word for it now but her tibias have an increased curve and her feet turn in slightly, all this means is that she will probably need to wear some braces when she's learning to walk to help her learn to compensate for it - we can handle that! Here she is rolling over:

Claire LAUGHED for the first time last week as well!  I told her daddy to stop trying because I knew that he'd try once or twice and get her to laugh, even though I have tried hundreds of time and nothing .... and, of course, he did!  But I was too busy laughing and crying to be [too] mad at him.  Let the record show: Claire's neck is very ticklish!

In addition to her 4-7 appointments each week (spread out over 3-5 days), Claire also gets the [usually] fun privilege of accompanying her siblings on their shenanigans - school events, soccer games, drop-off/pick-up, YMCA classes, etc.  [The therapist asked me today if Claire has a consistent nap / bed time routine, ummm... no! We don't have time for that ;)].  

Here she is napping at Anna's harvest feast at school:

And here she is, staying up late, for trick-or-treating!  Levi was a pirate and the girls were fairies <3.  

Now onto this week [so far] ... We started on Monday with a weight check in the GI clinic, an appointment with her dietician and we visited her eye doctor.  Claire gained 4.8oz since the last weight check (one week ago) putting her at 10lb 8oz, still "off the charts" but we're heading in the right direction and her daily weight gain was right in the range that they want it to be!!  The dietician was pleased with her weight gain so the only change she made was to increase the rate of her pump to 29ml/hr in order to keep up with the higher calorie demands that she will have as she continues to grow. The risk in increasing the rate (she's already on the high end of what is acceptable for someone her size) is that it could move too quickly through her intestine and she would not be able to absorb all of the nutrients but she seems to be tolerating it okay.  

The eye doctor said that she looks great so far. Her tear duct is still clogged but we won't address that unless it still hasn't fixed itself when she's closer to one. He wants to see her again in 4 months.

Our only appointment-free day this week was Tuesday (yesterday) and we finally got to go back to MOPS!  Because of Claire's surgery and being in isolation, this was only our second time being able to go.

Today was our first day at the CTU. We loved it and feel like Claire will be getting excellent therapy there! She is starting with weekly PT (Wednesdays) but the therapist mentioned that she feels like she will need OT as well. We hope to also move her speech (for feeding) there as well so that we don't have to travel to Tacoma quite as much (hopefully only 2-3 days/week instead of 3-5) but until we get the NJ/G-tube situation figured out, we have to keep everything consistent.

Speaking of her feeding situation, I get asked about that (and how she sleeps) more than anything else .... hopefully this will answer your questions.

Here is our nighttime set-up: 

Now that Claire is rolling all over the place and has to be hooked up to her pump/tube all night, we co-sleep. Justin is at work during the night and the only way that I can feel safe knowing that she isn't getting tangled up, strangled, etc. is to sleep [or not sleep!] right next to her so that I can feel when she moves and check on her quickly and easily. 

The picture is dark but that's an IV pole with her feeding bag hanging on it and the light is her pump. It beeps whenever she lays on her tube so I wake up and move her off of it and it beeps when it's empty (and sometimes it beeps for no reason). Because she is getting breast milk through the pump (and because cold milk separates and we need Claire to get ALL of the good fats mixed in), I have to pump regularly to refill it with fresh/warm milk (this also helps it to last longer so that I can fill it less often - but we still can only put so much in there at a time so that it doesn't go bad. This means that I wake up at least once to pump during the night, and we pump/fill it a couple of times during the day as well. So even though Claire is a pretty good sleeper (she wakes up a few times during the night but only to talk to me or tell me that she needs her pacifier put back in her mouth), her pump keeps us up quite a bit.  Plus, it's noisy!  Every 20ish seconds, it does its cycle to push more milk through the tube and it isn't quiet about it ;).

Levi is my very light sleeper so he is our nighttime buddy too as the pump wakes him up as well. This is both of them sleeping on my legs while I pumped this morning at 3am (sorry it's so dark but you get the idea). Of course, immediately after I finished pumping I spilt one of the bottles of breast milk all over the bed. That's what happens when it's dark and you can't move your legs and you're trying to refill her bag/pump while holding two full bottles. Thankfully I only spilt one so that bought us a couple of hours before we had to do it all over again! I wish I could say that was the first time I've done that, I will learn.... Someday!

To sum it up into a short answer... Yes, Claire is a good sleeper but no, we aren't getting good sleep ;).  All in its time though, I'm treasuring the extra cuddles and quiet moments.

We put her in these cute zipper blankets at night and when she's in the carseat so that she can't pull out her tube when we can't watch her. Since it's in her jejunum (intestine), it can only be replaced with X-ray so we have to go to the ER whenever it comes out so, although we are THRILLED that she is learning to grab onto things, play, pull, roll, etc. we have to literally be within arms reach of her all day long so that she doesn't get a hold of it. I try not to keep her in her blanket too much as it inhibits her motor development but nighttime and car rides are an exception since I can't watch her during those times.

Levi attends our appointments with us. This goes just how you imagine it would ... he's a three year old boy! BUT he loves his sister and is getting used to the routine. Initially I had thought that I would prefer not having to take him along but when we have appointments so often (and they take so long), it's just not sustainable over the long-term to find someone to watch him nearly every single day, plus I would miss him too much!

Here he is encouraging Claire (singing to her) during one of our little PT routines that we do at home (we do these 3-4 times per day):

But he IS a big brother, after all .... it took us a loooooong time to find where he hid Claire's pacifier:

She forgave him:

More rolling over - she started in the middle of the blanket on her back and ended up here:

And more practice lifting her head:

Here she is holding a rattle for the first time, she isn't too sure about it since she couldn't get it to fit into her mouth (which is very important these days) ;):

And here's my "homework," our new therapist loaned it to me. The information is truly fascinating, my biggest takeaway today that I will pass along is that individuals with Down syndrome have amazing flexibility (I get to see this truth in Claire every day!) but they *typically* lack the muscle strength and tone of their peers. I can't stop thinking about how our typical kids just one day reach their milestones, we don't even think about the steps or the process, it just "happens." Seeing all of the steps broken down and realizing just how hard Claire is truly having to work is amazing, I am so proud of her!  

Tomorrow we have an appointment with her surgeon to talk Hirschsprung's and G-tube and Friday we have both OT and speech (feeding) therapy.



Pictures like this keep me going. They remind me that no matter what worries or challenges we have, we have each other and that is the greatest gift!

Psalm 73:26

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

I'm willing to wager that having your child's heart fail is actually worse than your own heart failing but we cling to his promises and He has sustained us, strengthened us, humbled us, and shown Himself mighty.  Her heart is whole again and we have much to be thankful for <3!

Be blessed friends!