Amazing!

Can you believe this girl had open heart surgery just TWO weeks ago?  Her recovery has been nothing short of miraculous and she was already (as of Friday) able to come off of all of her heart medications - that's right, she is taking ZERO heart medications and her pulmonary hypertension is gone!!  

She is still an itty bitty thing (that's a newborn diaper!) but she's got nothing in her way now and we expect her to start catching up very soon!

So ... here's a picture to celebrate her health and the day she was given her life back!  Until two weeks ago, she struggled just to breathe and couldn't even suck on her pacifier without being drenched in sweat from how hard her body had to work.  We've got a "brand new" baby on our hands and it's truly ... amazing <3!!

We have a long day tomorrow: weight check, dietician, and 2-hour neurodevelopmental evaluation, 4mo well child on Wednesday and OT on Friday.  Next week is a big/busy week; we see the eye doctor, speech therapist (for feeding), dietician, surgeon, and OT. Updates to come! 

Four Months

One year ago today we found out that we were expecting and today, Claire is 4 months old! I am always amazed when I think about what a miracle life is. Truly incredible!

Claire - 4 months

9lb 12oz (0.18%), 22 1/2in (1.61%)

She has discovered her hands and lifts her feet up to her hands while laying on her side, she LOVES her wubbanub (giraffe pacifier) and can only survive a couple of minutes without it, she says "ahh" and "ohh," she loves attention and smiles when talked to, and she tries to sing along whenever she hears music.

[[I tried to get a picture of her without her hands covering her face and finally gave up, that's just what she loves right now ... her hands and her mouth ;)]]

Getting closer to being able to lift her head!

Feeding and Weight Gain

Now that Claire's heart is fixed (YAY!!!!!), our next goal is to come up with a more long-term plan for feeding and weight gain so that was what our appointment was about today.  Our current solution (continues NJ feeds with a pump) can only be temporary as it isn't the best scenario for her to learn to swallow and eat on her own - and none of us like it!  She hates it and often tries to pull it out and, if it comes out, we have to have it replaced at the emergency room (this has already happened twice and we've had countless close calls).  Because of this, we've had to keep a very close eye on her for the last month.

Her weight has fluctuated a bit over the last month but, overall, it is back to exactly where it was 3-4 weeks ago.  This is not concerning though due to what she just went through.

Developmentally, it is difficult for Claire to learn to swallow and eat well while having a tube in her throat.  The plan we made today is that over the next 3 weeks, Claire will have weekly weight checks at the GI clinic (first one was today) so that we can begin to see where she is at with her weight gain now that her heart is fixed.  She will also be evaluated by a speech [feeding] therapist in about 2 weeks so that we can make a good decision about whether or not we want to go ahead with having a G-tube placed. It sounds like the only way we would not move forward with this is if they feel like she has made really great progress with her swallowing since leaving the NJ tube in much longer wouldn't be ideal for her development (or our sanity ;) ). Having the G-tube in place would allow her to learn how to swallow safely (without the challenge of having the tube in her throat) while still supplementing her nutrition through the tube so that we could focus on helping her learn to swallow safely and at her own pace instead of also stressing about her getting adequate volume and calories at the same time.  The surgery would mean another 2-ish night stay in the hospital but could really help her make some great progress with her oral-motor development (and our favorite general surgeon and anesthesiologist have already said that they would be the ones to do it which helps us feel more comfortable).  There is a high possibility that if we move forward with the surgery, she would also perform a Nissen fundoplication which means that she would wrap part of Claire's stomach around the bottom of her esophagus so that she would no longer struggle with reflux (and aspiration of reflux) and we could feed her directly into her stomach instead of having to continue to put it into her intestine.

Coming up over the next week she also has her 4 month developmental evaluation, 4 month check-up, weekly OT, and another eye appointment.  I will update again next week unless something big happens before then.

As always, thank you for being a part of Claire's Army <3.

At Mary Bridge GI to figure out
a plan for feeding and gaining weight.

Almost 4 months old and this is how 0-3 month pants fit ...
we will be celebrating when they do fit!  Grow baby, grow!

She really missed her swing while we were
in the hospital.

HOME!

We are HOME!  Once again, Claire surprised everyone and came home just 6 days post-surgery.  Everyone was celebrating with us as we were leaving and all of her specialists shared with us that they couldn't believe her progress.  She is truly remarkable <3.

Saying goodbye to Dr. Nuri,
the man who fixed our baby's heart!

Taking her home!

All loaded up to go home!

Talking to herself in the mirror on the way home <3.

A gift from the hospital.
Each bead represents a part of her medical journey
so far - surgeries, biopsies, transfusion, etc. 

Reunited and coloring with the big kids <3!!!

Since her VSD was so much bigger than they had anticipated, we are all expecting her to just soar now with how much more energy she will have and how much easier everything will come for her.  The VSD was 8mm (very big taking into consideration the very small size of her heart) and the surgeon shared with us that they always expect there to be some surrounding tissue that partially covers the hole to allow less blood to pass through but that she didn't have any extra tissue so hers was literally a BIG open hole.  We are so thankful that it is fixed now and that she can truly start to grow and enjoy this amazing life!

We will be keeping her isolated - no public places, etc. for one more week (2 weeks total) and then "cocooning" her for 4 more weeks and then she should be fully recovered and ready to spend time with all of you!

THANK YOU everyone for covering us in prayer, we have felt such an overwhelming amount of love and support for our little girl and that has touched a place deep in our hearts.

OHS Recovery: Day 5

Claire is doing great, there isn't much new to report.  Most everything that she's going through now is considered normal post surgery!

She is still losing weight so we are, again, playing around with her "calorie cocktail." She is having more trouble with swallowing than before surgery - this could be due to some swelling in the vocal cords because of the insertion and removal of the breathing tube or some more serious damage to the laryngeal (vocal cord) nerve is a possible complication from her surgery as it runs very close to the heart. A speech therapist came by yesterday and is concerned that she isn't even handling her saliva well (in terms of swallowing and aspiration). We are limiting her pacifier time and only allowing it when she's on her side and with a good head position for swallowing and I'm supposed to try to not let her get upset as she's not able to safely manage the extra swallowing that is required during and after crying. Hopefully it's just swelling and this will improve in a very short time.

We even got to take her off the monitors for 30 minutes yesterday to take a trip to the playroom with Big Brother <3!

Playing with brother in the playroom



 

Claire's nurse, Jenny

OHS Recovery: Day 4

Her fever finally broke and all of her tests came back with no sign of infection. Her general surgeon increased her irrigations again to 2x/day due to an ileus (blockage) and that seems to have helped a lot as well. She started having trouble again with her heart rhythm and it being too slow but we are just keeping an eye on it for now as her heart itself is still healing from surgery, hopefully it corrects itself in a couple of days. We had one very scary episode last night where she wasn't able to breathe on and off for about 5 minutes [but it felt like 60!] - most likely she had some secretions blocking her airway that she couldn't clear but eventually we got her calm and she's much better now! I'm so thankful that it happened here where we had lots of help and people trying to get her breathing again and not at home. They already told us that it earned us another night or two here so that they can continue to keep an eye on her though. She also lost some weight but we aren't worrying about that yet either since her body is still trying to recover.

"And surely I am with you always, to the very end of the age" -Matthew 28:20

OHS Recovery: Day 3

Claire had a little bit of a rough morning, she got her chest tube and pacemaker wires (and accompanying stitches) removed.

But the day only got better from there...... We made it out of the PICU!

 

We are now on the floor we were on a couple of weeks ago and Claire is doing very well. She was able to come off of her oxygen last night and had her central line (and more accompanying stitches) removed as well. She's even on regular breast milk (through a continuous NJ feeding pump), we will wait a couple of days to make sure that she is tolerating that well and gaining weight again. She had an X-ray last night as she hasn't been pooping and we are still waiting for some test results - blood, urine, and stool. We are all shocked at how quickly she is recovering, she truly is a strong and feisty one. This has all been at her pace and she is flying through it! What a whirlwind of a week; to go from the very real fear that something could happen to her to having her "almost back" in just days has been nothing short of an emotional -crazy, terrifying, and amazing- roller coaster.

We are truly amazed at the number of people who have been following our journey and keeping Claire in your prayers, THANK YOU! It touches our hearts so deeply to know that she is surrounded by so much love, it really does <3.