Monday, October 27, 2014

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! 

Wednesday, October 22, 2014

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!

Monday, October 20, 2014

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.

Sunday, October 19, 2014

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.


Saturday, October 18, 2014

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




Friday, October 17, 2014

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







Thursday, October 16, 2014

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.

Wednesday, October 15, 2014

OHS Recovery: Day 2

Claire is doing well!  We were able to extubate yesterday and she has done fine on nasal cannula oxygen. It is so wonderful to be able to hear her making sounds again, her cry is so weak that it breaks my heart every time she cries, it's barely audible but I'm sure she will get stronger over time. That first cry was the most beautiful, heartbreaking sound I think I've ever heard. She is still pretty sleepy but I was able to hold her for quite a long time yesterday!!! We were both so surprised at how fast that happened, we had expected to have to wait several days. Because she was extubated, we were able to take a ride down and get her NJ tube replaced so she's been getting a little breast milk. She still has her chest tube and pacing wires in but we hope to get those out today. She has a very weak cough so we are having trouble getting her to clear her throat and lungs but hopefully that improves as she gets stronger as well, for now we are doing chest PT to help with that and positioning her in certain ways to help her breathe. We were still not able to break her fever so they ran a UA and blood culture last night. The only other concern right now is the fever and that she hasn't been passing very much urine so hopefully the little changes that we made last night will help that pick up today.

She's speeding through recovery, our fiesty little girl <3.

 

Tuesday, October 14, 2014

OHS Recovery: Day 1

Claire had a busy night. She is still intubated for breathing, she hates and fights it so she has to wear little arm restraints and have extra sedation so that she doesn't pull it out. It breaks our hearts to see her trying to cry (she can't make the sounds because of the tube) and to not be able to comfort her with anything other than our voices and putting our hands on her head. Her heart rate dropped pretty low and became irregular overnight so we have been using an external pacemaker in both the atria and ventricles to help her with her heart rhythm. She also has a fever of 102*F.  Other than that, she's doing pretty well. There were a couple of times yesterday that her blood pressure got very high and no matter what they did, they couldn't get it down and we were so worried, seeing all of those people running in and having to stand back and just watch and trust God and the doctors is one of the hardest things. The other thing that she's really having a hard time with is clearing her lungs of "junk," she had another x-ray this morning and we are still trying to figure out how to get a good handle on that.

We are so so so thankful for all of the love, prayers, and support.  Please keep praying.

Monday, October 13, 2014

Open Heart Surgery Updates

We will update as we receive updates.  Thank you everyone for your continued prayer, love and support. 

"He's got [her whole heart] in His hands"

Our last few minutes together before surgery 
... her last picture without a scar on her chest
7:10am - she's in the operating room

8:09am - she's doing well, all of her lines went in smoothly and they began opening about 10 minutes ago
The view from our waiting room
9:45am - she is on the heart and lung bypass and the surgeon is working on the repairs

10:45am - the repairs are finished, she is off bypass, and her heart is beating on its own! They just have to close.

11:15am - we just talked to the surgeon, everything went well!!! The VSD was much larger than they had anticipated so they repaired that and were able to fully close the ASD. Because of how large the VSD was, he is confident that the pulmonary hypertension should be nearly fully corrected just with the repair (if the VSD had been smaller, we would have been looking for another cause to explain how high the pressures in her lung arteries were) so he did not need to leave the ASD partially open as a "pressure release valve." He said that her heart is very "generous" in size due to the shunting and compensation. They also repaired the PDA. They are finishing up and we should be able to see her sometime around noon!

3:10pm - we were able to see her shortly after noon. It took a couple of hours to get her calm and to find the right balance for all of the medications which was really hard to watch. It was so hard to see her in pain and fighting everything and to not be able to comfort her with anything other than our voices. She is having some trouble with her blood pressure but is doing pretty well otherwise.  She's a fighter! She'd be much more comfortable if she'd hold still, stop fighting everything, and rest but they say it's a really good sign (although it is breaking our hearts). Her cardiologist just left and he shared with us that she had a VERY big hole, he thinks we must not have been able to get a good angle on the ultrasounds because everyone was surprised at its size, it's a good thing we didn't keep waiting.



Tuesday, October 7, 2014

6 Days til Surgery

We have known about the hole in Claire's heart from the time that I was 33 weeks pregnant (I still vividly remember crying in the car and calling Justin from the parking lot) and from that moment on, open heart surgery has become something that "might happen in the distant future," to something that would "likely happen," and then a little less than two weeks ago we were told that it was no longer a possibility but a necessity.  Today, it became very real.  Today Justin, Claire and I spent the morning (a little over 3 hours) at her pre-op appointment.  We met with her surgeon (Justin for the first time), anesthesiologist, RN, had a lot of blood drawn so that they can get blood ready for her transfusion, and had an additional set of X-rays done of her heart and lungs.  The surgical team was amazing (and we were emotional! and full of questions).  I don't know how we are supposed to function the rest of this week but I know we will!!!  The Lord is our strength.

We met with the RN first and she went over everything we can expect before and after surgery and recovery, she also showed us what additional things we need to do to get Claire prepared for surgery - clean and cut her nails very short, things to watch for, etc.  In addition to what we've already started doing and all of the medications she is on, we have a nasal ointment that we have to do twice per day starting tomorrow to help kill bacteria and a special soap that we have to start bathing her with daily on Friday.  We are still doing irrigations and dilations as well to keep pressure off of her heart and lungs. We'll be up at 1am on the day of the surgery to stop formula through her feeding pump, then at 3am to stop breast milk, and then she will get sugar water through the pump until 5am. We check into our room in the PICU at 5:30am and she goes to surgery at 7am.

They expect her to be done with surgery sometime in the early afternoon if all goes as planned.  She will be put on full heart/lung bypass and receive a blood transfusion; because she is so small, her body doesn't have enough blood in it on its own to complete the "circuit" for the heart/lung machine. The surgeon will repair her VSD (hole between the ventricles) and ASD (hole between the atria) with patches and he will ligate the PDA (valve that didn't close).  Because she has pulmonary hypertension, he will not completely close her ASD during this surgery as it can act as a "pressure release valve," which would mean that if she were to have a respiratory event, it would allow her body to still receive some oxygenated blood.  Once her pulmonary hypertension is gone and her lungs have recovered, we will go back to the hospital for likely just a one-night stay to have it fully repaired.  Both the surgeon and anesthesiologist went over the risks of the surgery in great detail - they both agree that she is at less risk because of the actual surgery then she is because of the state of her lungs - so her specific risks during the surgery are higher (more than double) what they would be if she was just having open heart surgery without the breathing issues.  If anything were to go "wrong" that is what they feel it would be (a respiratory episode & loss of oxygen to vital organs) and they are taking all of the precautions they can to treat it now, during surgery, and during recovery - they also feel that her recovery will be longer than what is typical because of this. I'm sharing all of this so that you can know what to prayer for - decreased pressure in the pulmonary arteries so that she can get oxygen to her whole body!

They expect her to be in the PICU for about a week and then get moved down to the floor we were on two weeks ago for another few days before going home - this is just an estimate and could be shorter or longer depending on how she recovers.  Most of her recovery will be finished in the first 1-2 weeks but it will take her sternum (breast bone), which will be held back together with permanent wires, about 6 weeks to heal so we will be taking precautions with how we hold her for about that long.

There was a LOT more information but that's all of the major & important things ;).

Oh and she FINALLY gained weight yesterday, until then we've been trying lots of different things.  She is still on the continuous day/night feeding pump and we finally found a "calorie cocktail" that works - I'm not a fan of it at all (and it makes her stink :( ) but it's working and we only have 6 days left so we're pressing on.

If you see us in the next week please have patience, our heads are elsewhere and we aren't functioning like we usually do....  Thank you for your continued prayers, we appreciate you all so so so very much!  "He's got [her whole heart] in His hands" <3.

Claire's first Buddy Walk on Saturday
Claire's Buddies!
The Girls <3!