Home Again!

We are so thrilled to be back home and all together once again! Audrey was released from the hospital on Memorial Day last week, and we have slowly been settling in since then. She still isn't 100% herself yet, (lots of crankiness, fighting sleep, waking up to feed during the night, etc.), but shes's making progress each day for sure. We know she's probably still hurting from the trauma of open heart surgery, so we just try to keep her pain controlled the best we can and be understanding when she's not acting like she used to prior to this surgery. I know it must be frustrating for her to be back in her normal setting, but not be feeling good or be able to put weight on her arms.  (We're under yet another 6 week period of sternal precautions in which she can't be lifted under her arms and she can't really do anything on her tummy so as to keep pressure off of her arms and chest.)

We hit a few speed bumps at the hospital that we had to deal with before she could come home. She ended up needing two chest tubes put in, one on each side, to drain fluid that was collecting outside of her lungs. Luckily, those drains worked well and only prolonged her stay by a few days. While one of the chest tube drains was in, it became apparent that the fats from my breast milk weren't being properly absorbed by her lymphatic system, which happens from time to time after cardiothoracic surgery due to them cutting through the lymph nodes, etc. As a result, we had to wait for that issue to clear a bit and she was placed on a special formula that has special fats that don't need to go through her lymphatic system. She'll have to stay on that formula for 6 weeks while her system heals, but luckily can continue her fat free fruit and vegetable diet as well! 

Overall her surgery was successful, but we will have to watch the patch on her LPA to make sure she doesn't outgrow it since it already had to be replaced since her first surgery- just seven short months ago. Should that patch need attention, it would hopefully just need to be ballooned out via cardiac catheterization. We will also need to keep an eye on her aortic valve that was slightly damaged in surgery, but hopefully it won't cause noticeable issues and may not ever need to be repaired. Obviously her doctors will be keeping a close eye on all of her heart issues, but those two mentioned above are relatively new to us. 

We had her follow up appointment with her cardiologist yesterday and her echo cardiogram and chest x-ray looked great, but the part that was music to our ears was when her doctor said that more surgeries or procedures shouldn't be in her near future!! What a huge relief! This time around was definitely much, much harder because she was so aware of what was going on and it broke our hearts each time someone in scrubs walked into her room and she immediately burst into tears. Every. Single. Time. Plus she just seems to be in more pain this time, bless her little heart. 

The best part of all is that we will be slowly introducing her into society over the next few weeks, haha :) She already had a mini visit with her brand new cousin Harrison, and will be going to her first family celebration with her cousin Grace tonight!! Soon, public venues will even be visited! I know this sounds crazy because for most people taking their babies out is completely routine, but it is so exciting for us to finally take her out and to meet all of her loving supporters. Keeping her cooped up the last 7 1/2 months has been so hard for our families and us, but all I have to say is that it was well worth it! She would have been in trouble had she caught a respiratory infection, but we are so happy that our efforts prevented her from getting sick at all! Now her body can handle illness much better so we know it's just a matter of time before that first sniffle or cough, but we're much more ready now. She has so many new friends to meet; she has no idea what she's in for and I can't wait!

Thanks again to everyone for checking in on us, bringing meals, sending care packages, sending sweet cards, etc. The hospital stay was really difficult since Charlie and I were alternating shifts with Audrey, so all of your kindness really helped lift our spirits in what was sometimes a lonely and scary time and still continues to do so today. All of the prayers said for Audrey were answered and we couldn't be more thankful for each and every prayer. The love for our little girl is still overwhelming and we can't wait to tell her about it one day. 

Love to all,

Christie, Charlie & Audrey



Here are some pictures from the last couple of months, prior to surgery:

Wild flower pictures at the farm :)

Little chunk loves her bouncer!

Some of her pictures at 7 months

Poor baby has no idea what's about to happen as we wait in the cardiac surgical holding room

Post surgery:

Day 2 in the PICU with her precious name sign from her cousin Grace!

Swollen from all those fluids

Day 3 of recovery

Finally, on day 4, the we got the first smile! We didn't get another one until the next day.

Finally getting more comfortable

Snuggles with Grandma :)

She was so bored with the hospital that the only thing that made her stop crying was a trip around the hospital floor in her first wagon ride! She loved the fish tank too!

When she met Harrison, the first thing she did was reach out to touch his head. Melted our hearts!!

BFFs... and they don't even know it yet!

She LOVES those balls!

Playing dress up!

Day 3 Recovery Update

I'll start with a quick recap of her first 48 hours. The first night, as expected, was very hard.  She was obviously in a lot of pain, so they had to find the right amount a of sedation and pain relief. They were able to up both her sedation and pain meds to keep her somewhat comfortable, but it was overall a really rough and sleepless night for her.  

Yesterday they took her off the sedation medicine so she he started waking up on purpose, but was usually very angry and crying when she did. It is just so tough when she stares at you with her red, tear soaked eyes with a very confused emotion on her face like she's asking why we did this to her or to please help her! Her bowels were still deep asleep at this point so she wasn't allowed anything besides some pedialyte and apple juice. She was also working on coughing to clear her lungs after being extubated. The best part about yesterday besides making huge progress was that I was able to hold her for a really long time. What a huge relief that was to have my baby once again in my arms. 

This morning has been really rough for her. She was really struggling hard to breathe all night so her doctors, after seeing this mornings x-ray, decided to perform a procedure to insert another drain that would help the fluid that is caught outside of her lungs to escape so that she could breathe better. Now her respiratory rate is much lower and she's not working so hard each breath. We've started trying to feed her breast milk, but she just swats it away right now. I know she'll eat when she's ready. She has been alert while not fussing at times today, which feels so good. She especially likes when Charlie or I hold her. Still no smiles, but I'll take spurts of no crying at this point. Overall she IS doing great, but today was really tough for me for some reason. I suppose all of her pain is really getting to me now. I thought she would be steadily comfortable by now, but she's so aware of her awful situation that it makes it even worse this time around. The nurses and doctors are mainly watching her respiratory functions and feedings, and as if right now she's doing ok. This new drain will probably add a few days to her stay in the ICU, but it was something we were told upfront might happen. Each day seems to be so much better than the day before as she starts to look and act a teeny tiny bit more like our feisty little girl. We absolutely can't wait for that first smile. Hopefully we'll get it tomorrow?! And hopefully we'll be able to start shedding some lines soon, rather than adding them. It's a tangled mess and it'll be so much easier to hold her without some of them!

On a totally different note, Audrey gained a cousin today! Precious Harrison Thomas Spencer was born to our sweet sister and brother in law just this morning. We can't wait for a play date with him!! Congrats Carrie & Erik!!

XOXO,

Christie & Charlie

Full Repair Recap

We are so happy to share that Audrey did very well in surgery today! They started about 7:30 and had her in the PICU around noon, just as expected! She looked wonderful as they wheeled her down the hall on the way to the PICU, and her anesthesiologist even told us to give her a kiss while he briefly removed her oxygen mask- what a sweet gesture! The first 24-48 hours will be her toughest, but so far, so good. The swelling is starting to set in this evening, but it was so nice seeng her look like she was just napping immediately after surgery. She even came out with her little curly-q on the top of her head perfectly intact! 

Her color has definitely changed- now she has rosy pink lips and toes;

no longer a splotchy purple! What a relief it is to have this huge procedure behind us. We will focus on her recovery and keeping her comfortable now. We'll try to update soon when I can actually type without misspelling every other word; sleep deprivation is starting to take over ;)

The power of prayer is just amazing and I'm confident they have all been answered thus far! Love to all!!

Round 2; surgery tomorrow morning

Sorry for the false alarm earlier this week! Having the surgery cancelled was a huge blow after mentally preparing ourselves for it, but all I can say is that at least Audrey wasn't aware of all the drama. We were lucky enough to get a surgery date for the same week her original date was set though. Audrey is now scheduled for surgery tomorrow morning, bright and early, same drill as Monday. (Except that this time we hope to actually get her in the OR :) )

We are sitting here at the hospital waiting to get called back for her pre-op labs (yet again), poor baby. But after this, we are ready to go. Bags are still packed and schedules have been re-arranged!

We will do our best to give updates tomorrow morning and throughout her recovery. Once again, prayers for our sweet girl and her amazingly talented medical team are much needed and appreciated. 

Xoxo,

Christie & Charlie

A few pictures of us wasting time this week while we waited for Friday to come around :)

Surgery cancelled

We are extremely unhappy to report that Audrey's surgery was cancelled this morning due to oversight by one of her doctors. Necessary testing was not ordered in time and we got all the way to the surgical holding room with her surgeon before we found out. We will have to see when her surgeon can fit her into his schedule.  We hope to get a date for next week as her blood oxygen sat levels are declining and she is becoming more noticeably fussy and lethargic. Hopefully we will have a new surgery date by this afternoon. 

Thank you so much for all of the prayers thus far.

Tomorrow is the Big Day

Happy Mother's day! Tomorrow is the big day on which Audrey's full repair open heart surgery will be performed. Despite the dread of tomorrow, we have managed to have a great day with grandparents stopping by throughout the day for playtime with our little love. It may be a while before she's up to playing again, so I'm glad we got some quality time in today.

I just wanted to create this post to request prayers for our sweet Audrey and her amazingly talented medical team, as they take on the task of fixing her heart tomorrow morning. (That's what I have to keep telling myself when I think about the pain she'll endure and how she will be unrecognizable tomorrow in the ICU; "In less than 24 hours, our baby's heart will be 'fixed'." Finally.) May God steadily guide the surgeon's hands so that the procedure is as routine as possible and a complete success. May He allow the anesthesiologist and cardiac perfusionist to properly administer to Audrey the sedation and oxygen circulation she requires. May He watch over the rest of her medical team as well, helping them to provide the best services possible to keep her healthy. May He allow Audrey's recovery to be as quick and painless as possible.

We will take her in tomorrow morning at 5:30, and they should take her back for surgery around 7:30. The surgery is expected to last around 4 hours, so hopefully around noon we will get to see her.

This surgery has been a long time coming, but it is still a very scary time for our whole family. We are so fortunate to have the support of so many family members locally, who will be waiting with us every second in the hospital tomorrow. Together, we will stay strong for our Audrey.

We will be sure to give at least a brief update once our little babe is out of surgery tomorrow.

Much love,
Christie and Charlie

Second Surgery Scheduled

As promised, we wanted to let everyone know that the date for Audrey's full repair open heart surgery has been scheduled for Monday, May 12th. Just typing that makes my stomach turn, especially because that's less than two weeks away. We will have our pre-op appointment with her surgeon next Thursday, and then we'll have to take her in for blood work/labs either next Friday or Saturday. It doesn't sound like we'll have to admit her to the hospital the night before surgery, so it's nice that we can take her in Monday morning (albeit very early, I'm sure).

We expect to have her in the hospital for at least 7-10 days, but of course that will all depend on her recovery. She's a strong little pumpkin and has shown us that she can get through tough times, but we'll stay cautiously optimistic that we can have her home within two weeks from her surgery date. (I feel like even two weeks is crazy fast after having open heart surgery, but I guess little ones are very resilient and I'll just be happy to have her home as soon as possible!)

Once she's out of the PICU, she'll be in a normal pediatric room (but with lots of cardiac special care), so it is comforting that one of us can stay with her over night in the little pull out "beds" they have. Now that she's much older compared to when she had her first surgery, we are wondering how her recovery is going to go. She's extremely active and happy right now, so we imagine it's going to be heart breaking to watch her struggle and not be herself. We have no idea what to expect as far as what she will and won't be able to do physically within the days/weeks after surgery. Her cardiologist explained that she will probably try to overexert herself, which we'll have to watch out for. She likened it to when adults go running for the first time in a long time; sure you feel great during and after the run, but not so much the next day. Audrey won't know her limits, so we have to help her find them. Right now she almost always likes to be entertained with toys by holding or chewing on them, so I worry that she might be bored and frustrated just sitting in the hospital for all that time. We'll do our best to let her play with us and toys as she's able though.

We're going to put together a schedule of caregivers during her stay so that at least one family member is there with her at all times, so that is comforting. It was so incredibly hard leaving her in the NICU for the night when she was a newborn (you couldn't sleep there over night or bring in food), so I can imagine Charlie and I won't actually be leaving her side often anyway. Luckily, food is allowed in the PICU/ pediatric rooms :)

I know we'll get through this, but it's going to be a rough few weeks at least. I'm hoping we'll have a few days before her surgery to spend some extra snuggle time with her, get the house ready for her return, pack our hospital bags with extra clothes & supplies, and prep some freezer meals for once we're out of the hospital. I'll be happy if we just get to spend lots of time with her though! She is just so much fun with all of her squealing, laughing and bouncing around that she does now!

We still very much appreciate everyone's support and concern for Audrey. I can't properly express how much a call, text, or card 'just checking in' means to us and how it lifts our spirits. I'm also still amazed each time I hear that someone who we haven't even met is asking about how our little girl is doing or that they have been praying for her. The love she has received since before her birth is absolutely astounding and heartwarming!! We are extremely privileged to call ourselves the parents of this very adored baby girl. Please continue to keep her and her medical team in your prayers as we continue this journey to a mended little heart. <3 We will try to provide updates on this site as noteworthy events occur.

Audrey's First Easter!