When Do We Sleep Again?

My, oh my, has it been a while since our last update! You all probably (accurately) predicted it would be so. First time parents taking home their medically fragile baby: cue the almost predictable flurry of days that blur together in a haze of exhaustion, sleep deprivation, anxiety, visits to the hospital, calls to the hospital and all the regular new baby feelings of insecurity and being overwhelmed.

We’ve had some fun times over the last few weeks starting with Hope getting to meet her very special cousin, Charlotte. We missed the Martin’s so very much!! It was heart-warming to have in-person hugs from Julie, Ephraim & Charlotte. And, of course, to play Killer Bunnies with Char. She also got to play a new game – Yeti in my Spaghetti, which turned into an interesting beard adornment moment. I can’t wait for Hope to join Charlotte and John in their fun adventures.

Earlier that week, on Valentine’s Day, the Cincy Channel 9 news came out to our clinic visit to do a special follow up on Hope’s story. Her clinic visits are always rough. We often end up halfway through with Hope screaming because she’s just done. We had hoped she would make it through this one differently, but she was consistent and screamed her head off during the whole interview. I have no idea how they got something usable, but below is a link to the story they ran.

Channel 9 Valentine’s Day Story

Lamar Advertising has been running a CHD awareness campaign by putting pictures of heart warriors up on select billboards around the city, but you have to submit their info to be featured. We finally got ourselves together and sent Hope’s picture to them so she could be one of the many Heart Hero’s featured on these billboards around the Cincinnati area.

Hope has sent us back to the Emergency Department at CCHMC twice since February with g-tube complications. The first time she went ahead and pulled it out and the second Daddy accidentally did it. Down the road, this won’t be quite as concerning, but we are still in the initial healing phase after the first surgery to place it, so pulling it widens the stoma (the opening made for the tube from her skin to her stomach) and increases complication chances down the road. Every time it’s pulled out it also resets the 6-week clock on when we can switch to the low-profile version called a Mic-Key button. This type lays semi-flat against her tummy versus the PEG version she has now that dangles down in the perfect spot next to her little hand to grab. We’ve threatened to put a cone of shame under her arms like a dress to keep her away from it. We would have been switching right now had she never pulled it out, but instead we look forward to mid-April.

With the passing of February 14th came a huge milestone – 90 days post-transplant with no signs of rejection! Every 90 day point for the first year is a significant milestone where the rejection risk starts to decrease more and more rapidly. We also get to start weaning her off some drugs!!! Or so they tell us – we haven’t actually started yet. Hope needs around 13 drugs every day for a total of about 25 individual oral syringe or subQ injections every.single.day. The pressure to get this right feels like a ton of bricks. We remember being told that one of the largest contributing factors to failed transplants is failure to comply with the medication routine. We’ve gotten to a pretty good system through trial and error and we are pretty rigid about her anti-rejection meds. And when the inevitable happens, we try not to beat ourselves up when we get off schedule. We try to never miss a dose, but it’s happened a handful of times and the biggest contributing factor is simple dual-parent exhaustion. Over the next year or so we should be able to drop six meds from that list and cut the number of doses in half – from five down to only two. All of this depends on Hope, of course. If she struggles with seizures (from her strokes) or atrial-tachycardia she may have a longer journey to come off those meds. We all know it’s her timeline so she’ll let us know if and when she doesn’t need them anymore.

One other benefit of passing the 90-day mark: we get to extend our 9-mile leash to 4 hours of CCHMC. We didn’t realize that merely passing the milestone alone wasn’t going to be enough to travel freely; the team is a wee bit possessive of her and also wanted to give us the final ok at her clinic visit that week. I swear it’s like we have shared custody of this child with them. So right up until the last minute we weren’t sure if we’d have medical authorization to travel with her, but we got it! We rushed around and tried to pack everything she’d need, filing Johns SUV in the process to.the.brim. We got down to the lake and realized we forget bags to feed her with!!! Thank God for John’s cousin, Jill, who completely saved the day and reached out to a g-tube mom she knew that had a saved stash of extra supplies that she gives away when she finds a family in need – and we were definitely in need that weekend. Since it was the weekend all the medical supply stores were closed and the Louisville children’s hospital was out of stock on the model we needed.

You may have noticed Hope is chunking right up – or at least her cheeks sure are! It seems like whatever we are feeding her is going straight to her face! Feeding her is So.Much.Better with the G-tube – no regrets on taking that last minute surgery slot. She still pukes – mostly directly onto my face and chest – John seems to know just the right moment to hand her over and then she blows!

She also got to be introduced to baby food for the first time!!! I know all the crazy rules people go by on what they feed their babies, but when you have a baby with a serious oral aversion the rules go right out the window and what you feed her is any.damn.thing.she’ll.eat! The speech therapist advised us not to waste time with things that are harder from a profile perspective and go straight to fruits because they may entice her to use/strengthen her oral skills more so than the savory types. So far she freaking loves peaches! We got her first tastes on camera and while she was a little confused at first, the big grin let us know she was down to eat. The speech therapist still says we should expect a few years of speech therapy before she’s on par for her age. We are trying not to get discouraged by the length of the journey and just focus on the milestone – SHE’S EATING!!!

Daddy & Hope participated in the PHCA-OH fundraiser for CHD awareness ‘Conquer the Runway’. The PCHA leaders put the idea of participating in our head during their CICU Christmas gift event (when we were still inpatient) – they brought gifts for the inpatient families to make sure all the inpatient families had a gift. While they made sure we left with a physical gift for Hope, they didn’t realize they had also given us a mental gift too – a target to try to reach. John and I both said that we just wanted to be home by date of the runway show and that if we were, in fact, home, then we would participate as a way to celebrate all of Hope’s big and little victories. When Hope went to get her G-tube placed a week before the runway show we thought for sure participating was put in jeopardy, but the week of the event came along and we realized we were actually going to get to participate! We rushed around to find a suit for John to wear. The Spotted Goose had donated an outfit, but Hope really didn’t want clothes on so she opted for just the pearls and big fluffy bloomers the day of and it couldn’t have been cuter. I put a few pics below and I’m putting together a separate post with a gallery because there are too many to post here! To everyone that came from near and far – Nonni, Mary, Cindy, Katie, Diane, Natalie, & Kim – THANK YOU!

While the event was fun, it also solicited a feeling of fear I hadn’t anticipated. The venue was small and closed in. We were right near the main walkway where people were steaming by and there wasn’t a seat in the house to even sit down and…Everyone wanted to touch her! Oy vey! We did our best to shield her from anyone’s touch in an effort to try to keep her healthy, but it was a struggle. It’s totally opposite to my nature. Who would have thought I’d be missing the hospital?!? and the convenience of hand sanitizer every three feet and a sink in arms reach to ensure that hands were freshly washed!! To anyone that came to support Hope that day, please don’t take offense if I seemed to hold her close and be a little jittery. This was our first public outing with her. I hadn’t done the math beforehand and was caught off guard emotionally by this need to protect her.

There are so many people that we want Hope to meet – so many people who have been rocks to us in this journey – we want to share her smile and her spirit with you! If you are wondering if we want to see you the answer is probably yes, but the weight of new parenting plus work/school hasn’t left us much time during the day to proactively make many social arrangements. If you do want to visit, please let us know. Before you do, just make sure to check these boxes :

1. Am I healthy?
2. Have I been around anyone who is ill or seemed ill over the last 7-10 days?
3. If you have kids, are they healthy (and have they been symptom free for 7-10 days)?

If the answer is yes, reach out! If the answer is no, we love you so much and it pains us to wait to see you, but we probably need to wait until all the answers are yes. We are trying to space visitors out so that we only have one or two during any given week and we like to keep visits to small groups rather than large ones. In the event that we make plans and then you or someone close to you becomes sick – please cancel! We’ll be disappointed, but believe me, we’d rather wait than risk Hope getting sick and needing to go back to the hospital again. Hope is immunocompromised. This means that she will get sick easier than normal kids will. She just doesn’t have the same front line defenses your kids have to fight something off. Also, be warned: John is the hand washing inspector and he may be a little intense. He made his own Mom sing the rosary out loud one time while she washed so HE knew she washed long enough to kill the germs. It’s intense and I love him for it – it’s all from a place of wanting to keep Hope safe.

The last point I want to share with you guys is a little CHD & transplant education/awareness. I have had several conversations recently with people who have never known anyone with a transplant of any kind (like many of us) and assumed that once she received the transplant she was “fixed” and you only had to make it through the “woods” with rejection and then she was cured and “normal“. All of this is a totally logical thought process if you aren’t familiar with what comes along with transplantation. Unfortunately, this isn’t how it works. There is no cure for the congenital heart defect Hope was born with. Receiving a heart transplant was Hope’s only chance to extend her life – without it she would have died a victim of CHD. Receiving this gift was a bit more like a swap than a cure, though. She doesn’t have as many concerns from a heart perspective anymore – she’ll be able to run, play sports, ride roller coasters and generally do anything she wants – as long as she douses herself in sanitizer to stay healthy before and after ;). Seriously, we traded our heart problems for immune problems. Hope will be immune-suppressed for the rest of her life because of the anti-rejection meds that are necessary to keep her body from attacking her new heart. This means she’ll get sick easier than other kids and when she does get sick she has no defense so they will hit her much more severely. You might nurse your baby back to health from a cold or flu on the sofa with chicken soup and cartoons, while a common cold or flu can send Hope back to the cardiac floor of the hospital. So John and I are charged with being the goal-line defense against anything that might get her sick – germs on hands, sneezes, coughs, raw/unpasteurized foods like eggs, unwashed fruit etc. If we ever seem like we are paranoid it’s because WE ARE. We will need support and understanding from our friends and family as we make choices that we feel are in her best interest. We also have to live with the knowledge that fighting rejection is futile. Hope will have rejection at some point – our bodies are smart and we can only trick them so long. So either rejection or a transplant disease of the arteries will mean that Hope will probably need a second transplant in the future (~15-25 years down the road). Who knows what medicine will look like that far down the road, though? We are taking one day at a time. We tell ourselves that it’s just our job to keep her healthy and alive until she needs that next transplant and pray that advances in Stem Cell research and rejection therapy continue to advance giving transplant recipients longer and longer life expectancies. Taking one day at a time is hard – it’s hard to push the thought out of my head that it’s more likely that Hope has an abbreviated life expectancy – try knowing that and not just bursting into tears every time you look at your baby. The struggle is real. We have amazing friends and family that have understood this and been so supportive – we really can’t thank you enough. I shared this perspective with you today to ask for continued patience with John and I when we have our bad days – days when we are wrestling with this reality. While we are elated to have each day with her, there is something bittersweet always lingering in the backs of our minds. And the only cure is that sweet smile of hers – it takes everything away and we are lost in the pure joy of Hope.