I am so sorry I haven't blogged in a LONG time. Two months! To think, some days I was posting something every two hours. But here we are two months later and TONS to fill you in on. I'll start with the medical stuff then move on to what we've done these past two months.
First, in the last blog we talked about a heart cath that was coming up. This procedure is the one where they go through an artery in Ella's leg with a scope and check on the pressures in her heart, lungs, and any other things they want to see. This cath was supposed to be done on April 15th, but Ella had other plans and got sick about a week prior which meant she couldn't have the cath done. She'd have to wait another 6 weeks. I was SUPER bummed about this because I am yearning for answers with this little one, but I am also kind of thankful because it means that we have more time together before she goes back into the hospital for an anticipated longer stay. The cath is now postponed until the 10th of June, when I am done with work for the summer. This will also be good timing because the PICU didn't allow kids under 12 in the unit until May because of the risk of more illness being spread, so Eli wouldn't have been able to come to the hospital to visit at all. So there we are! Silver lining!
Dr. Hill will be performing the cath and said there is a 70ish-% of her being able/needing the next surgery, the Fontan, shortly after the cath. They will be checking out the collaterals that her body formed because of the loss of the arteries in her neck due to clots, the pressures in her heart and lungs, and the size of her IVC. The IVC needs to be at least 15mm in diameter (I think) to be able to do the surgery successfully. To be completely honest, I have no idea what they do with the IVC in the Fontan but I know it's one of the key components. Having this surgery would mean that Ella would have normal oxygen saturations and would be out of the scary interstage.
Ella has continued to keep getting little colds here and there which have dramatically slowed her ventilator sprints. We didn't sprint her at all during the months of February, March, and April. It seemed like every time we felt like she was well enough to start them again she would get sick. So we are still on the vent 24/7. We are going to start sprinting her on CPAP again starting tomorrow. Our goal is to get her on that setting completely by the 10th of June... Not sure we will get there, but I think we will get close.
Ella continues to vomit 3-4 times a day. It's not like a little spit up, it's a violent gag and projectile barf... It's so sad. I hate it when it happens. When she starts gagging Matt and I often yell out, "Save the ties!" which means that we need to hold a washcloth in a way where the vomit doesn't get on her trach ties. Eli has picked this up and yells it out when he notices that she is gagging too, haha! The skin around her neck has been so irritated and red. It seems really painful. We feel like we've tried everything in the book to help rid her of the irritation, but nothing seemed to have worked until we tried a different kind of tie that she had in the past. We hadn't used these because her trach looked like it hung out a little more with these, but I think now that she's bigger it doesn't do it as much. It seems to be helping! It's only been a little over a day so we will see if it truly is helping, but I am hopeful!
Back on the 16th of April we had an appointment at the Pediatric Day Unit (PDU) where we pulled 50mL of blood from Ella and replaced it with IV fluids. When we were in the hospital back in February we noticed that her labs showed a really high hemoglobin level. Her level was at about 21 and a normal person would have a level of 13-15. This is due to the low oxygen levels and her body compensating by creating more red blood cells to carry oxygen to her body. This seems to have helped with the redness, and possibly the puffiness, in her face. We got labs done shortly after the blood was pulled and her levels were down to around 18. We now have Ella on about 3L of oxygen at all times now to keep her hemoglobin levels lower and her oxygen saturations up. Unfortunately it's another thing she's hooked up to at any given time, but we figure it'll be for a short time period and hopefully it'll work the way we want it to.
We have not had a nurse on Mondays and Tuesdays since the middle of March so I have been home with Eli and Ella. It has been stressful, but also kind of sweet. We rarely get time where we don't have someone else in our home and these days have forced me to stay home and enjoy my kids. It's definitely not an easy task remembering to do all of Ella's medical and developmental needs as well as take care of Eli and his needs. I've had my fair share of break downs, but I am starting to like having those days with them.
ELLA TURNED ONE ON APRIL 5TH!!!
Some people weren't sure she would make it to one and look at her now! It's pretty amazing to see how God has carried her (and us) throughout this last year.The night before her birthday I was reflecting back on a lot of the things that we have had to endure this year. It kind of rocked my world. I haven't really allowed myself to reflect back on the last year until now. I'm not going to lie, I have a lot more anxiety and cry pretty regularly. BUT I have also seen and appreciated the grace and mercy that God has shown our family over the last year. Our lives before Ella seem like a lifetime ago. Reflecting on her birth, first open heart surgery, the night we almost lost her, and all that came with her first 6 months of life have been really hard. Honestly, I often try to find things to distract me from thinking about it. Thankfully I have a high maintenance little girl that often keeps me distracted 😀.
Eli and I made pancakes with sprinkles to celebrate and decorated the living room for her birthday. We had a family party at our house for her the following day and it was so fun. Ella has become so social and loves watching people. She has serious FOMO--Fear Of Missing Out-- so she often doesn't nap when she's around people. We had her sit at her high chair and all sang happy birthday as Eli helped blow out her candle. Matt then looked at me and whispered, "Hey, I was thinking it'd be funny to have her ventilator blow her candle out." So I relit the candle and we disconnected her vent real fast and it blew it out! It was so funny. When you have all of these medical things going on, you have to find ways to laugh about it or else you'd go insane. I was feeling kind of sad that Ella doesn't know how to eat and wasn't sure how the whole "cupcake-thing" was going to go, but it turned out better than I could have ever hoped for. Ella played with her cupcake, squishing the frosting and crumbling the cake around with her left hand. I looked away for a little bit then looked back at her and saw that Matt had his face close to her hand and she started to feed him. It was the sweetest thing, better than I could've ever imagined. I didn't feel like we "missed out" on any of the first birthday traditions that healthy babies get. We got something else, something unique, and something so special that I will never forget.
Next was Easter Sunday and it was the first time that Ella went to church!!!!! It was such a special morning. I texted our pastor the day before telling him that she would be joining us and that we would most likely sit outside so that her machines wouldn't make too much noise. He responded by saying that we are welcome to stay inside and those noises would be a blessing. I never would've looked at it like that, but how true. All of these noises mean that Ella is still with us, still growing, and still giving us those big toothy grins. We walked into the church to see signs made saying, "Reserved for Ella". It was so surreal. It was hard to hold back the tears. We were finally able to be a whole family at church. This was something my heart had hoped for, for a long time now. Ella loved it too. She loved watching the people and listening to all of the people singing. It was so great. Our pastor even announced that he doesn't normally point out when it's someone's first time at our church, but this was special. He proceeded to say how much Ella has been through and how excited he was that she was there. Lots of people came up to us to meet Ella and check in to see how we were doing. We were just about to leave and things started to get crazy, as they often do with our family. Eli took a dive, head first into the back of a chair, resulting in a rug-burn above his eye. I was handing Ella to Matt so I could comfort him and looked down to see a HUGE poop blowout all over my lap and a spot of it on the chair below. It seemed like things were going a little too smoothly for our little Waechter clan, so it was definitely appropriate that this was to happen. HA! It took us about a half hour to get my lap and Ella all cleaned up, but it was all so worth it. Getting to sit with Ella in my arms and Eli sandwiched between Matt and I made it all worth it. We are going to try to get to more church services before we go back into the hospital.
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| Egg Hunt on Saturday with our little buddy Trey |
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| Check out the reserved sign 💜 |
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| Baby poop. All over... |
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| Still smiling! |
The month of April was filled with lots of appointments, Eli's t-ball games/practice, work, Matt's softball games, family members in town, and ended with a golf tournament fundraiser for Ella. Matt's work had put on a car wash, online auction, and now they were putting on a golf tournament, all to help our Ella girl. It has been so incredible and humbling having so many people continuing to support us in all sorts of ways. We parked ourselves at the tee on Hole 1 so we could see people as they passed and thanked them for coming and supporting our family. We saw people that we hadn't seen in a long time and even one of the PICU nurses came! Ella didn't sleep a wink until we packed her up in her carseat when we were heading back to the clubhouse to meet up with people again, and even then she only slept for about 15 minutes! I tell you, she just loves watching people around her, it's so sweet how she smiles at people she's never even met. I love that about her.
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| One of Ella's nurses, Sharlene |
May hit the ground running with Eli's 4th birthday. I was thinking about his 3rd birthday and what a failure I thought I was because I couldn't decorate or make him something special for his birthday. It seems silly now, but it was so sad for me a year ago. I made sure to decorate this time and make a special birthday. I didn't have a nurse, so we couldn't leave, but we had fun activities planned and friends that came over to make him feel like it was his day. His grandparents all came over for dinner and dessert to celebrate as well. He had a small dino-themed birthday party with his buddies on Saturday as well.
So as you can see we've been busy, busy! Next is Mother's day, Open House at school, Matt's birthday, the end of school for me and Eli, then we are back in the hospital for the heart cath! It's going to fly by!!!
I will keep you all posted if anything new arises, otherwise I'll check back after the heart cath on June 10th. Thank you for continuing to pray for our family!!!
Here are some more photos of recently!
Love,
Jillian
