Two BUSY Months!

Hi everyone!

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.

Egg Hunt on Saturday with our little buddy Trey

Check out the reserved sign 💜

Baby poop. All over... 

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.

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

A Quick Trip and Some Donuts

Hi everyone!

So things got crazy REAL fast on Thursday morning. Matt and I had been on Ella duty for 3 nights in a row because Eli, Ella, and I got our nurses sick. I was up early Thursday morning and was getting ready to say goodbye to Matt and Ella as I was leaving for work and then Ella started to throw up.  Ella's heart rate tanked to the high sixties and low seventies which was a little lower than usual. Now all of this is all pretty normal up to this point, but here's where it got nuts... Her heart rate wasn't going up like it normally does after vomiting, so Matt and I thought that it was an issue with the pulse ox's measurement. We switched the pulse ox probe to the other foot... same results... weird. Opened and placed a brand new probe on the other foot... same results... weirder. Matt and I look at each other and say, well, now what?! We definitely didn't want to give her compressions and she was acting similar to her norm, just a bit more sleepy. So we agreed it was time to call 9-1-1. I was on the phone with the dispatcher for a while and they were at our house within a few minutes. During those few minutes, our home nurse showed up and we all quickly started gathering everything we thought we'd need at the hospital. Let me tell you, we thought we had to pack out a lot of stuff when we had a less complex baby, Eli, but Ella has taken it to a whole new level. We made sure to grab the normal stuff like diapers, wipes, the baby bag, extra clothes etc. but we also had to grab the trach supplies, medication box, suction machine, pulse oximeter, ambu-bag (what we'd use to do CPR if needed), oxygen tank/connectors, travel ventilator, HMEs for the ventilator, formula and feeding pump, electrical chords for all of this and the list goes on... While we all gathered her things, I called Ella's cardiologist, Dr. Hill, and explained that we had to call 9-1-1 and then broke down crying. I handed the phone to Matt to have him explain it all to him. I quickly pulled myself together as the fire engine rolled in sirens and all.

The paramedics showed up and we immediately told them she has Hypoplastic Left Heart Syndrome and explained what her oxygen sats should look like, explained what had happened, and asked if we could be transferred to Sutter Sacramento. They made a couple of calls and said that they'd be able to take us there which was a HUGE relief. The hospital here wouldn't have known what to do with her anyway. So Matt, dressed in his work clothes and ready to go to work himself, got in the ambulance with Ella and the EMTs. I was planning on driving behind them but was then told I could go with them as well. So I grabbed a shirt for Matt and some comfortable shoes (because I was wearing heels, a skirt and a nice blouse for work) and we were on our way. Ella, by the way, was so curious about everything and just kept looking around at the equipment in the ambulance then took a little nap to gear up for the ER.

During the ride, we handed the EMT the binder that we take everywhere that explains everything about Ella. He looked over it and couldn't believe all that she's been through. Our tough little chicky. 😊 He then proceeded to tell us that he was on his way to work this morning and got a call from one of the other EMTs asking if the call was for his family BECAUSE HE LIVES IN OUR APARTMENT COMPLEX! WHAT?! Small world... So he quickly turned around and called his wife panicking because he has a kid ELLA'S AGE!!! So he wasn't sure if the call was for his son! SO NUTS! What are the odds?! It's nice to know we have an EMT a couple of houses away now! We continued on our journey while Matt measured out her meds and I suctioned Ella and chatted with the EMT about her.

Matt in the ambulance with Ella

Just hangin' out in the ambulance 😂

After we arrived at the ER Ella's heart rate was stable in the high seventies to about eighty, which is still really low for her. She is normally around 110 when awake and high 90s when asleep. We walked into the ER and were greeted by a friend that is one of the heads of the respiratory department at Sutter. It was nice to see a familiar face. We got into the room and they wanted to get an IV line put in just in case they need to deliver any rescue meds and to get blood work done. Well, I think I've said this before in our blog, but Ella is a tough poke... The first poke was done and she was TICKED. Her heart rate jumped up to the high 140s to low 150s and stayed there for quite some time. Matt jokes now that if that ever happens again, we just need to pinch her or poke her with something to get it back up. They had to call in multiple nurses/IV therapists, poked a total of 6 or 7 times, and still couldn't get one that would work to draw blood from, which really wasn't a surprise to me.

Silly little girl.

The PICU has been slammed so they had to move some patients around to get Ella in. Five or so hours later we were taken to the PICU where we were greeted like celebrities! Everyone kept saying, "We're so sad you're here, but so happy to see you!" It was like we were at a big ol' family reunion. By this time I was completely wiped out and had a mean headache. All of the exhaustion from staying up the three nights before and then the stress of the morning had all sunk in and I had to lay down. I ended up falling asleep on the couch in Ella's room while Matt explained everything from what happened... to how much she eats... to how far to suction... to what size diapers she's in now. I woke up about 45 mins later and the headache didn't subside. I quickly remembered that we had Ella's meds with us and she has aspirin! HAHA! I took some and quickly felt better. Matt and I hung out for a while then my parents showed up with all of our clothes, pillows, etc. that we would need to be able to stay the night. We left them with Ella and drove to the Ronald McDonald House to check in. We were so thankful they had spots open, often you get placed on a waiting list and have a couple of nights in the hospital before you get a room. We went back to the hospital and then left around 9:30pm.  That whole day we were greeted by nurses, RTs, doctors, surgeons, PAs, and Child Life staff. It was fun for us to show everyone how much Ella has grown and how well she is doing overall (even though we were in the hospital 😂). We even had some people say, "I'm impressed this is the first time we have seen you! Way to go guys!" Almost everyone commented on how much hair Ella has now and how many teeth she has gotten. She flashed her big toothy grin at everyone as they came to visit her.

Our crazy-haired child still feeling a bit under the weather but as sweet as can be.

When we returned to the PICU Friday morning, we rounded with the doctors and got a lot of pretty BIG NEWS. First, we knew Ella was sick and tested positive for rhinovirus (which is the fancy name for a cold). Then we were told that Dr. Hill and Ella's surgeon, Dr. Watanabe, were talking about having Ella go in for a heart cath to check out a lot of stuff: the pressures in her heart and lungs, how many collateral veins have opened up, what the status of the blood clots are in her neck, and most importantly, how big the IVC is. The inferior vena cava (or IVC) is a large vein that carries the deoxygenated blood from the lower and middle body into the right atrium of the heart. Now you may be wondering why the IVC would be getting measured, and we did too at first... There is a possibility that Ella may be going in to get the "third" surgery, the Fontan, much sooner than we anticipated. The third surgery uses the IVC. Dr. Watanabe visited us on Thursday night and we could tell that the wheels in his head were turning, but we didn't exactly know why. Come to find out, he and Dr. Hill talked the next morning and because of Ella's size, Dr. Watanabe wants to do the Fontan soon to get her out of the risky interstage. Now mind you, we had been told it would probably be in the fall of 2019 then we were told it may be closer to when she is 2 in the spring of 2020, but now we are looking at a possible surgery this April. Maybe this is why God had this all happen, if Dr. Watanabe hadn't seen Ella I believe we'd still be on course to do the Fontan later in the year.

Whhhhaaaatttt? 

Matt and I were shocked! We couldn't believe it. We were a little excited and want Ella out of this risky interstage period. And because of the clots in her neck this period has been extended longer than normal due to not being a candidate for the "second" surgery, called the Glenn. As exciting as this could possibly be, we are also kind of scared. Back when Ella was going through her first three surgeries, we didn't know her as well so I found it a little easier to handle it all, but now that we've had her home for so long and built more of an attachment to her, I am a little nervous to go and relive all of the scary moments and everything that comes with a child's open-heart surgery. Just the thought of seeing her intubated through the mouth again freaks me out a little. But I know God has a plan for her and we have been through so much that I am almost calloused enough where I feel like I can get through almost anything at this point. 

The other topic that we discussed was if her IVC is not large enough (at a 15 or higher), we would aggressively work to get her off of the ventilator while in the hospital!!! The PICU doctor doesn't relaly see a reason as to why she even needs the ventilator. We've even been taking her off to do certain things (for only seconds, but still!) and it's like it doesn't even phase her. The doctor even mentioned doing it during this stay, but then remembered she was sick so we better play it safe and wait until she's back for the cath. We even talked about an ideal situation of Ella having the Fontan, getting intubated through the mouth, taking out the trach, and LEAVING. IT. OUT. What?! Could you imagine?! No interstage? No trach? Sounds waaaayyyy too good to be true... Now, Matt and I are certainly NOT holding our breath for this to happen, but that would be best case scenario and would completely change our lives. But I am holding on to the fact that we will get her off the ventilator soon and that alone will change a lot about our lives. And as we've all seen through Ella's life, God does big things and things that we don't expect. So we shall see! Yippee!

We made a tentative return date of April 15th (while I'm off of work for Spring Break) to do the heart cath and see what will be the next steps. So we have 6 weeks to keep this girly growing and strong at home. 

After all of that news, we went into Ella's room and saw her big smiley face. We were told we could leave as soon as all of the discharge paperwork was filed and then we'd be on our way! We did a trach change, chatted with Dr. Hill a little more, cleaned out the Ronald McDonald House, ran an errand to pick up a supply for Ella's trach stuff, and then we left around 4pm.

Fast-forward about 15 hours we got everything loaded back in the car, plus Eli 😉, to head down to Sacramento for the Donut Dash, a Child Life fundraiser. We weren't sure if we would take Ella out of the car because it was pouring rain, but it lightened up and we ended up all going and had a blast. We ran into a lot of friends from the hospital and they were so excited to see Ella there. It made me so happy to be able to finally get outside and do something "normal" (I hate that word now) for a change. Ella rode in her stroller like a champ, smiling along the way, and we feasted on donuts halfway through the walk. Here are some pictures from the event...

Ella all snuggly and ready to go!

TEAM ELLA
(minus the Bestelmeyers, Tomlinsons, and George Newman!)

So excited for donuts!
And yes... Eli somehow managed to eat all 6 donut holes without us realizing!

Ella and I with Sarah from Child Life (who is amazing by the way) and Dr. Falco!

Woo Hoo! Donut Dash baby!

Some of our favorite PICU nurses and Dr. Falco!!!

We got to see our other heart warrior buddy, Everley, too! Check out that pose! 

Ok so really fast before I log off, I wanted to tell you all about how God is SO IN THE DETAILS. Thursday morning I was running a little behind and hadn't left by the time I normally would, so I was able to be there with Matt when things got crazy -AND- Eli was spending the night at his grandparents, so he didn't get traumatized by all of the paramedics and watching his sister get taken out on an ambulance. Praise God right?! So thankful how it all panned out and that it wasn't much worse. We shall see what God has planned now!!!

Love,
Jillian