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

Busy Busy!

Hi everyone!!!

Wow! Ever since I've gone back to work, life just has flown by. I am so sorry I haven't posted an update. I know many of you have been wondering how Ella is doing and overall I am happy to say... She's doing really well!!!

We have had a cardiac team appointment and a cardiologist appointment recently and both went well. Ella is continuing to grow really well and her heart function looks good. Her tricuspid valve seems to have a little leak, but Dr. Hill said that he's hoping that upping her diuretics a little will help solve the problem. Each time we go to the cardiologist appointments I tend to get a little nervous. It's been at these appointments where we've been told we need to go back into the hospital so there's always a tinge of fear that that will be the result of the appointment. Dr. Hill and I also discussed the possibility of Ella needing another heart cath to check on the tricuspid valve's leak and possibly close off any extra collateral veins that her body may have produced. So we just wait until that time comes! He mentioned that the heart team is now hoping to wait until next Spring, or until she is 2, to do the Fontan (normally the third) open-heart surgery. We were originally told that they'd like to do it when she hits one and a half, but the older she is, the better and the more likely it will be successful. The only thing that scares Matt and I about waiting is that we would still be in the "interstage" phase since she isn't a candidate for the Glenn (second surgery) due to her blood clots. This just means that we still wouldn't really be able to take her in public in case she gets sick since she is still so fragile. Good thing Matt is a homebody! 😀

During the cardiac team appointment, Ella threw up and it was one of the more stressful/scary episodes. For some reason we were able to hear her cry which meant she was REALLY mad and pushed air passed the trach and through her vocal chords. Although I appreciated hearing her voice, it scared me! I originally thought the trach came out, but realized quickly it couldn't be that because I didn't hear an alarm from the vent, and I looked and it seemed to still be in place. I was kind of glad this happened though because the nurse that we see at these monthly appointments saw why we are so concerned about the vomiting--yes, that's still happening, and there's no rhyme or reason as to why...


Good News! We were up to 13.5 hours of sprinting a day up until a little over a week ago! But Eli got a cold and Ella seems to have gotten it as well. Thankfully her oxygen sats have been really good still and there's no fever. So no hospital stay for us *knock on wood*. We have only noticed that she may be sick by the color of the secretions in her suction machine (it'd be like your boogers turning color when you're sick 😜) and she let us know quickly that she did not want to sprint for a while. We saw this by how frustrated she got when sprinting on the bi-pap setting and how her sats started lowering. We are hoping to start sprinting off of the vent again soon! I am praying that she will be on bi-pap completely within the next two months and my ultimate goal is to really have her off completely by late spring/early summer. But, like we've learned, it's not always about what we want. HA! I have also come to appreciate the ventilator a little more. I believe it's what is keeping Ella at home rather than in the hospital. The filters have protected her from getting even more sick. So I guess you win some, you lose some. It's all about the silver linings, right?

We have physical therapy on Fridays and occupational therapy on Mondays every week. The progress has been slow, but really good. We are still trying to get Ella to do some tummy time, but with the trach connected to the vent, it has made it extremely difficult. I am so proud of the development that we have seen and how well she usually handles the therapies and appointments.

Going back to work for me has been good, but also tough. I find that I am exhausted by the end of the week, especially weeks like last week where we had 3 appointments, 2 therapy hours, and on top of that Valentine's Day with a class full of sixth graders 😉.  But overall things at work are going well and I'm getting to know the kids a lot more and what they need from me to help them be successful. Speaking of school... My job share partner of 4 years is going back full-time next year. I am so sad to not be working alongside her and it also means that I will be switching grades. I will be going to a lower grade, not really sure which one at this point, but I know I need to work at least 40% part-time to pretty much break even with the cost of insurance and all of the other fun things that get taken out of our checks. So we shall see where God takes me!

I am realizing more and more how precious this life really is. I know that God tells us to live right now because we aren't guaranteed tomorrow, but often we get wrapped up in our own (relatively) comfortable American lives and forget what life is really about. I continue to pray for all of you who read this blog that you would know the love that Jesus gives to anyone who desires it. The only way that we have survived all that we have with Ella is because of God's grace and peace that only He can give. He has brought her through things that she "shouldn't" have survived and continues to use her to reveal Himself to those around her.

We are so thankful for all of you and the continued prayers for our family. We cannot thank you enough for all that you've done. Please pray for the families and medical staff in the PICU. We visited last Wednesday and it was busy! Glad we were just stopping by and not going in for a "stay". 😊

We stopped by the PICU before one of our appointments and got to see some of our favorite people!

Happy girl

Crazy family

How Ella holds her paci in since she's not really sucking it much, it's so cute though!

Eli and I took a trip with my coworker and her daughter to join our class at science camp! It was a fun day!

Loving science camp and the beach!

Ella loves her new bath tub. It's much more comfy and more her size!

Love,
Jillian

A Post I Thought I Posted A While Ago...

Hi everyone!

We went to the imaging center in Sacramento today to do the barium swallow study. I didn't know what that was until I looked it up, so I'll explain it in a nutshell for you! The nurse put a barium solution into Ella's tummy through the g-tube to watch the progression of it in Ella's digestive tract. While Ella's body started digesting it, the radiologist watched it move around in her stomach through an x-ray machine. He was looking to see if there were any obstructions or ulcers. It took about five minutes total and he said everything looked good. This was a relief but still kept me wondering why she throws up so much. I decided to look at it as a good thing and to be happy that there isn't some big issue in her tummy! The medical field really is amazing. The things that they do now is pretty incredible.

Ella was so cute during the appointment. She was so smiley and kicking around. She was so cooperative throughout the whole process. I had to turn her on her side, and then to her back, then to the other side, then back to her back, and she was all giggly (I assume this because we cannot hear her laugh because of the trach, but she looked like she was! 😃). At one point I was actually told to hold her legs still because she was kicking them so much. I cannot tell you how good that made me feel. A little over a month ago she wasn't moving a ton and now I have to hold her legs because they are too wiggly? Heck YES! It makes me smile just thinking about her cute little body on the x-ray table as happy as can be. I am so thankful that she just goes with the flow. She is a sweet, easy-going baby. I am so thankful for her. I still cannot believe that she is over 9.5 months old. SO CRAZY! What a nutty 9.5 months.

That's all for now. I will let you know if there are any other updates with the vomiting.

Love,
Jillian

The Progress We've Waited For!

Hi everyone!

First of all, I just wanted to say how thankful I am for all of you. Matt and I have a lot of "pinch me" moments when we think of all of you and how you have prayed for our family so diligently. There have definitely been days where we have felt like didn't have any words to pray and you all have interceded for us, so thank you!

Since the last post, Ella has really started to show us her little personality. It has been such a HUGE JOY for us to witness. She is so much more interactive and it has been the progress that we have hoped for, for so long. As I'm typing this, she is kicking her feet, grabbing her toes (with her left hand only at this point), smiling at her daddy, checking on the football game that's on TV to make sure Matt's team is winning, and waving her hand around. (see video below!!) She is seriously obsessed with Matt. It's so cute, she's definitely a daddy's girl!!! She has even been turning onto her side, trying to roll over! This kind of freaks me out because if she does roll over, her arms aren't quite strong enough to hold her up so the trach would jab her in the throat if she rolled all the way onto her tummy. But I guess if it happens we will learn how to help her build the strength so it's not so uncomfortable! It's pretty exciting watching her gain all of these new "tricks".

We have had a cardiologist appointment and a GI appointment. The cardiologist appointment went really well and Ella was just smiling away at Dr. Hill. This was his first time seeing her so smiley and playing with her toys (or paper on the table) and I think he was stoked to see her so happy and acting more like a little girl! It had been a month since we last saw Dr. Hill and a lot of social/physical development has occurred since then, before she would just lay on the table and look around. This time she wouldn't stop kicking around, playing, and smiling. It was so cute seeing her interact with him. There wasn't much to say at that appointment other than it seemed like her liver has gotten less swollen and we don't need to do echocardiograms each time now! These are great things! She is getting stronger and more stable! Yippee!

At the GI appointment, we switched her back to a different kind of formula that she seemed to tolerate a little more and came up with a plan if she continues to throw up. Well, the weekend passed and she continued to throw up 2-4 times each day. So we now have an appointment to go get a Barium swallow x-ray done this Wednesday (Jan. 23rd) in Sacramento. This will let us know if there is some sort of issue in her digestive tract that is making her vomit. We've noticed that there have been a couple of yellow colored vomits which I am praying is not bile. We shall see! We are also going to be giving her Pepsid in hopes to help with the acidity in her tummy. I am praying for answers from this x-ray!

On a different note, going back to work has been good but has brought about it's own challenges. I don't have the time after school like I am used to, to get stuff done because I need to get home to relieve the nurse by 4pm. I used to work past 5 or 6 every work night so I didn't have to bring home any grading, but I'm not able to do that so my backpack is full of papers to do at home now! I have tried to combat this by going into work early in the morning but have found I am exhausted at night and have fallen asleep on the couch a couple of times! Thursday night I fell asleep around 8 and didn't even have enough energy to do Ella's trach change so we were delayed a day in that! Matt has been amazing through it all though and has picked up so much of the slack. Like I've said before, he is inredible. He is such a selfless dad. I am one blessed girl!

Off to do Ella's trach ties now while Eli naps! Happy Sunday everyone!

Love,
Jillian

PS. Ella is up to about 6-8 hours per day of sprinting off the vent! Please pray for this to pick up speed so we can get rid of the VENT!

Back to School

Hi everyone!

Tomorrow is my first day back to work since February 28th of last year. So crazy to think that I was off for ten months. I have gone into the classroom a few times, some with kids, some without and I am actually really excited to be back. I think that once I leave our house tomorrow I may get a little sad, but I know that it will also be good for me to get out of the house a bit. Having Ella's condition in my face constantly is really tough. The reality of the ventilator and condition of her heart can get really sad and I think having two or three days a week where my brain is distracted by work will be a good thing.

Just a little update on Ella... She is definitely progressing physically and can grab things and move a lot more than she could when we left the hospital. The main concern we have right now is the continued vomiting. I can count on her throwing up on me almost every time that I hold her so it makes me nervous to do so. I don't want to make her feel nauseous or uncomfortable so I feel like I can't hold her as much as I want to. We have a GI appointment to change out her Gtube and to figure out what's going on in her little body. Yesterday she threw up a yellow vomit which we have never seen before. I am worried it is bile. Praying that we get some answers on Friday. (I will normally work Thursday and Fridays and every other Monday, but my job share partner switched with me so I could make it to this appointment... Don't know what I'd do without her!!!💜) We have have to go to the hospital and get Ella's digestive tract scoped... 😞  In other news! She has been sprinting off the vent again! Yippee! The progress is definitely slower than I would like, but I am trying to be patient! I have decided to look for the good in the vent: 1. We are able to hear her breathing in the middle of the night and quickly wake up when we hear the pattern shift when we are on "Ella duty" 2. I think it has kept her from getting sick this season because it has a filter 3. It's keeping her alive and breathing, which is a pretty big deal 😉.

Please pray for the vomiting to cease and for some answers on Friday.

Here are some photos from recently!

Eli got fake tattoos for Christmas and wanted Ella to have one too. She's a girl so she had to have a LADYbug.

Wearing beanies with some of his best buds

I LOVE this photo of Eli. He is getting so old!!!

Matt and I FINALLY got to go on a date! (First time since before Ella was born--other than when we were in the hospital, but I don't consider them dates-- we went to one of our favorite restaurants for lunch and to the river. It was beautiful. Thank you to my mom and friend, Sheila, for watching the kids!

Happy girl with piggy tails

Love,
Jillian

Joy in Suffering

Man I feel like there is just so much to say today! I just don't even know where to begin. While writing this, I found myself going back and adding information about this in that spot and that in this spot, so I hope it isn't too lengthy 😊.

I'll start with how wonderful our Christmas was. Ever since Matt and I got married, our Christmases have been jam-packed and amazing. We love our families and our traditions and have wanted to continue doing them, so we pack a lot into a small amount of time! Matt's brother, Tim, and our sister-in-law, Julie, came up on Saturday and we went to Matt's family's house to decorate cookies. It's so funny to see Ella in an environment that she isn't used to. She is so observant and looks like she wants to just take everything in. It was so cute watching her eyes get big when we would take her into a different room and to see how happy she was to be somewhere other than our house or our car. We spent a lot of time with Matt's family that weekend and enjoyed every minute. Christmas Eve came and it was weird for us because we weren't able to go to church together. For Matt and I both, Christmas Eve service was something that we loved and would help us get our brains in the correct mindset of Christmas. But this year, because Ella can't be exposed to any possible illness, we all stayed home and enjoyed the Christmas tree and some good Chinese food. We talked about how weird it was to not go to a Christmas Eve service, but really, what isn't weird in our lives right now? So it seemed fitting 😀

Christmas morning was filled with Eli and Ella opening their gifts with both sets of grandparents, uncles and aunt. Eli would rip open his gifts and Ella would grab a bit of the wrapping paper and I would pull the gift away from it so that it opened. She did a great job! I kept thinking to myself, "Man, I never would've thought we would get to do this with Ella." So many of the days in the hospital made this seem like it would never happen, but here we are! I must admit though, I made sure to decorate our house and wrap the Christmas presents early this year, just in case we would have to go back to the hospital. But hey! We didn't! We then went to Matt's aunt's house and enjoyed one of our favorite meals of the year, Christmas brunch. After we exchanged gifts and enjoyed our time there, it was time to get back home where we would have both immediate families for dinner. My mom and brother set up our house so that we had a long table to fit us all and made dinner. We enjoyed a yummy dinner and dessert at home. Usually we have dinner with my extended family with 30+ people, but this year we stayed home to keep Ella safe. It was a nice change of pace, but definitely felt a little weird not seeing all of my extended family.

The last few weeks have been a little tough because we cannot figure out why Ella keeps throwing up. We have switched her formula three times and still nothing seems to help. She's even on a hypoallergenic one and that still doesn't stay down. It's sad because many of the times that we hold her or sit her up she ends up throwing up. Not sure if it's because of the movement or the trach moving to trigger a gag or what, but it's sad when you aren't able to snuggle and hold your baby like you'd want to. It's frustrating. I ended up crying today while trying to hold her because all I wanted to do was snuggle her so I could feel closer to her, but she ended up throwing up and acted really uncomfortable. Once I laid her back down in her "happy place", or on the boppy lounger pillow, she was all smiles and was as happy as could be.

The blood that we originally found in her stool has moved up higher in her digestive tract and when I pulled up on her g-tube to check for residual, blood came out mixed in with her formula. We haven't seen it in her stool for some time now. We went to the lab last Friday to get bloodwork done, but haven't heard back yet. I am hopeful that it is going to come back and show nothing is wrong, but then we still won't know what's going on. We have a GI doctor appointment on the 11th so I hope we can get some things sorted out. The doctor has been off for the holidays so I haven't been able to be in contact with him. We've been able to talk with his nurse practitioner, but she doesn't really know Ella so we wait for our appointment!

Ella has been a lot more smiley and interactive with us over the last few weeks. We have seen a lot of progress in her physical and social development. She is now putting her hands together, reaching for her toes (only with the left side though), playing with her ears, and seems to be growing longer!

...

God doesn't call us to a comfortable life. No where in His Word does He say our lives will be comfortable.

2018 was an extremely uncomfortable year for our family.

Today I was in this funk where I felt like there is no light at the end of the tunnel with everything that we have going on with Ella. I decided to take a shower and listen to a sermon by Francis Chan. I have found that he often puts me in my place and always directs me back to the Lord and what my calling is here on earth... to serve and worship Him. So I googled "Francis Chan sermon pain". I decided to click on video with the title, Joy in Suffering. As I began listening/watching I recognized something about the podium he was standing at. This was a sermon he did at BIOLA! My alma mater! After that, I knew God was having me listen to that sermon for a reason.

Francis talked about how sometimes after we have been through intense suffering, we almost want to go back and experience it again. That may sound really weird to some of you, but the reason that we want to go back is because during that pain and suffering we experienced God's presence and intimacy with Him like never before. I could totally relate to this. Sometimes I find myself wanting to go back to the days where Ella was so out of our control that we had no other option but to lean on and cling to God. I felt this incredible peace over me the whole time we were in the hospital because I was so close with God. Now I miss that intimacy and closeness that I felt in the midst of the intense suffering. Even though we are technically still in the trenches with our Ella girl, we are in the comfort of our own home. It's different. Francis Chan went on to say how it's amazing how we want Jesus so badly that we want to suffer to experience that intimacy again. Seems so odd to think of it that way, but it's true!

He ended the sermon saying that the Holy Spirit will lead us into a crazy life, but a good one. I pray that God will give my family a spirit of boldness, and power that doesn't fear where He may lead us if we give Him control. I pray that God doesn't have us be people that believe only if... but may we be people who follow Jesus even if. I pray that God will give us courage to do whatever He calls us to do. That's my prayer for 2019.

The link to that sermon is here: https://www.youtube.com/watch?v=BTWyT79MbbY

Thank you all for going through this journey with us. We wouldn't be able to do it without you. Here's to a better year!

Love,
Jillian

Being a Nurse Rather Than a Mom

Hi all!

I said I was going to update you all on how Matt and I are feeling so here it is! I know more about how I am than he is so the post will be a little more about my side...

This last week has been HARD. The annoyance of the ventilator has really caught up to me and I have just had a rough go for a few days now. It almost feels like there is no light at the end of the tunnel.

The only way I can think to describe it is that I am tired of having to be a nurse rather than a mom. 

I have felt so robbed this week of all of the "normal mom" duties or pleasures. For some reason Ella has been super irritated the last few days and can't seem to get past the hump of sprinting for 3-4 hours. So her sprints have now become really stressful rather than something that we are excited about. The alarm is constantly blaring at us letting us know that her respiratory rate is high, which we already know... (She's just a fast breather, always has been and the docs were never worried about it, but the highest rate that we can set the alarm to isn't high enough for our little Ella girl) And the pulse oximeter alarm blares at us because it has a hard time picking up her readings, which is never a good thing when you are pushing her body to do hard things and need those readings to decide whether or not she can pass the sprint or if we should bail early. We've had to skip or cut the last few before the goal time. It's super discouraging. My "lofty" (as said by the pulmonologist) goal was to get her off the vent by Christmas so I could play with her and walk her around without being tethered to something. But that goal seems very unattainable at this point. It's hard for me to accept that my goal was just too far fetched. I think I just wanted Christmas morning to be more normal like all of our other Christmases, but I am learning that I need to be patient and flexible and to accept that things aren't always going to go the way that I want. I thought that I was done learning patience, but apparently God isn't quite satisfied with my progress HA! 😃

We aren't sure if Ella is getting sick or something, but I have had to guess and implement different things to keep her oxygen saturations where they need to be during her last two sprints. We have had to use oxygen the last couple of times to keep them up, but even that hasn't really worked. We even skipped last night's sprint to give her a little rest to see if that would help, but it didn't really... So I used all the knowledge that I learned in the hospital to help troubleshoot the low sats and, thankfully, she was able to make it to the four hour mark today. I am hoping she will be able to do it twice today like we have planned. I did everything I could think of... the procussion vest to help get all the gunk out of her lungs, suctioning more often, repositioning, and finally adding another dose of Albuterol to help open her airways. It was a lot. And I was on edge for a solid two hours just hoping that she could make it through the four hours so we didn't have to cut it short. She seemed super irritated the last couple of hours of her sprint and would cry a lot of it. I think she may be teething to top it all off because one of the top front teeth is just about to break through. Poor little girl...  In the midst of all of that, the three of us needed to eat lunch, feed Ella, and give her a water flush and four medications. It's exhausting! See what I mean when I say that I feel more like a nurse than a mom? I'm just hoping that it will all be worth it soon and the ventilator will be a thing of the past.

The last few days I have been clinging to the verse that I clung to when we found out about Ella's heart...  Psalm 13: 2-4 "How long must I struggle with anguish in my soul, with sorrow in my heart every day? How long will my enemy have the upper hand? Turn and answer me, O Lord my God! Restore the sparkle to my eyes..." How long can this really last? How long do we have to have Ella on the ventilator? Lots of questions like these have been flooding my heart this week. I don't feel like I have received an answer from God at this point, and that's ok. Thankfully, especially during the Christmas season, I am reminded of His love for me and that my biggest problem, my salvation and eternal life, is completely taken care of because of Jesus. I am thankful that even though God already knows the hurt in my heart, I can go to Him and wrestle with Him about it. 

Now on to Matt... He has been doing pretty well overall but feels the same feelings of disappointment with the trach and ventilator. A couple nights ago I just couldn't shake my discouragement and he was there to listen and grieve with me. He's so much better at handling things than me. I tend to let my emotions wear me down, but he's good at pushing those thoughts out of his head and moving on. I wonder if that's a male/female thing 😊. Work has been going well for him, but the weather has definitely added a little stress because when it rains he's not able to do his route so it puts him behind. If you know Matt, you know he LOVES Christmas lights and putting them up. We finally put them up this week and they have brought a lot of joy to us. Watching Eli get so excited about them coming on each night is so cute. 

Love,
Jillian

It's the Holiday Season

Happy December Everyone!

We have officially been home more than TWO MONTHS! Yay!

It has been really busy with doctor appointments, Thanksgiving, and now Christmas festivities. The week before Thanksgiving we had four doctor appointments, which I wrote the last blog post after. The week of Thanksgiving we didn't have any. And last week we had four appointments again. Ella has been showing a lot of progress so we won't have as many appointments soon!

The week of Thanksgiving was really exhausting because we were on night duty for four of six nights, but we made it! Thanksgiving was a fun day, but we definitely downsized our normal activities. We normally go to the Turkey Trot in the morning then we go to Matt's family's dinner then to my family's dinner. This year, my parents and brother stopped by our house in the afternoon then we packed up Ella and all of her equipment and headed to Matt's family's home (which is only about a half of a mile away). It was nice to be able to go out together as a family of four! It definitely took a lot of preparation but it was good!

We were so exhausted that weekend so it was filled with lots of snuggles and movies.

Me and my babies!

Ella Warrior Princess! Check out those war wounds! Tough girl! That little thing on her tummy is her feeding tube (G-tube)

Our usual nurse has been attending an intensive class so last week we had a new nurse and she had to jump right in with four doctor appointments! Last Monday we had a neurology appointment which went really well! Her neurologist seemed pleased with her progress and noticed advances that she's made that I hadn't even noticed! The main thing that was impacted by the stroke that she had back in September was her right hand. Her right foot and leg move almost as much as the left and her mental capabilities (as of right now) seem pretty good! Like I've said before, because Ella was in the hospital for so long, she is behind physically and mentally. But she has shown great improvement over the last couple of weeks! She is really smiley (especially when she sees Matt) and interacts a lot more with us and with toys. She is also starting to show a little more sass as well. 😆 She kicks her legs in ways that express her emotions. We can definitely tell whether it is a kick out of happiness or being upset. She also swats her hands and arms at us when she doesn't like something we are doing to her. I always laugh when she does that when I'm kissing her.

The next appointment was with Ella's cardiologist, Dr. Hill. He said that the leak in her aortic valve is back to being moderate from mild/moderate. This doesn't totally surprise me, but it's still a bummer. She is still gaining weight and her oxygen saturations are good so we are hoping to hold off the next surgery (which will be the Fontan--the 3rd surgery for normal hypoplastics) until next Fall. A lot of you have been asking about when her next surgery will be and the answer is... We don't know. She has a lot of growing to do before that surgery so we are praying that we won't have to go back into the hospital before Fall. This will be made possible if she doesn't catch a cold/any illness or if there aren't any major changes. If her oxygen saturations drop consistently, we will have to go in and either do another heart cath or she may have to have another open heart surgery to place a larger shunt that allows blood flow to her lungs. So there are many different possible outcomes with our Ella girl, but ideally she would grow and receive the Fontan sometime next year. I am under the impression that if we can put the surgery off even longer we will so she can be that much bigger and stronger. The scary thing about hypoplastics is that you just never know. They may be doing well one moment and the next... not-so-much. Ella has been a great example of the many things that "could go wrong" but she has also been an amazing example of what God can do. The fact that she is still with us and doing well is pretty incredible. The more that we get to know her and get to be home with her, the more I start to get scared that we will lose her. In the hospital there's almost a barrier that allows you to not get as attached, but we are well past that and I cannot imagine life without her now.

Friday we had a consult for the wound on the back of her head... Yes, that's still an issue... There is still a small hole that is open on the back of her head that I thought would be gone by now. We went to the Pediatric Day Unit at the hospital to get it checked out. I was able to swing by the PICU before Ella's appointment and drop off goodies for my friend whose daughter had her surgery in November. She wasn't there, but I was able to see little Brookie and she looked so good!! It was also fun to see the staff again! After we visited for a while, we got to Ella's appointment and were told it may never fully close, but we are putting a styrofoam-type collagen in the hole in hopes that it will close with that. If not, Ella's lucky she's a girl and her hair will cover it! 😉 We then went to her outpatient heart team appointment. We are still trying to figure out her nutrition, because as you will see in the photos below, she's a chunk-a-munk! We have taken her caloric intake down to see if that will be a good spot for her. Ella is still throwing up and still has blood in her poo so we are trying to rule out everything possible before taking her to get a scope done since that will have to involve anesthesia.

We have been sprinting Ella off of the ventilator and are up to two 3 hour sprints a day! This process is seriously at a snail's pace, but I don't know why I would expect anything else with our little one! She definitely seems a lot stronger in her sprints which makes me really hopeful!

Saturday, ALL FOUR OF US and Matt's parents went and got our Christmas tree! It was so fun! It took about 15 minutes just to get us all out of the car and ready to go with Ella in the front pack. This was her first time doing this and she wasn't much of a fan so we quickly snapped our Christmas photos and put her back in her carseat. You can tell in the photos that she got pretty blue while in the pack, but it was kind of sweet getting to hold her like I used to hold Eli. Check out all of the gear I wore to get her "mobile" around the tree farm. The cute little hedgehog backpack holds her food pump and milk and the long tubing and the square machine is her travel ventilator. I was packing on an extra 30+ pounds walking around with her! It was a good work out! 😊

Ella was super stoked to be in the pack... 😉

Ella in her stroller with all of her accessories

Eli doing his thing and climbing trees

I love this photo, but it's funny because we've talked about how much rounder her face looks in it, but doesn't she look so sweet?

Our biggest tree yet! 

Snuggling with her blankets

How Daddy has her snuggle up

He loves any kind of climbing now a days!

Ella watching us as we decorate the tree

Anyway, there's a lot more to say about how we are feeling about everything, but that'll have to come in a later post. We don't have night nurses on Sunday or Monday nights still, so I need to get going. And plus, I have a little boy that should be asleep next to me!

Love,
Jillian

Four Appointments

Hi everyone!

Been wanting to write for a while but decided to wait until after we went to our FOUR doctor appointments this week...

Monday we had an appointment with Ella's ENT (Ears Nose Throat) doctor to check the size of Ella's trach. He decided to have Ella go back to the smaller, neo size rather than what's she's been using, the pediatric size, because she has been gagging and it has seemed to bother her. I hope it helps! Ella gags a lot and I'm curious if her vomiting (yes, that's still happening--just not as much😞) has been because of that. The other reason it could be is because she's not very good at swallowing since she hasn't ever eaten by mouth, so when her saliva builds up in her mouth, it sometimes gags her. We should be receiving those soon, so that'll be good!

Tuesday we had a day off from the doctors, so I took Eli to preschool, ran a couple of errands, then took him to get his hair cut for picture day on Thursday. He looks like such a big boy! I can't believe how fast he's growing up. He has gotten a lot more used to our new normal, has been adjusting a lot better, and has shown more interest in Ella. He really wants her to be able to play with him now.

Wednesday we had an appointment for Ella's immunizations. She hasn't been able to have them until recently because they wanted her body to be more stable. Our pediatrician has been really great and supportive. He didn't want Ella exposed to anything in the office so he had his assistant come to our car to do it. Isn't that so wonderful?! I am so thankful for all of the people that have helped keep our girl well.

Thursday was our big appointment... The pulmonologist appointment. We were able to meet up with Ella's actual pulmonologist for the first time since July because she was on maternity leave. I walked away feeling pretty disappointed and defeated. She explained that my goal of getting Ella off the ventilator by Christmas was a lofty goal and she didn't even want to try... The ventilator has really put stress on us because it is so cumbersome. The only good thing about it is that it gives us a sense of security because it gives Ella a breath when she needs one. Ella is breathing on her own most of the time, but when she's really sleepy she will some times not breathe at the rate that it wants her to so it'll kick in. It's like she's going apnic (stops breathing). If this sleep apnea continues, she will have to keep the trach and the ventilator... I cannot imagine having the trach for more than a year more. It seems very daunting just thinking of another 6 months or so with it. We started doing sprints of time where she is just getting a pressure support, like a CPAP machine. We started with one 30 min trial, moved to two 30 min trials, then two 45 min ones and will continue to do it until she is on the pressure support setting at all times while she is awake. We wish we would've continued doing this from when we left the hospital so that she wouldn't have gotten so dependent on the vent, but we weren't confident enough handling the ventilator, so here we are! It's kind of like we are starting all over again... We were up to two 4 hour sprints when we left back in October. So far Ella has done pretty well with them!

I was pretty upset about this appointment... Everyone seems to tiptoe around Ella because it's like they're afraid of her (which rightly so, I guess 😃). I want to challenge her and get her off of this machine so that we can be more flexible with where we take her, even just around our house, and so that her motor development can really start. Matt reminded me that Ella has told us what she wants from the get go and she may surprise us again! Like when she was supposed to have a pace maker but then her heart kicked it into gear, the first time we left in June we were told we'd have a ventilator with us but Ella told us otherwise, and when she told us she was done with the oxygen back in October. Ella does what she wants... or at least that's what we say, but we know God is ultimately in control.

Friday we had another appointment with the outpatient cardiac team, but it was cancelled due to the air quality, so we did an appointment over the phone. Ella has been gaining weight like CrAzY so we are going to be taking down the calories in her formula... Oh yah, side note, we suspect the blood in her poo was due to a food allergy of some sort. We took away the breastmilk for a little over a week and it went away, along with the horrible diaper rash, but it's so hard to say what food she's allergic to since it was milk that I froze back at the end of May. Back to the appointment!... We are going to be adding a protein powder to her milk because lowering the calories would also be lowering the protein content, so we are waiting on the protein to get here to change her formula. She is such a cute little chunk!

Recently I have really struggled emotionally. I am still trying to accept what our lives are like right now and that they will be that way for at least another year. I miss being able to just get up and go out with my kids. I miss having date nights with my husband. I miss sleeping hahaha! But I know this should all pass relatively soon, I'm just struggling to accept it for now, but I will get there!

We visited the PICU last week which was really fun. We were there to say hi to our friend who's daughter just had her heart surgery. It was nice to see everyone and show off how well Ella's been doing. Everyone was so sweet and was excited to see Ella, Eli, my mom and I. One of the surgeons said that when he heard that we were there he got nervous and asked, "What happened?!" but once he found out we were just visiting he was happy to see us! The other surgeon asked about her sats, calories, and was checking in on how she's doing overall. We are so blessed to have all of them in our lives! During that same trip we had Ella's cardiologist appointment and Eli's as well. We switched him to have Dr. Hill so he and Ella would have the same doctor. Eli's VSD (hole in his ventricular septum) is still large, but has a flap over it so it's acting like a small one. There's still a chance that he would need heart surgery at some point in his life, but as for now, we continue to get him an echocardiogram each year and watch it.

Hope all is well with you all! We are so thankful for the continued support that you all show us. We are thankful for all of the prayers, financial support and meals you've given us. We are so blessed. We don't know what we'd do without all of you.

Finally getting more comfortable with Ella's trach and vent to the point where I put her laying on my chest. It's tricky but so worth the snuggles!

Eli playing with his buddy Trey in our laundry basket.

First ponytail!

Eli doing such a good job while getting his echo.

This is what happens when you have a brother... he puts marbles in your belly button.

Ella has been getting good at holding her head up! The machine behind her is the ventilator.

First little pigtails! AAAHHH I may do her hair like this all of the time from now on. It's so so cute!

Love,
Jillian