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

Home Almost ONE MONTH!

Man oh man! Where do I start?! I haven't been blogging because it has been absolutely insane around here. And I've been so tired that this has taken a bit of a backseat. But thank you all for continuing to think of us and pray for us. We've been VERY busy, but mostly good busy!

Ella had a cardiologist appointment last week and it went really well. Dr. Hill said that her heart function looks great and that the aortic valve leak looks about the same, possibly a teeny bit better. So yippee!!! I was really nervous to go to this appointment because the other cardiologist appointments have lead to Ella going back into the hospital, but not this one! It was really fun to see the cardiologists again! They've become like our family! Dr. Hill talked about the amazing things that are happening for the cardiac kids. There will be crazy advancements coming in the next 10-15 years. I pray that Ella will get to be a part of them! We have another cardiologist appointment next Friday and that one will be for BOTH of my kids. We switched Eli to have Dr. Hill too so he will get his annual echocardiogram to check on his VSD (hole in the ventricular septum). Our previous doctor thought that he most likely won't need surgery on it, but we shall see what it looks like this year. I hope he just outgrows it and doesn't need surgery. But if he does, we know he will be in good hands and we are kind of getting used to heart surgeries around here!

We also have had a couple of other appointments. Ella had an outpatient check-in appointment every other week (it switches between them and the cardiologist appointments). These consist of checking in with her oxygen saturation levels and her weight and they just monitor her overall growth/development. Ella has been growing really well and we have even taken down the amount of calories that we fortify the breast milk with. Her cheeks are so round and cute and she has baby rolls all over! My guess is that we will take down her calories again because she has consistently gained weight each day and it's a little more than what our goal is.

We also went to the pulmonologist appointment last Friday and I was so proud of Matt and I! We were able to get out of the house by 6:20am!!! Our appointment was at 7:30 and we were even early! Not much was accomplished... We got a referral for a sleep study (which is a step toward getting the trach out) and that's about it. We were hoping they would help us to know how to wean Ella off the ventilator, but our normal doctor has been out of the office on maternity leave so the doctor that was filling in didn't feel super comfortable since Ella is so fragile. We see our normal pulmonologist on the 15th of this month. I hope we can start the process of getting this girl off that ventilator! It will be so much easier for her (and us!) to move around without it.

Since the appointment with Dr. Hill on October 24th, Ella has been off oxygen support!!! We are so so excited about this! We've had to turn on the oxygen concentrator a couple of times, but only for a few minutes to get her sats back up, but she gets off shortly after. We've joked around saying that Ella just needed to see her echo and hear Dr. Hill say that her heart is "good" (for a hypo-plastic) so she felt like she didn't need it anymore. HA! I have been asking God for Him to take away something, whether it be the vent or the oxygen. And here we are! I can now move her a little easier because she isn't hooked up to two machines! I am able to hold her with one arm and push the ventilator with the other.

We had our initial physical/occupational therapy assessment today and Ella is showing signs of being like a 2-3 month old. That was what Matt and I have observed and said, but to have someone else tell me that our 7 month old has the development of a 2-3 month old was a little hard to hear. I have told Matt that because we didn't get to really experience Ella's newborn phase when she was tiny, we get to experience it now. 😊 Our nurse told me that she knows Ella will get up to where she needs to be, we just need to give it time. She was really sweet and reassured me that it will get better. We will likely have an occupation/physical therapist come out within the next two weeks and we will start getting this girl moving and developing!

Ella has continued to throw up unfortunately... We have slowed down her feeding time to eating 80mL over 2 hours, which has helped! But it's kind of a pain because she's hooked up to the feeding tubes and pump most of the day now. We only get an hour of her not being hooked up between each feeding time. We were down to 1.5 hours and that was a lot more manageable, which I know sounds funny, but the extra half hour was great! So hopefully we will get her back down. The other weird tummy thing that has just come up is that we have found blood in her poo... I have been on the phone with the GI doctor a couple of times today and we can't quite figure out what's going on. Her tummy is still squishy and she doesn't seem irritated like she was with her ulcer bleed, so we aren't sure what's up! There are no other signs that would help us figure out what's going on, so please pray that it will solve itself or that we can figure out what it is. We went and got blood work done today just to make sure she isn't anemic. We won't have the results for a little while.

Matt and I did our best trach change yet on Tuesday! The trach change is done once a week and it's where Matt and I have to pull the old one out and put in a clean, new one. It's always a little nerve wracking because we are essentially taking away her way of breathing, and not to mention we are pulling out and putting in a weird thing into a tiny hole in her neck! 😳 Pretty crazy! But we were just spot on this last time and worked well together and Ella didn't seem as irritated, overall it was a really good one! We still have to do the trach TIE changes every day, which involves taking off the ties around her neck that hold the trach in, one person holds the trach in (which can be tricky when she moves her head around) while the other does the washing around it, puts a powder on it, puts a new split gauze under the trach, and puts on fresh ties. Ella hates doing anything like this and I'm pretty sure we hate it almost as much! Hopefully this will only be for a little while longer.

Ella has two new teeth! Her top right and the one to the right of that one! It's so cute!!! Oh, and also, remember when I thought she has 3 bottom teeth? Yah... one is just a giant one with a little ridge in it so when it was coming through it looked like two separate ones, but it was just one big one!

Getting used to our new life has been really difficult. Matt and I are pretty exhausted emotionally and physically. We are SO thankful Ella is home, but it's a lot. It's been hard on us all. We are still adjusting, heck we've only been home ONE MONTH (as of tomorrow). I just wish it would somehow get easier, but maybe that's not what God has in store for us right now. One day last week, my friend came over and we just talked. It was so nice to talk about my life and about her life and not have it all about the medical side of Ella. It was finally a normal, but deep conversation like we used to have all of the time. I told her how it's been hard not to resent our situation and what God has asked of us and our kids. If you were to tell us that our lives would be like this one year ago when we announced that we were pregnant, we wouldn't believe you. This year has been the hardest, most painful year I have ever experienced, and yet, it has also been a beautiful year. It's amazing to look back at how far we have come. Some days I see the beauty and some days I can't see past the pain, but I know that God has been with me every step of the way. I told my friend about a bible study that I was looking into to help me get through these next few weeks and she and a couple of people from her life-group bought it for me that night! I started it on Monday. It's about thankfulness. I figured that if I focused on being thankful rather than looking at all of the crap that we have had to deal with, I would feel more joyful and would be able to focus on the good more. It has definitely helped, but honestly, some days are just a little tough to get to that point.

Eli and I went to the downtown trick or treating event on Halloween and it was really fun. After I got home, I got really sad though. I wished I could've experienced it with BOTH of my kids like the other families around me got to. It was really hard to not have my cute little unicorn with me and my tough dump truck. 😁 My friend mentioned that it's like I'm living two lives: one with Ella at home or the hospital and one with Eli out and about doing what we used to do while Ella's at home with our nurse (who I am so thankful for!). This really resonated with me because I haven't really been able to put it into words how I was feeling and that was just it, I was feeling like I am living two lives.

I am so thankful to still be home with our little Ella girl and Eli baby. Our family has been able to be together for the last month and I am looking to much more!

Ella with her favorite cardiologist!

Working on the head control!

One of Matt's coworkers gave Eli some money after he got his flu shot so we got some goldfish! Meet Goldie and Peaches!

Eli snuggling with Ella in her bed one morning

Daddy reading to the kids as Ella falls asleep getting a breathing treatment

Sorry for the delay in information, but like people say, no news is good news usually!

Love,
Jillian