Our New Norm

Hopefully this post will make sense... I am a little sleepy!

We made it home around 2 in the afternoon and hit the ground running. We were greeted by three home nurses and one of the company's coordinators. We explained Ella's story and condition to them and Matt unpacked the car. We had so many things to unpack, I am STILL unpacking!!! It's pretty crazy how much we accumulated down there and how many things we were bringing home for Ella. It was kind of a blur.

Shortly after, Eli joined us at home and it was so sweet seeing him get so excited that his baby sister was at home! He has said to Matt and I multiple times, "Mommy, Daddy, I am so glad Sister is at home with us." He has been such a big helper. He has gotten used to all of the machine noises and even her little noises that she makes. He tells us when he thinks that she needs a "shuction", or suction. Because Ella has a trach, we are constantly having to be on alert and listening to her to see if she needs help clearing the trach with a suction machine. Eli will turn on the machine while Matt or I suction out the secretions (sounds a bit nasty, I know, we had to get used to it). He is often found kissing Ella's head or trying to give her books or toys. He really is a special kid and a great big brother.

Around 5:30pm on Tuesday, three of the four ladies left and our day shift nurse was here with us. It felt really awkward at first to have someone in our home that we didn't know. We are still getting used to it all. We have a daytime home nurse for 4 or 5 days a week and a nighttime home nurse 6 days a week. Neither of our nurses have had a heart baby before, so we had to explain a lot. They are really educated with the trachs so that's really helpful.

Just before dinner, Matt had been unpacking our things and looking for my engagement ring diamond while he carefully pulled things out. I had this weird feeling that we would find it in Ella's carseat under the cushions. I told Matt to look under there and YAY! We found it. God is good. But really, if we hadn't found it, Matt and I would have had a total peace about it. But I am so glad we did find it. Now we just need to get it fixed.

We have had 8 hours each day where it's just our family at home other than that first day. I really enjoy when Matt and I both are here. We just help each other out and the flow is so much more natural. It's hard to trust someone else with her medications, so I think we will continue to just keep measuring/administering them ourselves for a while.

Speaking of meds... We went to the cardiologist follow up appointment and our doctor, Dr. Hill, is out for three weeks so we are seeing his coworker. We were told to go down on the diuretics on Friday, so I did, but Ella has not responded well to this... We have had a few nights of super low sats (oxygen saturation #s) and the only thing we can think that is contributing to this was taking out her 3rd dose of the diuretics... We kind of had a weird feeling about going down on the diuretics and we think we see why now. Today she went the lowest we've ever seen at 59 (she's supposed to be 75-85, normal people should be close to 100). She went really blue and we didn't know what to do. We have also been on edge a little more today because last night we were without a night nurse and slept 4 hours or so each because we had to take shifts watching her. I contacted the cardiologist 24 hour on-call doctor and he wasn't sure why she was satting so low, but if it continued we would have to jet down to the PICU. Thankfully, it got a little better, but she's still struggling tonight. I am guessing that her lungs are getting excess fluid in them because of going down on the diuretics, but I am not totally sure. She's still satting low at 71ish So please please pray that these numbers come back up.

We had our follow up appointments for her Lovenox levels and wound care at the Pediatric Day Unit (PDU) in the hospital on Friday as well as the cardiologist appointment. It was crazy how I got all anxious once we got back into the hospital. All of the feelings that we felt when we were there rushed back to me. But I quickly got over it 😊Her Lovenox levels are right where they want them to (hopefully) help clear up the clots. (Poor baby had to get pricked a lot to get enough blood for the tests) We still absolutely HATE giving the shots to her. I feel like she's always sleeping when we have to give them to her. Talk about a rude awakening... Another wrench was thrown our way that morning when I was giving Ella some of her meds. She is on Prevacid for her acid reflux and we have to dissolve a pill in water then soak up a third of it. We did it this way because the PICU pharmacist said it would be expensive otherwise. Well, I clogged her NG tube with it. So thankfully I was already on my way to the Pediatric Day Unit. Once I told the nurse that it was clogged she told me we would probably be there for another 2-3 hours because they'd have to get an X Ray to verify that the new one was placed correctly. I texted Ashley and she came up and worked her magic and poof! It cleared up! Once again, I was so thankful for her. And since then, we have ordered the liquid form and don't care how much it costs.

Matt went back to work full time starting last Friday. I miss him so much when he's gone. He is so good at caring for Ella. I wish we could always be home together, but I am just SO thankful for all of the time that EPC has given him off. It was invaluable to me. Having him gone just makes me extra thankful for the time that he is home.

I have found that even though we are home, the constant care doesn't stop. If anything, it's more. We've had some really stressful days/times and some really great times. It is hard accepting that this is our new "norm". I have found myself not eating or washing my hair (sorry if that's TMI) because I've been so busy. I can't help but hold out hope for those clots to go away so that she can get her 2nd surgery so that Ella is a little more stable. I keep pleading with God that Ella will be off the trach ASAP as well. I was told by the day nurse today that having a trach apparently feels like you have a dry, sore throat with thick spit constantly making you cough. Poor baby has to deal with a constant cough and irritated throat. It breaks my heart thinking of all of the (for lack of a better word) CRAP Ella has had to go through. I have found myself asking God, "Hasn't she had enough? Please give her a break!" It's so hard watching your child have a chronic illness. I am still grieving the fact that she is not a normal baby. I am so glad that God wants us to come to Him and seek Him even when we are unsure or frustrated with His plan. I keep thinking of how He allowed Jacob to wrestle with Him. I am thankful that He hears our cries.

Here are the updates on Ella's medical stuff:
Head Wound: Looking "beautiful" and "so good". The deep opening has gotten so much smaller and is probably a little bigger than a sesame seed. We've continued to follow the wound doctor's orders and have used Medihoney on it. That stuff is no joke! Great job bees! 😜
Sats: Low. Need to come up. There is probably excess fluid making it harder for her to breathe.
Chest Incision: stitches will be taken out this Thursday by Dr. Watanabe. It's looking really good.
Clots/Brain Bleed: no idea. We will eventually get an ultrasound sometime in July to see if the Lovenox is helping.
Trach: we are getting pretty good at caring for it. It's definitely not our favorite thing to do though. I am just glad we can't hear her cry when we do all of it because it would be so much worse. We see the pulmonologist on July 5th to see when she thinks Ella will be able to not have it anymore. Please please pray it will be soon.

Anyway, I just wanted to say thank you once again for all of your prayers. And thank you to the people that have brought food or are going to be bringing us food. It has seriously been a HUGE weight lifted off of our shoulders. The generosity of the community around us has seriously stunned Matt and I. We cannot believe how amazing you all are. Thank you.

Love,
Jillian

A Long Time Coming

SHE'S HOME!!!!

We have been so insanely busy since we've gotten home I haven't had any time to blog, so I'm sorry if you've been wondering how we are doing.

I will start with the day before we were discharged, so Monday, June 18th. We were told that Ella had a sternal wire that was poking its way through the skin on her sternum so she would need to have another procedure where they would cut a 3cm incision in her chest and remove the wire. This wire was here because it closed up her rib cage after the surgery. I joked with Ashley (the surgeon's assistant) saying that Ella always has to throw one more thing at them as a nice goodbye, you know, something to remember her by 😉. We were told that if she can have the procedure done with just local anesthesia (numbing near the site) we could take her home Monday at 6pm, but if not, they'd have to take her down to the operating room and use the general anesthesia. I prayed and prayed they would only need to use the local. I kept thinking about how they would have to put her on the ventilator again if they had to use general anesthesia, and I was so scared that all of the hard work that she has done to breathe on her own would be all for nothing and we'd need to take home a ventilator. PRAISE THE LORD the local worked! Matt and I sat in the playroom next to her room and peered in every once in a while to see if they had finished. The procedure itself didn't take long, but turning her "bedroom" into a sterile environment took time. We were so thankful and relieved it went well. We were told we could go home that night, but to be safe, we decided to wait until Tuesday morning... We didn't know if Ella would throw us another curveball, and this way we were able to get a good night's rest and move out of the Ronald McDonald House.

The next morning, we packed up all of our stuff-which was a lot considering we were there for over 2 months. I can vividly remember Matt looking at me with a huge grin on his face saying, "We are finally the ones who get to go home!" We had watched many families come and go during our stay at the Ronald McDonald House and this time it was our turn. We are so thankful for the RMH. It was so nice to have somewhere close to stay that didn't cost our family an arm and a leg. I will never look at a coin dropbox in the drive through while getting my $1 Dr. Pepper the same. I will also never look at soda can pop tabs (the things that pop it open) the same either. The RMH collects those to get money from recycling them. I am hoping to head up a collection at my school next year. It's pretty amazing how many families that are in tough situations are able to find refuge there.

After packing up, we headed to the hospital with smiles on our faces. After 75 long days we were finally going be the people that get to walk out of the hospital with their baby. It was a really surreal experience. We had nurses tell us a lot leading up to our discharge that they weren't sure if we would ever be able to take her home. They see a lot of scary and sad things in the PICU and for them to tell us that they weren't sure about Ella, made us realize how blessed we were to be able to take her home. It was finally rounds time where the doctors talked about their patients and Ashley walked into our room, with Dr. Watanabe, the PICU doctor, pharmacists, and nurses behind her, and she said the words that we so longed to hear... "You guys are officially discharged!" Everyone started clapping, cheering, and smiling. Matt and I wished we had it on video. It was one of those moments that I will NEVER forget. It brings tears to my eyes just thinking about it. It was also really sweet to have the whole team of people there that had been working so hard to keep her alive.

(left to right) Ashley, Dr. Nasirof, Ella, me, Dr. Watanabe

Dr. Watanabe with Ella. He is such an amazing man. He always laughed at us 😃
You can't tell by this picture, but Ella loved being held by him.

Thank you Dr. Watanabe and Ashley!

Ashley holding Ella

Shortly after, we took pictures, Matt took many loads of our things to the car, and said our goodbyes. Ashley walked us to our car. I cannot tell you all how much she means to me. Although we don't know each other very well, she has been one of the biggest gifts to me. God placed her to be there for us through this whole thing and I cannot thank Him enough for her. It was so special to have her see us out.

Now here's where things get crazy. As we were about to load up our car, I felt like something was missing on my finger. I looked down and POOF! the diamond in my engagement ring was GONE! The prongs and all! Ashley and I walked back up to the PICU and retraced our steps looking for it while Matt took care of Ella and looked for it out by the car. We couldn't find it. Everyone in the PICU was searching for it and it was no where to be found. I had this weird peace about it though. I figured it got caught on something and was probably in one of our bags or in Ella's carseat. I switched places with Matt and after looking for a while, we decided that it was time to go home. I posted a "story" about it on instagram and my friend, Staycie, replied saying, "How metaphorical though... Ella is more precious than jewels." And that is exactly what Matt and I thought. Her whole life has changed our outlook and perspective on things. I was surprised by both of our reactions because we kind of laughed about it and said how it seemed appropriate to end our time at the hospital like that.

Ella was able to take her mobile from the hospital home with her. She LOVES it!

Ella loved looking our the window while we were driving. She saw so many new things!

WE MADE IT HOME!!!

In the next post I will talk about how life has been as a family of 4, but for now, it's time to sleep!

Love,
Jillian

Night 2 of the Room In + PHOTOS!!

I am on my waking shift now, so I figured it'd be a good time to let you all know how the 48 hour room in has been going!

We have found ourselves very busy! Between the medication and feeding schedule (see below), talking with staff members, the different physical and oral stimulation practices to help her develop (since she's a little behind), the tracheotomy care, and the wound care, there are only a few hours that we feel like we can simply be with Ella. It's pretty crazy how much time all of that takes. I find myself a little nervous to go home and have a 3 year old thrown into the mix! But we will have lots of help from family and friends (thank you!) and home nursing. As of right now we have a home nurse 4 days and 5 nights a week. The agency that we are going through has some really great people in their office and have been really supportive. They even think that they may be able to get us nursing 7 nights a week! That would be a huge help. After last night's room in I was a total zombie all day with a headache to top it off. I took a nap around 5:30pm and felt much better afterward. So having the night nurse will be such a relief!

I've learned that Ella likes to be awake and get crazy (setting different alarms off) while I'm on "night shift". Poor Matt has to deal with the alarms going off when he is "allowed" to sleep. I've kind of enjoyed those waking hours though. She is so cute and I just stare at her and kiss her cheeks. It's been a sweet bonding time for us.

We have pretty much accomplished everything we needed to for the room in, but we have one more thing to do... the carseat challenge. Any NICU/PICU baby has to do the carseat challenge here at Sutter. It consists of Ella being buckled in her carseat for 90 minutes. To pass, she cannot get weird heart rates or SATs during those 90 minutes. Today we accomplished... 18... HAHA! We knew this may be tough for her because of the wound on the back of her head, but we are going to just keep trying. We learned what to do for the next time to help her be more comfortable so hopefully we can do it tomorrow! Please pray she passes!

Medical Updates:
Breathing/Trach- Ella is doing well! She just has a humidifier cover (HME) on during the day and wears a mask that delivers mist over the trach at night. They essentially are her "nose". I believe I wrote this already, but the doctors are hopeful that by the time she's 6-8 months old she won't need the trach any more.
Heart- Ella's heart is still going strong and functioning like a "hypo-plast" (that's the cool hospital lingo for hypoplastic left heart😉) does.
Wound- Getting SO much better. The wound nurses have been diligent in checking in on her and teaching us how to care for it. It's about the size of a pencil eraser now.
Clots- No progress (better or worse) that we've been able to see. We keep telling people that we prayed for God to help her not need the pace maker and her body kicked in at the last minute, we prayed for no ventilator and her body later kicked in, and now we pray for these to go away and I have hope that they will do as the other things did! Some of the doctors don't think they'll ever go away, but we know God is BIG and can do whatever He pleases--we're just hoping that He wants them to go away 😀.
Brain Bleed- Got a bit smaller last week, but this week no progress. It just takes time.

We received the equipment that we would be going home with a few days ago and have been using it for the room in. It is SO much louder than the hospital equipment. We've also found a few little things we needed fixed so we are glad we tested it out here instead of just turning it on at home and realizing we needed things fixed. So that's good!

Our official start time was 10:30am on Friday, so we will be done with our "test" mid morning tomorrow. I am glad the hospital has things like this in place because it helps families be more prepared to care for their special needs baby.

Oh! And latest curveball Ella is throwing at us is that there are sternal wires that are trying to make their way out (EEK!) so the surgeons are going to have to open her a bit to cut them down a little.... So that could push our departure date to Tuesday. I am a little nervous about this because of the local anesthetic doesn't work, we will have to put her under again and on a ventilator while she's under. I hope she won't need to go under because I'm afraid she won't be able to get off the ventilator again, but I am praying for peace with that...

We've been saying our goodbyes still and it has been hard! I will really miss everyone!!!

Here are some recent photos!

Bath time for Ella!

Flying a kite at the Ronald McDonald House

Rivercats players visited the hospital

The Rivercats were playing the OKC Dodgers so we went to the game. It was a blast. 

Holding the bunny that Eli got for her for Christmas last year.

We were practicing how to give CPR to Ella if needed on this doll and Eli loved it. It has a trach like sister!

My organization skills with her feeding times and medications. It's a lot to keep track of!

Love,
Jillian

Day 1 of 2

Today was our first day "rooming in" at the hospital. We essentially just did what we've been doing for a little while now but with a little less help. We are required to know when Ella gets fed and when her medications are due.

Matt was almost giddy this morning in anticipation. He walked onto the floor and said, "Start the timer!" 😁 We set up all of our home equipment in Ella's room last night so we were prepped and ready for the stay. Her equipment is MUCH louder than the equipment that the hospital has. The suction machine sounds like a small generator and her trach mist that she's on at night is a loud white noise.

I think the hardest part so far has been making sure we are staying on top of her medications. We've done a good job at it but I'm curious what it is going to be like when we are at home with Eli and other things distracting us. We have a pretty good system though so I'm sure it'll be totally fine and soon become routine. Today I spent some time organizing a new daily check off for her meds with the correct dosage and times for each one. She will be going home on a total of EIGHT medications. One is for her heart, one is aspirin to thin her blood, one is the lovenox blood thinner, 2 are reflux medications (this is super common of babies that have had heart surgery... doctors aren't really sure why the two seem to correlate), 2 diuretics, and 1 oil to add calories to her diet without adding too much volume. Pretty nuts! Some are given once a day, some with feedings, some three times... It's a lot to keep track of so that's why I made the check off. I also color coded the meds and the syringes that we use for them with stickers. I don't know if the color coding is super necessary, but hey, it may make it harder to make a mistake later.

Matt did a lot of the hands on stuff while I worked on the organization. He changed her, measured meds, asked for the meds and food when needed, etc. He was a busy guy! He seriously impresses me. And on top of all that, we had physical therapy and speech therapy today. Lots going on in Ella's little room.

It's been really weird/hard saying good bye to our nurses and doctors. Guys, I know I've said it a lot, but they are AMAZING. They have taken such good care of Ella. I have grown so attached to all of them. The one thing I keep telling myself so I'm not as sad is that we will see each other again whenever she has her next surgery. I am also really thankful for social media because we will be able to stay connected that way as well.

I have so much more to tell you all but for now I am going to go to sleep and try to wake up to relieve Matt in a few hours. 💜

Love,
Jillian

Monday!

So our schedule got changed a little due to trying to get certain equipment and medications home so we are on for Monday! It came almost like a relief because I'm able to get a few things done that I wanted to and I am able to say goodbye to the nurses. Matt and I have talked about that will be the hardest part about leaving! We have made such wonderful connections with the nurses and doctors and they have been such a blessing to us. We are so thankful for them.

Our 48 hour room in starts tomorrow afternoon and we are excited to show everyone what we've got! Haha!

Ella has been doing so well and continues to amaze us. I will keep you posted over the weekend! I'm also hoping to post pictures soon! She's gotten so big!

Going Home Soon!

Guys... We are actually going to get to go home!!! Our tentative date is this THURSDAY!!!

Ella has been rocking it this last week. We've had lots of appointments for physical therapy and speech therapy that have trained us how to help her development progress since she's been in a bed for so long. Physical therapy has been fun and has allowed us to get on the floor and snuggle and hold her in a bunch of different ways that will help her muscles develop. Eli has been able to "help" us with that as well. I can tell he enjoys being on the ground with her and playing with her.

Speech has been working with us to get her to eat by mouth. This part has been a much slower process than I anticipated... Ella has a sucking reflex that is good, but has a hard time swallowing. There are little things that we do with her are supposed to help her learn to eat by mouth. We are pretty much just giving her "tastes" of milk (which, by the way, she's been tolerating well!) by putting the milk on our finger and placing it near her mouth in hopes of her sucking our finger and swallowing the bit of milk she's receiving. She's done that a couple of times, but not all of the time. The speech therapist has been talking to us about the possibility of needing a G-tube (tube in her tummy) rather than an NG-tube (tube in her nose). There are a lot of positives and negatives to both so I asked if we could table that discussion for a couple of weeks. I know that Ella takes a while to do things that we would think she should be able to do, so I want to give her time to adjust and work on the feeding strategies each day.  We will meet with speech every week or every other week after we go home.

Ella has officially been off of the ventilator for over 72 hours now!!! The PICU doctor says he thinks that she will not have to be on it when we go home!!! We aren't completely sure yet, we are trialing it for 5 days, and if she does well, we will just go home with her HME (the little box thing covering her trach) and trach mist for night time. Dr. Swanson is also calling a pulmonologist (lung doctor) to get Ella a schedule for weaning off of her trach. He thinks she will be able to be without a trach at 6-8 months (so in 4-6 months). So that would be AWESOME! But of course, I am focusing on today and not banking on it haha!!!😊 The other information that is a little tricky with the trach that I hadn't realized before is that while driving we have to have two adults in the car so that, if needed, we would be able to suction her secretions that get caught in her trach. So I am really going to be confined to my house! The home nurse will be able to take care of her while I'm gone but we are supposed to get comfortable with him/her first.

The thing that may hold us up on discharge is the Lovinox (blood thinner) shots. Right now they are working on getting them for home, but the pharmacies that anyone can go to don't dilute it to the point that she needs. Ours would be much more concentrated, so it'd be a smaller volume of medication, and I guess having a different concentration would affect the release/absorption time. We have to figure this out before we leave. I asked if we can get the medication through the hospital but we can't as an outpatient. So that may delay our discharge date a bit.

The nurses have been working really hard to help prepare us to get home. They have been such a gift to us. I have told Matt how I will be sooo thankful to get home, but will miss seeing everyone that has loved on and taken care of Ella. Matt and I feel totally confident that we will be able to take care of all that Ella needs. The nurses and doctors feel the same, but we have to go through a 48 hour "room in" where we do all of the care, round the clock to prove we can do it. Matt and I have both felt confident in giving her the medications she needs (including shots), doing the trach care, and keeping track of the different things for her heart condition.

We got approved for home nursing and will get one shortly after we get home! We would love one for the night time so that we can sleep through the night, but it's hard to find a nurse for the night shifts. This means that Matt and I will be taking shifts on being awake at night to watch her. We have to do this because of the trach and making sure it doesn't get clogged. So if you see me, I may be a zombie for a while 😀.

The clots have not seemed to get better or worse. We are trying to figure out the meds as I've said, but the doctor is starting to wonder if they will even make any difference at this point... This complicates things a lot because now she will not be able to get the Glenn (second surgery), which would extend our risky time in the "interstage" until she is stable and large enough for the Fontan (third surgery) which I know I've explained before. I am praying that God does a miracle in her veins and gets rid of those clots. I pray that He will amaze the doctors and get rid of them in an inexplicable way that only He can do. The Glenn would normally take place when Ella is 3-6 months old. So please pray for that miracle along with us.

The reality of losing her has also set in a bit. If you look at her, you'd think she was a relatively normal baby (minus the trach/feeding tube), but she's not. She's special and needs a lot of special care.I started talking to our nurse about her reality and I saw tears welling up in her eyes, knowing that we are in for a difficult ride. Our lives of going to places daily and being around people are all going to change. She is so fragile in this "interstage" before the second surgery that if she gets even just a cold, she could die. I have talked to other parents of HLHS babies and the ones who had their baby pass away were the ones who had other complications, just like Ella does. So wrapping my mind around the fact that we may lose her has been a little difficult. The more we get to be with her and interact with her and do her care, the more and more my heart is attached to her and wants her to be with us forever, but I realize this may not be the case. Matt and I have discussed how we feel honored that God has asked us to be her parents because He knew we could do it with His help. So all I can say is that we are going to love her and take care of her as long as the Lord allows us to. I pray that technology gets better and better to help keep her heart strong. It's amazing the peace that the Lord has given us through this whole process. Would I ever wish it upon anyone else? NO. DEFINITELY NOT. It has been the hardest thing that I have ever experienced, but the beauty and blessings that have come from it have been incredible. I have seen my own and other people's faith strengthened because of what God is doing in Ella's life. I hope one day, when she is older, we will be able to tell her of all of the good things that came from her difficulties.

Love,
Jillian

Light at the End of the Long Tunnel

Hi everyone!

Ella has been doing really well with her sprints off the ventilator and the PICU doctor that is now on shift would like to switch things up again. She would like to get Ella's lungs strong enough to go most of the day without the ventilator and then allow her to rest on the ventilator at night while we sleep. It will be more like how we will be when we go home. And speaking of which... We have been told that we should be able to get discharged and go home within 2-3 weeks! Hallelujah!!!! We are trying not to get our hopes up but are so excited to see the light at the end of what's become this very long tunnel.

Ella is still receiving shots twice a day for her blood thinner. Matt administered one yesterday for the first time! Aaahhh! I am still too chicken to give her the shots, but I know I will have to soon. I laugh because a lot of my life I wanted to be a dentist, but once I found out I'd have to give shots, I decided that wasn't the career for me. And now look! I am going to be giving shots anyway. Haha! Funny how things like that happen.

Matt starts up work tomorrow for the first time since the day I got induced. It has been such a blessing that his work has allowed him so much time off. He is only going back two days a week until we get Ella home. He will have Eli with him and Eli will go with his grandparents while he's at work. Before driving the boys home today, I told Ella we'd have a couple of "girls' days", just her and I (and the nurses doctors, etc...). But I am excited and nervous to be alone with her. I feel like it'll be good bonding time for us. Just a mama and her girl 💜.

Recently we've had to figure out a lot of the insurance and state assistance stuff. It's pretty annoying and tedious but hopefully all the effort we've been putting in will enable us to get an at home nurse for the nights. Please pray that God prepares someone for us and that it won't feel weird to have someone in our home.

We can't wait to get our little one home and be together at last! Praising God for His provision over all of us over the last 2 months.

Love,
Jillian