Reality

Let me start off by saying that Ella is doing really well! We have a more methodical way of weaning her off of the ventilator so she doesn't tire and take steps back. Our PICU doctor has decided to sprint her twice a day for a certain amount of hours each time (right now we are at three hours) and we will go up an additional hour after each day that she is successful with both sprints (so if successful, we will go to four tomorrow). She's getting formula in chunks of 30 minutes now, so her body is starting to feel what it's like to be hungry and what normal feeding is like. The PICU doctor said her nutrition still needs to get better, so we are working on that. We were told that one week from this upcoming Wednesday we will try breast milk again (I jokingly say that I'm not holding my breath! Ella loves to throw us for a loop). We've noticed she has also got a bit of acid reflux and seems a little uncomfortable after her feeds. One of the nurses and I have noticed that Ella's random spells of low heart rates have been after a feed, so we are wondering if they are correlated. During the doctors' rounds today, I mentioned that and they said that, that could be it! So we are going to watch her a little closer after feeds now to see if that is indeed what may be going on. But all in all, we are getting closer! The clots and brain bleeds have not changed at all, but I was told it will take time. We get ultrasounds every Wednesday to monitor them. The wound nurses came in (they do every Monday, Wednesday, and Friday) and one said, "Praise the Lord! It's healing!" I looked at her and said, "Yes! We have been praying for that to go away!" It definitely looks disgusting still 😀 (are moms allowed to say something looks disgusting on her baby? haha!!!), but SO MUCH better.  So lots of good things are happening!

The reality of being in the hospital for so many days has started to get to me again. When Matt and I arrive at the hospital, we are often greeted by a set of parents or two getting discharged with their newborn in their arms. At first, we would look at each other and joke, "That'll be us some day!" But now that we've been in the hospital for 54 days, I look at the moms holding their tiny newborns and yearn to be them. I will never get to hold my "newborn" little girl in my arms and walk out of the hospital. Notice I put the word newborn in quotes because I have hope that we will some day get to take Ella out of the hospital, she just won't be a newborn any more. In 8 days Ella will be two months old and I can tell you that I honestly feel like I've been robbed of the newborn mess and chaos that most moms get, and that I got with Eli. I don't get to nap with my baby on my chest, I don't get to watch Eli hold his baby sister, I don't get to hear my baby cry, I don't get to hold my baby without asking for someone else's permission... I don't get a lot of the things that I, looking back, took for granted with Eli. When we get home, we will have to have a home nurse so that he/she can watch Ella while we are and she is sleeping since we cannot hear her cry at all due to the trach. So even having my baby sleep next to my bedside is not even an option. I wish I could go back to when Eli was a newborn and tell myself to enjoy it because I will (probably--you never know what God's plan is 😊) never get to experience that ever again. It's been a weird couple of days where I am mourning all of those things and just feeling a bit sad about our situation. 

When we found out we were having a girl, the first thing I bought her was a pack (or two... or three... or... ? 😁) of headbands. I LOVE it when little girls wear headbands and now when I see those headbands I longingly await the day that I can put them on her. Ella still hasn't even had the opportunity to wear any of the cute clothes that many of you gave to us. 

Recently, every time that I hear someone say to Ella, "I'm so sorry sweetheart," or something similar, I cringe. I just want to not have to apologize to her because we have to poke her or make her uncomfortable any more. I just want to hold her and make everything better, but at this time, I can't. BUT I know who can. God. And He can hold her and comfort her in a way that I never will be able to 💜. 

Matt and I are realizing how little we can relate to even the "heart mom/dad" community now because Ella's situation is so uncommon. I can't remember if I have mentioned this before, but I remember when we were first told that something was wrong with Ella's heart and their was possibly some sort of genetic issue with her, we just prayed that "it would just be a heart issue." We prayed for that because we thought it would be something similar to Eli's VSD, which never had to be operated on. Ha! Now we realize be careful what you pray for! 😁

Speaking of prayer, I just want to thank everyone who has been praying for her. We are so blessed by each of you. We cannot thank you enough. Many people have asked what they can do for us and we catch ourselves saying "just pray". JUST pray!? Doesn't that seem silly once you read that? Matt and I realized that that is the most important and most valuable thing that anyone can do for us! We, as humans, feel like we need to do something tangible for others when, really, praying for someone is the most amazing and helpful thing we can do. But, also, we are EXTREMELY thankful for all of the tangible things that we have received and know that God is using you to provide for us.

I know a lot of this may sound sad, but I can tell you one thing is for sure. God is good. He is good no matter what the circumstance. We are blessed beyond belief, even in this dark situation. I am holding on to the hope of one day being with Him and all "disabilities" and "defects" being something of the past. I pray that one day, Ella will be healed and relieved of the pain, but for now I am putting my hope in God and His plan for her. I know she has already touched so many people's lives and I can only imagine what else she may do in the future through Him who gives her strength. We joke around saying that Eli will go on to be a cardiac doctor and Ella will be an inspirational speaker. They will be quite the dynamic duo, we just know it!

Matt Turned 31!

Yesterday was Matt's 31st birthday! We normally go fishing on his birthday, but this year we celebrated birth in the hospital. A bit different than the previous years!!! It's crazy to reflect back on the last year alone... A lot has gone on in our family, both good and hard. We watched Eli grow up a TON, lost two of our uncles to cancer, found out we were pregnant, found out Ella would have a severe heart defect requiring 3 surgeries in the first few years of life, celebrated holidays, went to cousins' weddings, played in softball games, worked, and continued to grow in our faith. It was a year that we will never forget. We see how God prepared our family for what we would be going through this year. He has blessed us with jobs that have allowed us to be at the hospital every day, a child that is flexible and can handle all that he sees at the hospital, family and friends to support us, and faith and trust in Him to get us through all of the ups and downs with Ella. It's amazing how God has provided for us spiritually, emotionally and financially through the community around us.

Ella had a bit of a rough day yesterday. She needed to get an IV replaced because the one she had fell out. This is always an ordeal because she has such teeny veins that it's hard for the phlebotomists to get into a vein. It's hard not to just want to pick her up and comfort her while someone is poking her with needles over and over until one works... It often takes over an hour.

We were also told that we need to make more of a scheduled plan for Ella and our goal to get her off the ventilator. So we were back to only 2 hours off the vent twice a day yesterday. They will continue to bump it up an hour a sprint each day as long as her body tolerates it. The doctors found that the recovery from the 30 hour sprint (which was amazing) totally wore her out and almost made it like we had to take steps back. So now we are taking this slowly. It's hard not to question why we didn't start like this 2 weeks ago, but once again, we have the peace that God is sovereign over all and this is His plan. She did 3 hours today and has done well so far. It's so much easier to snuggle her when she's not hooked up to the vent. 😊

Ella's heart rate has also been a little weird. It drops down to the low 90s or high 80s randomly. They did a test for this and everything showed up normal so we have no idea why it has done that a couple times. The plastic surgeon came by last night and said he thinks her head will heal on it's own so that's good!!! It already looked better today. We are praying that it heals quickly because she shows us that it is super painful and cries whenever she's on it... (and so we can go home soon!)

On Wednesday we did another trach change where Matt held the trach and I changed it out. It felt like it took forever because Ella doesn't enjoy it very much so she cries a lot and it makes me so sad. I was so nervous to change it out that I was sweating and I was a little shaky. Thankfully, it wasn't too bad! We will definitely get better at it! I helped clean the trach straps today and once again she hated it, but settled down pretty quickly.

The doctors have asked to have her feeds "chunked". So she is now receiving food every three hours over a 45 minute time frame. This is going to get us closer to feeding her with a bottle. Speech therapy has been in to analyze her suck and it seems to be good. We have little assignments that we are supposed to do before each feeding.

Ella is also getting physical therapy to help loosen her muscles and get her moving like a "normal" newborn. We are supposed to do different movements with her but haven't been really consistent with them, so we will try to improve on that soon! The PT brought in a swing and chair to get her up and in different positions so she's not laying down all of the time. Her sternum precautions have been lifted so we can hold her in different positions too!

Ok. I think that about covers most things!!!

Thanks for all of your prayers for our family! Love to you all!

Love,
Jillian

Plateau

Hi everyone!

Not much has been going on so I took a break from blogging.

Ella has been doing well overall. She has been doing well with her sprints of being off the ventilator. She even did a 30 hour one! Isn't that amazing?? They tried to put her on the vent to give her a rest after 24 hours but she didnt respond well at all. We found out later this was due to some build up of gunk in her trach and it was making it difficult with the vent connected. So they let her keep going with it off until we noticed her body getting too tired. She is pretty worn out from it today though and did around 30 mins then showed us she needed to rest again. Dr. Falco (the PICU doctor) and I talked and wanted to give her a break for a little while and try again later this evening.

One of the big concerns right now is that wound on the back of her head. It seems as though the tissue surrounding the wound are showing that it may be larger than we think under the skin. Poor little thing, seriously can't catch a break. They are now bringing in a plastic surgeon to see what he thinks we can do. I know my job is to ask the nurses to make sure she is not lying on her back AT ALL at this point. Please pray that this will heal quickly or that the doctor will help us find a way to speed up the healing.

Yesterday Ella's A-line started to fall out and so there was quite a bit of blood all over her and her bedding. My mom got to the hospital earlier than we did and walked into room where the nurses were trying to take care of it. She said it was quite the scene. I'm sure it looked like something off of a hospital show or something. But she recovered well. Something I've learned after being in the hospital for this long is that I need to start giving blood on a regular occasion. I won't be able to until Ella is not nursing anymore (which due to the cylothorax she is still not getting breast milk, but hopefully she will soon! Our freezer and my parents' deep freezer are getting full!) but she had had at least 8 half bags of blood (4 adult sized donation bags) and that's just one little girl! It is pretty amazing the difference we see in her after receiving it as well... Her coloring looks better, she's less lethargic... so I am hoping to donate blood as soon as I'm done pumping for this little one! It really does save lives!

Up until a couple days ago, Ella's been getting feeds through her NG tube (nose tube) constantly. They are now giving her the same amount but in chunks so she gets to feel what it's like to be hungry and to get on a feeding schedule. This will help us get to the point where we feed her through a bottle eventually. We also had a consult with the speech therapist and she said there is a (small) chance I will be able to nurse her at some point, even if it's just once a day. We have to fortify (add calories to) my milk for her because she will burn calories much faster than a normal-hearted baby, so that's one of the reasons nursing is difficult with heart defected babies.

So all in all, I think we have been at a steady uphill since the trach but are at a plateau for now. Once this wound heals and she starts to do more time off the vent we will be sitting pretty 😁. Ha!  But as always, God is so good and loves Ella so much.

Love,
Jillian

"We Have A Surprise For You!"

This post will be short and sweet, but we have had some awesome things happening so I wanted to share!

We walked down the hall in the PICU and were greeted by the respiratory therapist saying, "We have a surprise for you!" We walked into Ella's room and she was OFF THE VENTILATOR! They are doing sprints again, similar to when she was extubated, but she has been doing so well that today they wanted to do a 6 hour sprint! This time was different than other times because they had her completely disconnected from the ventilator. She was hooked up to a tube that just keeps her airway humid. They are hoping to be able to do a 12 or so hour one next then see how she does then 24 hour sprint and then she may not have to go back on the ventilator! How awesome is that?! We were so excited. God just keeps showing us that His plan with the trach was (of course!) right way to go.

The other good news we got was that she would get her chest tube out today. While we held her, it was so much easier to move a little because we weren't so worried about that tube. We were also told that they were upping her feeds (1 ml an hour 😆, but hey! it's something!). With more nutrition she'll be able to heal quicker and better.

The clots are still a concern and we continue to pray God takes them away miraculously.

We have been encouraged to hold her more and more so the wound on the back of her head heals quicker. I definitely won't argue with that! 😁

Please continue to pray for those clots to go away and for her to grow more and more healthy. We would also love prayer for Eli during this time. He has been such a trooper. We are so thankful for the family that has been taking care of him. But we miss him a ton!

Love,
Jillian

LOTS of Pictures and a Video!

LOTS OF PICTURES FROM THE LAST FEW DAYS!!!

The best big brother ever!

A little smile

Cool dude!

See? Even the nurses think he's cool! They love Ella!

Brother and grandparents loving on Ella girl

Giving Ella her pacifier

Matt holding his sweet baby girl for the first time 

BIG yawn

Check out her sweet hair do

Holding Ella for the third day in a row!

Mother's Day family photo. Eli is SUPER stoked. 😉

Mother's Day

Happy Mother's Day (a day late)! Our Mother's Day was one for the books!

After getting spoiled by Matt and Eli, we arrived at the hospital to see our Ella girl. Dr. Swanson (the PICU doctor) came in to fill us in on the goals for the day. He was hoping to do a couple of things with her medications and he wanted us to HOLD HER!!! What?! We were so surprised!!! We thought we weren't supposed to hold her while she has the chest tubes in, but Dr. Swanson wanted to make it happen. He told us it should help the wound on the back of her head heal as well.

So...

After 38 days Matt finally got to hold his baby girl. 💗It was the sweetest! Our parents and Matt's grandma came down and there wasn't a dry eye (other than Eli's) in the room when the nurses handed Ella to Matt. It was a moment that I will never forget. After his turn holding Ella, I was able to hold her too. I ended up holding her for a couple of hours and I had no idea I held her for that long!!! The time flew by as I watched Ella sleep in my arms. I looked at her sweet face and little body, trying to take it all in and praising God for her life. I was surprised at how comfortable I felt holding her even though she was hooked up to so many different lines--especially the chest tube and ventilator tubes.

Ella had her anti-coagulation medicine switched to Lovinox so that she doesn't need as frequent of blood draws as she did with the Heparin. I explained in the previous post that this is risky because we can't just shut it off if we notice the brain bleed getting worse. It stays in her system for about 12 hours after it is given. The nurses and doctor kept getting really wonky numbers during the blood draws and tried to get a phlebotomist to come get a clean blood draw with a needle rather than through a line that she has in place already. The phlebotomist wasn't able to get enough blood because she's so tiny, as are her vessels, so the doctor decided to pause the Lovinox until they could get an accurate reading. We prayed that God would help the nurses and doctors get a good draw for her and they were able to today so they are adjusting her meds to get the exact amount that she will need to help with those clots. Please, please continue to pray these clots go away. They are disrupting a ton of progress for Ella.

Today was one of my favorite days of Ella's life so far. Eli went back to Grass Valley today so we were alone with Ella for the afternoon/evening. I got to hold Ella again today and she was awake the whole time!!! We had doctors and social workers come by her room and "ooo" and "ah" over the fact that we got to hold her. Ella has become very popular in the PICU. Some nurses have said that they have become really attached to her. It's so sweet to have everyone love our baby girl. We have been on the PICU floor the longest of anyone there now.

Back to when I was holding her... Ella was so alert, looking around at everything and examining our faces. Matt read books to her too using funny voices for each character. Once she needed to be put back into her bed, we stood at her side for a long time again and just watched her little face look around and take everything in. We were told by nurses that we would see this sense of relief once she got the trach and that was so evident to us today. She seemed so happy. We realized that she had been awake for at least four hours straight! Before the trach, we never saw her awake for that long in an entire week or two combined, so it was so fun to talk with her and make funny faces at her.

Ella has been doing so well breathing with her trach and was able to be taken down on the ventilator support a lot. They took a blood sample for her blood gas numbers again this evening and Dr. Falco said they are better than he's ever seen them, the respiratory nurse even called them "beautiful". I am praying that we won't have to bring a ventilator home with us and that she will be able to breathe through the trach on her own soon!

I will be posting another blog post with a bunch of pictures soon!

Love,
Jillian

Our Unique Girl

Hi Everyone!

So sorry for the delay in the post, but overall we've had some good days!

Ella got her trach put in on Wednesday and seems to be so much more comfortable. It is such a huge blessing getting to see her cute little face without the big "white mustache" of tape on it. She has been able to be much more alert and interact with us. It has been really sweet to see. Her surgeon said there didn't seem to be any issue with her anatomy so he would hope she can get weaned off of the trach. We've been told that she may have the trach for any amount of time from 3 months to 3 years or more.

We started our home care "classes" as well. The nurse that is head of cardiac education, Cindy, will be teaching us about everything that we need to do in the "interstage". The interstage is the time between the first 2 surgeries. This is the time that is most risky with HLHS babies. There are things that can happen to the shunt that would result in losing her. We will have to closely monitor her fluid intake/ouput and oxygen levels along with other things. It seems like a lot right now, but all of the nurses have ensured us that we will be totally fine because we've been so involved so far. I'm definitely not shy and ask a ton of questions (shocker, I know! 😉). Cindy gave us a binder with different things we have to record and memorize before going home. We will later stay in the hospital room for 48 hours straight (no leaving at all) for the nurses to make sure we know what we are doing before they discharge us.

Cindy also informed us that Ella is even more unique than we thought... THEY HAVE NEVER HAD A SINGLE VENTRICAL BABY WITH A TRACH! She has worked here 30+ years and hasn't seen one. Lucky girl, huh? 😆 I am sure that Ella will be one of those walking miracles that defies all odds. Cindy told us that there is a lot to learn with a baby with HLHS (the most severe/complicated heart defect), and now that we have trach, we've got even more!

The blood clots are our major concern right now. When Dr. Hill went in during the cath and he found the clots are all along her neck and down to her heart. So they are much bigger than we anticipated. 😕 these vessels are used to connect blood flow to her lungs in the second surgery.  If these clots don't go away she won't be able to have the second surgery... if that happens then we are prolonging the risky interstage... Please pray for a miracle with them. We don't want to go in and remove them because there's a big risk that a part of it would get dislodged and go to her brain causing damage. We haven't been able to be as aggressive with the anticoagulation medication because of the brain bleed from a while ago. So we have been asking God to give us a miracle with these, just as He did with the pacemaker. We switched her anticoagulation medication to another longer acting one. This is a little risky because of the brain bleed.

Ella also has a wound on the back of her head that has been there for a while. It went away and then it came back a couple of days ago with a vengeance and opened. So we are hoping that will go away soon as well.

Some really great signs of progress are that Ella now shares a nurse with another patient and we no longer hear the beeping that kept track of her heart rate and SAT levels.

Eli has been more interactive with Ella and loves to stroke her head and hold her hand. It is so sweet. He's the best big brother. 💙

Love,
Jillian

To Trach

Hi all,

So today Ella went in for a heart cath. This is a procedure where Dr. Hill (the cardiologist) put a catheter in an artery through her left thigh and he measured the pressures in her veins and heart. He wanted to do this to make sure that we weren't missing anything that would explain why Ella hasn't been able to get extubated.

Dr. Hill came to see us after the procedure and informed us (and the PICU doctor and Dr. Watanabe) that the clots in Ella's neck are worse than we thought. They are not allowing blood to get through so her body is opening up other vessels to compensate which allows blood to go from her heart to her head. To the best of our knowledge, these clots seem to be the main issue for Ella's inability to get extubated. They are not allowing the swelling to go down in her face which may be obstructing her airways. Before the procedure, Dr. Hill was leaning towards extubating Ella one more time, but after seeing her clots he was leaning more towards getting her a tracheotomy.

So after talking with the PICU doctor, Dr. Hill, and Dr. Watanabe, we have decided to have Ella get a trach. Honestly, I was pretty devastated. I couldn't believe that this is what we needed to do for Ella. I tried to hold back tears while talking with the doctors. Matt and I left the hospital a little while after making our decision. I just wanted to get out of that hospital room. We got in the car and I immediately broke down crying. I thought to myself, could this really be our life now? As if parenting wasn't hard enough, we've been given an even harder situation than many. Matt started driving and neither one of us knew where we were going. Finally we got close to the state capital building and decided to go to the rose garden. It was like God knew we needed to be around the beauty He has created to allow us to process this new information. After walking around and smelling the roses, I felt God's comfort and peace about our decision.

We got back to the hospital and talked with our nurse, one of our social workers, and our Child Life social worker.  Each had a different perspective and information about tracheotomies, each being really positive and helpful. I saw a picture of a child with a tracheotomy and it wasn't at all what I pictured. It was a lot less scary looking. We learned that, most likely, Ella's trach won't be permanent. She will have it for any time between a few months to a couple years. Of course, I'm pulling for a few months 😀. We will have to have an at-home nurse that will help us care for Ella and her new "accessory". We aren't sure exactly what that will look like but will learn soon. The care for Ella has gotten a bit more complicated now, but we will be up for the challenge. Please pray for us to absorb as much information about how to best care for her while we are at the hospital. Ella will most likely not need to be sedated any more once her surgery is over and she will be able to start the healing process. We will start to focus on getting her strong and healthy so that we can get her home. We should also be able to get to snuggle and hold our baby girl (finally!) in a week or so. It's so weird having Ella for over a month now and not having held her for more than 2 minutes or not at all (for Matt). Something that I guess I took for granted with Eli. It's funny how you start to realize how special the little things are...

Now here's another problem that the clots have created... If those clots don't disappear on their own soon, Ella will not be able to get the second surgery, the Glenn, as we planned. This is the second open heart surgery of the three that she will need, but they need these arteries to be clear in order for them to perform this surgery. The period between the first and second surgeries is risky for HLHS babies. They are really fragile and their bodies cannot handle what normal babies' bodies can. So what I'm not sure of is if we are unable to do this second surgery, does this risky time period get extended? Dr. Watanabe and Dr. Hill talked about alternatives to the Glenn and we aren't totally clear on what it would look like, but we are just praying that God will remove those clots from her little body. The fact that they are so unusual is really annoying to me. It's just one more thing that Ella's body has to deal with. It angers me and concerns me, but I have found such comfort in knowing that God loves her more than we ever could and He is the ultimate healer.

Ella's surgery for the tracheotomy will take place tomorrow sometime around 1 in the afternoon and should last around 45 minutes or so. Please pray that she will be more comfortable once she gets off the breathing tube and that her body starts to heal. Please also pray for the hands of the surgeon.

Thank you for praying that God would give us wisdom. We asked him for clarity and it was pretty apparent what we needed to do. Even though it wasn't what I wanted to do, I am so thankful that God made it so clear to us what Ella needs.

Love,
Matt and Jillian

To Trach or Not to Trach... That is the Question.

Hi everyone,

Where to start...

The last few days have been stable but hard. Since being extubated and reintubated Ella has been pretty stable. There have been a few hiccups with differing numbers and having to go up and down on medications but overall she's doing well.

That being said, Matt and I have a major decision to make regarding the tracheotomy. We have an appt for a tracheotomy surgery on Wednesday. But we have a lot to think about... do we have a trach put in or wait and see if she can build up enough strength to be extubated? Both have pros and cons, which is why it's been so hard for us to decide. Being intubated for so long has made Ella's lungs weaker since they've been able to depend on the ventilator. Some doctors think we should not even try to extubate a third time, but others think we should give it a try. Now here's where it gets complicated... if we decide not to extubate and to give her a trach, she wouldn't need the sedation that she's needed while on the ventilator, she would be able to be held and start growing like a normal baby, we would get out of the hospital sooner but would need a home nurse for a while that would be there 16 or so hours a day, and she wouldn't necessarily need it permanently (probably for about 2-3 years). If we decide to try to extubate again and fail, we will have to wait two weeks to get her the trach because the surgeon that does the infant trachs is going on vacation. Ideally we would extubate and she would do well, but we aren't even sure if that will happen... So lots of praying has been going on here!

Dr. Hill, one of the cardiologists, wants to do a heart cath tomorrow morning to see if there's something we are missing. He will be scoping through an artery in her leg up into her heart and lungs. He will be checking the pressures and making sure things look right. He talked to us about possibly going up into the jugular arteries where the clots are and trying to move them out, but he said that the risk of them going to the brain outweighs the possible benefits. We really need these clots to go away though because they will make it impossible for the next surgery to happen... Dr. Hill isn't sure if these clots are what's inhibiting Ella from being able to get extubated. It's really interesting because the clots formed and caused the brain bleed (we believe) but the clots won't go away because they aren't able to give her the heavier meds due to the brain bleed. It's a vicious cycle! And of course the doctors have told us that it's very unusual for clots to form there... poor little Ella, nothing seems to be easy for her.

We had a chaplain come in and talk to us today. He was really kind and read us a psalm and prayed over us. He lost his daughter to cancer when she was 5, so he knows the sorrow that comes in a hospital far more than we do.

Please pray for wisdom with what we should do with the trach decision. We have until tomorrow night to decide.
Pray for Ella to stay calm and comfortable because the last couple of days she has seemed really bothered by something and "crying" (without sound of course) a lot (maybe that'll help strengthen her lungs? Who knows...)
Pray the blood clots will go away.

We know God is the ultimate healer and can do miracles that surpass our expectations and we pray that He will do that with our little "Ella girl". As always, we continue to pray for His will and for us to accept whatever that may be.

Love,
Jillian

Humbling

Hi everyone,

We took a couple of days off of blogging but there has been a lot that has gone on. We were told that Ella was making great progress and would get extubated on Thursday but after 5 hours of being off the ventilator, Ella was struggling to breathe and her heart rate started to drop. Her lactate numbers had also told the nurses and doctors that her body was in stress. Ideally this number would be a 1 and hers got up to a 16... So the doctors and nurses decided it was time to reintubate. I was so discouraged. I went and sat in the quiet room down the hall and cried. I was wondering why the Lord would have her keep going through this... Then a man entered the room talking on his phone. I overheard him and he was explaining how his son had an ear infection and was on antibiotics. He then got a high fever so they brought him to the hospital and they told them that he had meningitis. I got a little confused at this part, but somehow his heart rate rose to over 200 and something else happened. The doctors then had to tell the parents that their son was essentially brain dead. The dad continued to say how he doesn't know how he will go home and tell his other son... I couldn't believe it. I sat there crying and praying for him and realizing that I still have my daughter and my situation could be much worse. God was helping me put things into perspective. Please pray for that family. I couldn't imagine going into the hospital with a son that has a fever then going home without him... Pray for a miracle for that little boy.

Yesterday seemed like a perfect storm. I was totally humbled as a mom and here's why... We planned to take Eli to get "THE best cinnamon rolls" (according to reviews) and to the Sacramento Zoo. Eli has always loved the zoo, so we thought that would be special... guess again! HAHA! The cinnamon rolls were a bit of a let down and Eli hated most of the zoo. For some reason this time he decided he didn't like animals, and three months ago he loved them. So I felt like a total failure. I planned on blowing up balloons and scattering them around our room at the Ronald McDonald House that morning, but I forgot to get balloons... I had also wrapped his birthday presents in a reusable bag from the back of our car and used paper towels as tissue paper. 🙈 This was NOT what I wanted for Eli's birthday. I wanted to make him feel special and celebrated, but by 10am I had already failed.

After the zoo, we went to the hospital and had lunch while we watched Ella struggle to keep breathing. This is where the story starts to change for Eli's birthday... While there, the nurses made a huge deal about Eli's birthday and our doctor actually shares the same birthday so he was "Ooo"-ed and "Aahh"-ed over a lot. Our Child Life social worker (the one who pays attention to how Eli is doing and tries to make things a little easier on our family and Ella), Sarah, brought Eli a huge bag of gifts and another box. The bag was a birthday pillowcase that contained a cute stuffed bulldog, hot wheel cars, a hot wheel track (which he is OBSESSED with), a playdoh set, and the mess free markers and coloring book. Isn't that amazing? We were so blessed by the gifts and couldn't believe that he was gifted so many and such perfect things. We then opened the box and it was full of party supplies to help decorate and celebrate his birthday (which I had failed on earlier), birthday cards made by kids, and many other little things. I started to cry at this point. God was using the hospital to help celebrate my son's birthday and I've been so busy there that I didn't have time to get all of those things. I was so thankful and humbled at the same time. Even though this hospital stay has been difficult, there are some memories that I cherish and would never change, this being one of them. Things looked up for Eli's birthday celebrations after this and all four of his grandparents came to help him celebrate that evening too.

Ella is still intubated, they're hoping to extubate one more time and if she doesn't do well then we are on for the tracheotomy. I still have hope that Ella can gain the strength she needs to breathe on her own, but the odds aren't really on her side. This is where I keep reminding myself of the pace maker and how the odds were against her there too. I know that God uses our weaknesses to show his power, strength, and glory, and I'm praying that He will do this through the healing of Ella's lungs. Please pray that God gives her little lungs strength and the ability to breathe on her own. The next couple of days are going to be crucial in her progress.

Thanks for all of your prayers, we totally feel them!

Love,
Jillian

Slowly, But Surely Making Progress + PHOTOS!

Hi everyone,

Today was another pretty good day! Ella was alert so we got to interact with her a lot more again. The nurse that we have for today and tomorrow hadn't seen her since Thursday and she was so excited about how much less swollen she is. Ella has been on the heparin and seems to be doing well with it. We are anxious for those blood clots to go away and are praying that this medication will help do that without effecting the bleed in her head.

We have a different doctor on shift now (he came on yesterday) and I really like him. He was the doctor on shift when Ella was admitted to the PICU. He is really positive and optimistic. He wants to push Ella more to get her breathing on her own. Today he had her on a schedule with a goal to take her reliance on the ventilator down from a 30 to a 10. I know that probably doesn't make any sense to you, but know that it's a good thing!! When we left this evening, she was down to a 16 and they will continue to take her down overnight if she does well with it. If she keeps it up, it looks as if she will be able to get extubated relatively soon (within a couple days). She will then be put on the CPAP "bubble" machine again and then will transition to the high flow machine then will be off everything. I cannot wait for the day when she won't have so much on her cute little face.

I didn't realize this, but Dr. Watanabe got Ella's A-line in last night in ONE TRY!!! What a champ! He was REALLY excited about it and was telling everyone. Ella has so many scabs from where the previous doctors tried to get a line in but failed. I was so thankful she didn't have to go through more than one more poke! Yippee! This is to help monitor her blood pressure and to get blood draws to test her oxygen levels and levels of many other things. So we are thrilled it worked!

As we have said before, Ella is getting really skinny. We switched her socks today and none of the newborn socks stay on because her little calves are too small. They have upped her nutrition quite a bit and we can tell it's been helping her heal much better. We are continuing to pray that the Lord allows Ella's body to respond to the formula that she has to be on due to the chylothorax. Apparently there's a small chance that her body won't like that either and she would have to be taken off of it... So please pray along with us in that!

A lot of people have asked us how we are doing and we have been telling them that we are doing pretty well, and we aren't lying. Of course, we would never have chosen this path, but we know that God has been giving us the strength and peace throughout this whole experience. We have been told by the nurses that we are so "calm" and we can only say that it is not because of us, it's totally God's grace upon us. There are definitely days that are easier than others but overall, we have been doing well. We are so thankful for all of your prayers and support.

Side note: On Saturday, our weekend nurse came up to me and told me that she was listening to a song on K Love (I didn't realize she was a Christian at the time) and she felt like the Lord had put a song on her heart to share with us. It is called He Said, by Group 1 Crew. If you have listened to K Love, you've probably heard it. Here's the link: https://www.youtube.com/watch?v=Lmi9IBP209s. I felt so thankful that we have had so many Christians caring for our baby. It's awesome to know that they are praying for her too. 💜

Here are some more recent photos of Ella girl: (Check out the swelling in her face difference from the picture with Eli on Saturday to the bottom one today (Tuesday)... big difference!)

Daddy reading the Bible to Ella 

Eli giving his sister kisses.

Changing Ella's bed. It takes a lot!!!

Ella looking at her daddy.

Ella's eyes!
That dot on her head is marker from the nurses to make sure they're measuring her head at the same spots.

Holding Mommy's hand.

In cozy, cute blankets

Sweet girl.