I'm in a little bit better of a mindset right now, so I wanted to share how amazing God's timing is and all the good that has been in this horrible situation.
So this morning Matt and I got the call when we were both still asleep (not until 7:36!) so we were really rested for the crazy day ahead.
We were able to talk to the anesthesiologist about how God has been working through this situation and we found out he is a believer too! It's amazing how God brings His people together! He told us that God is being glorified through our family.
When Ella started to "code", it was right during shift change. This meant that all of the night AND day shift nurses were there to respond. Dr. Hill (cardiologist), Dr. Nasirof, and Ashley were all there to respond. There is another baby that is on ECMO a couple of rooms down and she was supposed to be getting off ECMO this morning (but is not quite ready), so the entire operating team was already there ready to step in alongside the ECMO team people as well. They did compressions in hope of not needing to use the ECMO, but weren't successful, so they were able to put her on the ECMO in 45 minutes because everyone that they usually can't get immediately was there. We were told it can often take 2 hours.
We were able to connect and talk with the other family with their baby on the ECMO. They are Spanish speaking only so we haven't been able to really talk with them about everything that's going on. We realized how much Spanish we've forgotten. But (thank you Google Translator) we were able to share how sad we are for each other and share in the struggles we've been dealing with.
Eli was with the Ettlins and I was getting photos of fun things they were doing. Eli has been struggling not having us at home, so it was sweet for us to see him having a blast with his girls.
Ella is stable on the ECMO and there looks to be little to no impact on her brain from all of the trauma. (We will find out for sure later) She is so sedated that she is not really experiencing all that is going on (praise God).
Finally, both sets of our parents were able to be with us today. We are so fortunate to have such an amazing support system.
See? Lots of good things in such a bad day.
Also, lots of people have been commenting on how strong we are. We can honestly say that it is not us. We have been lifted up by your prayers and God has given us the strength, perseverance, and even joy throughout this entire experience. We prayed that we could see suffering as a gift before Ella was born and it seemed like such an oxymoron at the time, but we really have seen such amazing things come from the suffering.
That's all for tonight.
Love,
Jillian
Tuesday, July 31, 2018
ECMO...
We got another call...
This morning at 7:36 we got woken up by a call saying, "Ella has coded and she is now about to be put on ECMO. Will you guys be able to get here soon?" We quickly got up and went to the hospital. We entered and Dr. Hill and Stacey (the director of Pediatrics) pulled us aside and explained that Ella's blood pressure started to tank and they did compressions for a half hour as well as giving epinephrine and then decided to put her on the ECMO machine. ECMO is essentially a life support bypass machine. When we learned about ECMO before Ella's first surgery, we were told just hope she doesn't have to go on it. Statistics show that only 50% of children that have to go on ECMO live. This is why we prayed that she wouldn't have to go on it... But here we are.
We have talked to a LOT of people today, doctors, nurses, surgeons, respiratory therapists, assistants, anesthesiologists, custodians, and child life personnel, all of whom have expressed that they are so upset about Ella's condition. Everyone loves Ella so much that it brings me to tears. She has made such an impact on the lives around her just by being herself. She is truly a gift.
The floor seemed a little more somber today because of Ella's condition. I do not know how these people do what they do. They are seriously amazing. I could not do their job. They see some really scary things and have to be in stressful situations that many people never understand. I am so thankful that they sacrifice themselves to help save our baby and others like her.
We keep wondering if God wants to demonstrate to people around Ella that He is the ultimate healer and show people that we can plan on certain things, but He is the only One in control. We don't know why this is part of Ella's story, but we know that He will be, and already has been, glorified through her little life. We continue to pray that we can be a light to the people around us and that God will use us in some way to further His kingdom. I keep praying that if God wants to take her that He takes her soon so that she doesn't have to suffer any more.
This has been by far the hardest thing that we have ever had to endure. Tomorrow marks 100 days in the hospital (we had 18 at home). It has been a long 100 days. It is starting to really wear on all of us, so we are praying for refreshment and continued endurance.
Please pray that Ella will continue to be stable on ECMO and that we will be given the wisdom as to what we do from here.
Love,
Jillian
This morning at 7:36 we got woken up by a call saying, "Ella has coded and she is now about to be put on ECMO. Will you guys be able to get here soon?" We quickly got up and went to the hospital. We entered and Dr. Hill and Stacey (the director of Pediatrics) pulled us aside and explained that Ella's blood pressure started to tank and they did compressions for a half hour as well as giving epinephrine and then decided to put her on the ECMO machine. ECMO is essentially a life support bypass machine. When we learned about ECMO before Ella's first surgery, we were told just hope she doesn't have to go on it. Statistics show that only 50% of children that have to go on ECMO live. This is why we prayed that she wouldn't have to go on it... But here we are.
We have talked to a LOT of people today, doctors, nurses, surgeons, respiratory therapists, assistants, anesthesiologists, custodians, and child life personnel, all of whom have expressed that they are so upset about Ella's condition. Everyone loves Ella so much that it brings me to tears. She has made such an impact on the lives around her just by being herself. She is truly a gift.
The floor seemed a little more somber today because of Ella's condition. I do not know how these people do what they do. They are seriously amazing. I could not do their job. They see some really scary things and have to be in stressful situations that many people never understand. I am so thankful that they sacrifice themselves to help save our baby and others like her.
We keep wondering if God wants to demonstrate to people around Ella that He is the ultimate healer and show people that we can plan on certain things, but He is the only One in control. We don't know why this is part of Ella's story, but we know that He will be, and already has been, glorified through her little life. We continue to pray that we can be a light to the people around us and that God will use us in some way to further His kingdom. I keep praying that if God wants to take her that He takes her soon so that she doesn't have to suffer any more.
This has been by far the hardest thing that we have ever had to endure. Tomorrow marks 100 days in the hospital (we had 18 at home). It has been a long 100 days. It is starting to really wear on all of us, so we are praying for refreshment and continued endurance.
Please pray that Ella will continue to be stable on ECMO and that we will be given the wisdom as to what we do from here.
Love,
Jillian
Monday, July 30, 2018
Surgery Updates
We took Ella down the long hallway to the operating room at 7:30 this morning.
9:30 they were able to get her IVs and Arterial lines in.
10:30 they were just opening her chest
11:30 her chest was open and they are about to begin heart surgery
12:50 the doctors are continuing the repair, she's on bypass, going well
3:55 the nurses will be retrieving Ella in 10 mins!!!
4:30 just met with our cardiologist, Dr. Hill, and he is pleased with how the surgery went! Her left pulmonary artery was narrowed and they were able to repair it. They inserted a 4 mm BT shunt and kept her Sano shunt there. They were also able to repair the aortic arch. BIG NEWS they were able to close her chest! We are awaiting her arrival!
5:00 Ella is back to her room! Somehow we missed the parade, but the surgeons seem to be happy with the outcome! We are waiting to be able to go in and see her!
6:00 We saw Ella! She looks good, definitely has the post-op puff, but everyone seems happy with the results of the surgery. We aren't really encouraged to hang around her room because there's a lot going on in there, but they're happy to have us stand out of the way 😁
Here are some pictures!
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| On our way down the loooong hallway to the operating room. Hardest walks of our lives... This was the 6th one Ella's been on. |
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| Here's what Ella had done. |
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| We love our nurses so much! They love Ella so well! |
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| Everyone around Ella's room. |
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| Post-op Ella girl on her giant bed! |
Sunday, July 29, 2018
Round 2
Hi all!
I went home Thursday to get a bit of relief from the hospital. It was weird though, as much as I am OVER being in the hospital, I was more anxious while not there with Ella. Once I came back to the hospital and settled in again I felt this sense of relief. It's a hard balance because I get antsy while in the hospital room, but I also get antsy when I'm not with her.
There is a lot that has been happening...
Ella is scheduled to get another open heart surgery on Monday (tomorrow) at 7:30am. The doctors will be repairing the arch in her aortic valve and putting in a larger shunt to allow there to be more time between now and the next surgery. They said it may take all day because of the complexity. I asked Dr. Nasirof if Ella was his daughter, would he do this surgery or just enjoy her while she is here, and he said that she has been such a fighter that she definitely deserves another chance. I completely agree with him. I knew he would tell me the truth too. I am thankful that I am able to have such honest conversations with all of the doctors and nurses here. Dr. Watanabe and Dr. Nasirof a will be working together alongside another doctor from Stanford, Dr. Reinhartz, and will be supported by Ashley. This surgery seems to be as complex and risky as the Norwood procedure she's already had, but she will be in good hands! They said that they may leave her chest open for a day or two post op, but hope not to. She has a high risk of getting chylothorax, the fat leak in her chest, and may have to go on the non-fat formula again... I've decided to stop pumping because it's an added stressor, but we have a ton of milk stored up from when I was a pumping machine. 😊
If all goes well, Dr. Watanabe said there's a chance that we could go home after a week. I started laughing when he said that because Ella takes longer than most to get it all together. My hope is two weeks, but realistically it's a month, possibly more.
We know the reality of this surgery is really risky and there's a 5-10% chance that Ella may not make it. If she does leave us, I keep praying that it is in a calm and non-traumatic way. I know God has an amazing plan for her and she has already impacted a ton of people in her short life. I am praying that this surgery is just what Ella needs to get strong and that we can work on getting the trach out shortly afterward. Funny story, we saw some friends recently and one of the daughters asked Eli how Ella was doing and he replied, "Everybody wants to get the trach out," and nodded his head shrugging. HA! He knows us so well 😀. It's amazing how much of this situation he really does understand. He has been such a trooper through it all.
I started to look through photos of life since Ella was born so I could get some printed out for our house. I have been putting this task off as long as possible because it meant that I'd have to relive it all again. It was really hard looking at the photos of her while intubated, with her chest open, and hooked up to a million lines, but the hardest was looking at the photos of her before surgery. She looked so normal and sweet that you'd have no idea that she was so sick. There was a pang in my heart when I saw her little chest with no incision on it and I knew she's had to endure a lot since those photos, but once I saw them all over again, I was reminded of just how much. She is truly a laying miracle (because she doesn't walk yet 😁, otherwise she'd be a walking miracle).
Staying the night in the hospital has been really interesting. We got into the Ronald McDonald House again last night, but the previous nights I was staying with Ella. The PICU is a really intense place. These nurses and doctors have to deal with so many things that many people don't realize... One night, I was woken up by a nurse telling me there was an emergency and asked if I could watch Ella for a bit. I, of course, responded with a yes, and instantly my mind went back to the night that we received the call when Ella's "status had changed". It's something that I wish no parent would have to experience. I started tearing up and prayed for the parents of the child who's life was at risk. I hope that I won't have to receive another one of those calls ever again.
Big day tomorrow. I'll keep you all posted.
Love,
Jillian
I went home Thursday to get a bit of relief from the hospital. It was weird though, as much as I am OVER being in the hospital, I was more anxious while not there with Ella. Once I came back to the hospital and settled in again I felt this sense of relief. It's a hard balance because I get antsy while in the hospital room, but I also get antsy when I'm not with her.
There is a lot that has been happening...
Ella is scheduled to get another open heart surgery on Monday (tomorrow) at 7:30am. The doctors will be repairing the arch in her aortic valve and putting in a larger shunt to allow there to be more time between now and the next surgery. They said it may take all day because of the complexity. I asked Dr. Nasirof if Ella was his daughter, would he do this surgery or just enjoy her while she is here, and he said that she has been such a fighter that she definitely deserves another chance. I completely agree with him. I knew he would tell me the truth too. I am thankful that I am able to have such honest conversations with all of the doctors and nurses here. Dr. Watanabe and Dr. Nasirof a will be working together alongside another doctor from Stanford, Dr. Reinhartz, and will be supported by Ashley. This surgery seems to be as complex and risky as the Norwood procedure she's already had, but she will be in good hands! They said that they may leave her chest open for a day or two post op, but hope not to. She has a high risk of getting chylothorax, the fat leak in her chest, and may have to go on the non-fat formula again... I've decided to stop pumping because it's an added stressor, but we have a ton of milk stored up from when I was a pumping machine. 😊
If all goes well, Dr. Watanabe said there's a chance that we could go home after a week. I started laughing when he said that because Ella takes longer than most to get it all together. My hope is two weeks, but realistically it's a month, possibly more.
We know the reality of this surgery is really risky and there's a 5-10% chance that Ella may not make it. If she does leave us, I keep praying that it is in a calm and non-traumatic way. I know God has an amazing plan for her and she has already impacted a ton of people in her short life. I am praying that this surgery is just what Ella needs to get strong and that we can work on getting the trach out shortly afterward. Funny story, we saw some friends recently and one of the daughters asked Eli how Ella was doing and he replied, "Everybody wants to get the trach out," and nodded his head shrugging. HA! He knows us so well 😀. It's amazing how much of this situation he really does understand. He has been such a trooper through it all.
I started to look through photos of life since Ella was born so I could get some printed out for our house. I have been putting this task off as long as possible because it meant that I'd have to relive it all again. It was really hard looking at the photos of her while intubated, with her chest open, and hooked up to a million lines, but the hardest was looking at the photos of her before surgery. She looked so normal and sweet that you'd have no idea that she was so sick. There was a pang in my heart when I saw her little chest with no incision on it and I knew she's had to endure a lot since those photos, but once I saw them all over again, I was reminded of just how much. She is truly a laying miracle (because she doesn't walk yet 😁, otherwise she'd be a walking miracle).
Staying the night in the hospital has been really interesting. We got into the Ronald McDonald House again last night, but the previous nights I was staying with Ella. The PICU is a really intense place. These nurses and doctors have to deal with so many things that many people don't realize... One night, I was woken up by a nurse telling me there was an emergency and asked if I could watch Ella for a bit. I, of course, responded with a yes, and instantly my mind went back to the night that we received the call when Ella's "status had changed". It's something that I wish no parent would have to experience. I started tearing up and prayed for the parents of the child who's life was at risk. I hope that I won't have to receive another one of those calls ever again.
Big day tomorrow. I'll keep you all posted.
Love,
Jillian
Tuesday, July 24, 2018
These Roller Coaster Days...
Hello everyone,
My blog post that I wrote yesterday got deleted from my phone so I am going to rewrite it and update it since a lot of it got changed.
Yesterday Ella went in for a heart cath procedure. This is done by our cardiologist, Dr. Hill. He goes into her arteries with a scope through her thigh and arms. He was able to see the pressures in her heart and was able to put a balloon into her aortic arch, where the blockage is. He also checked out Ella's clots in her neck arteries. He came back saying that he was able to get the blockage smaller, but not totally taken care of. He was hoping that the leak near the aorta would be less because the pressure in the left side of the aortic arch would be less.He also noted that the clots are kind of a lost cause... Her body has created so many collateral veins to carry the blood to and from her head (isn't that amazing? God created us all so amazingly I can't even believe it). So yesterday I would've said, YAY it worked! But new news from the echo from this morning shows that the blockage was not taken care of, it actually looks like it is a kink of some sort, and it needs to get surgically repaired. 😔
This morning through the afternoon, Ella was really struggling to breathe and her oxygen sats, ever since the cath, were extremely low (hitting low 40s at times). She was gasping for breath a lot and I just couldn't watch her struggle so much. Her sats continued to stay low and alarms were blaring all night and day alerting us of this. I ended up leaving and going home with my dad to grab our car and a few other things that she would like to have in the hospital room. While driving back, I broke down crying. It felt like we were really going to lose our baby girl. I had known this was a possibility all along, especially given the statistics of her condition, but the reality of it really hit me. I was listening to KLove on the radio and felt like God was speaking to me through each song, telling me that He has a plan and that I need to trust in Him. I called Matt and we talked about how we hate to see her suffer and how if God was going to take her, we would hope it would be soon so she won't have to suffer anymore... It's odd how circumstances change our outlook. When we were first admitted, we were determined to do anything for her, but our hearts changed a little... Watching her breathe so hard and so fast and crying just kills us. We continue to look to God for strength and wisdom during these hard times. I was texting with the surgeon's assistant, Ashley, and told her I was afraid we were going to lose her. She was so encouraging and reminded me that there are still options. Matt and I have talked about how we have never lost hope, because God can do anything, but sometimes it's been hard to see things optimistically.
I got back and met up with Ashley and Dr. Watanabe (the surgeon). They gave her blood to see if that would help with her sats. I honestly thought of doing that earlier because I had seen it help her so many times before, but I didn't say anything. Looking back now, I wish I would have! I was relieved that they thought of trying that because it has been a game changer. We talked about the different surgical options and Dr. Watanabe and Ashley seemed so hopeful that these could work. My outlook, once again, changed. I was feeling much more positive about things and felt like they would do all that they can to help Ella get better. Dr. Watanabe has been such an encouragement to me as well. I know that he is so passionate about his job and really loves his patients, it is so evident in the way that he thinks about different options and looks for new ideas that could help. And Ashley has always been such an encouragement to me because she explains things really well, but in a gentle way. He is hoping that her oxygen levels will start to even out and that the tests he will run tomorrow will show that she won't need surgery right away. He is really wanting to wait as long as possible to give her surgery. The earliest they would be able to get us in is Monday but he's hoping to hold off a couple of weeks.
I am happy to say that Ella's sats have improved dramatically since the blood transfusion!!! She has been satting between 75 and 80 since she started receiving them. God brought me to a place of surrender once again and rescued our baby girl. I'm not sure if I've said this in a previous blog, but I have a new understanding of what it must've been like when Abraham trusted in God and surrendered Isaac up to him. It must've been so hard for him, yet he obeyed God and trusted Him with his son. I know that I need to trust God with Ella, no matter the outcome.
In other news, Ella got her FIRST TOOTH!!! She has been biting my finger for a week or so now and it finally came through. She's only 3.5 months and has a tooth! So she is ahead of the game in one thing haha! The little snaggle tooth is cutting the underneath of her tongue though, she really can't catch a break!!! We are still awaiting a real, responsive smile from her and for her to start eating by mouth. She still seems to have the development of a newborn rather than a three month old. It's sometimes hard for me to not worry about all of that, coming from a Child Development background. I see how behind she is physically and socially and I get a little nervous. I also worry about her having trust issues later in life due to us not being able to go to her when she cries at night in the hospital, but once again, I am trusting the Lord.
Talk about a roller coaster of a day... Please pray that she will get stronger and that her labs tomorrow will be good so we can go home and put off the surgery for a couple of weeks. Please pray for us to be wise in making decisions for her too.
I will update you as soon as I can about the surgery date.
Love,
Jillian
My blog post that I wrote yesterday got deleted from my phone so I am going to rewrite it and update it since a lot of it got changed.
Yesterday Ella went in for a heart cath procedure. This is done by our cardiologist, Dr. Hill. He goes into her arteries with a scope through her thigh and arms. He was able to see the pressures in her heart and was able to put a balloon into her aortic arch, where the blockage is. He also checked out Ella's clots in her neck arteries. He came back saying that he was able to get the blockage smaller, but not totally taken care of. He was hoping that the leak near the aorta would be less because the pressure in the left side of the aortic arch would be less.He also noted that the clots are kind of a lost cause... Her body has created so many collateral veins to carry the blood to and from her head (isn't that amazing? God created us all so amazingly I can't even believe it). So yesterday I would've said, YAY it worked! But new news from the echo from this morning shows that the blockage was not taken care of, it actually looks like it is a kink of some sort, and it needs to get surgically repaired. 😔
This morning through the afternoon, Ella was really struggling to breathe and her oxygen sats, ever since the cath, were extremely low (hitting low 40s at times). She was gasping for breath a lot and I just couldn't watch her struggle so much. Her sats continued to stay low and alarms were blaring all night and day alerting us of this. I ended up leaving and going home with my dad to grab our car and a few other things that she would like to have in the hospital room. While driving back, I broke down crying. It felt like we were really going to lose our baby girl. I had known this was a possibility all along, especially given the statistics of her condition, but the reality of it really hit me. I was listening to KLove on the radio and felt like God was speaking to me through each song, telling me that He has a plan and that I need to trust in Him. I called Matt and we talked about how we hate to see her suffer and how if God was going to take her, we would hope it would be soon so she won't have to suffer anymore... It's odd how circumstances change our outlook. When we were first admitted, we were determined to do anything for her, but our hearts changed a little... Watching her breathe so hard and so fast and crying just kills us. We continue to look to God for strength and wisdom during these hard times. I was texting with the surgeon's assistant, Ashley, and told her I was afraid we were going to lose her. She was so encouraging and reminded me that there are still options. Matt and I have talked about how we have never lost hope, because God can do anything, but sometimes it's been hard to see things optimistically.
I got back and met up with Ashley and Dr. Watanabe (the surgeon). They gave her blood to see if that would help with her sats. I honestly thought of doing that earlier because I had seen it help her so many times before, but I didn't say anything. Looking back now, I wish I would have! I was relieved that they thought of trying that because it has been a game changer. We talked about the different surgical options and Dr. Watanabe and Ashley seemed so hopeful that these could work. My outlook, once again, changed. I was feeling much more positive about things and felt like they would do all that they can to help Ella get better. Dr. Watanabe has been such an encouragement to me as well. I know that he is so passionate about his job and really loves his patients, it is so evident in the way that he thinks about different options and looks for new ideas that could help. And Ashley has always been such an encouragement to me because she explains things really well, but in a gentle way. He is hoping that her oxygen levels will start to even out and that the tests he will run tomorrow will show that she won't need surgery right away. He is really wanting to wait as long as possible to give her surgery. The earliest they would be able to get us in is Monday but he's hoping to hold off a couple of weeks.
I am happy to say that Ella's sats have improved dramatically since the blood transfusion!!! She has been satting between 75 and 80 since she started receiving them. God brought me to a place of surrender once again and rescued our baby girl. I'm not sure if I've said this in a previous blog, but I have a new understanding of what it must've been like when Abraham trusted in God and surrendered Isaac up to him. It must've been so hard for him, yet he obeyed God and trusted Him with his son. I know that I need to trust God with Ella, no matter the outcome.
In other news, Ella got her FIRST TOOTH!!! She has been biting my finger for a week or so now and it finally came through. She's only 3.5 months and has a tooth! So she is ahead of the game in one thing haha! The little snaggle tooth is cutting the underneath of her tongue though, she really can't catch a break!!! We are still awaiting a real, responsive smile from her and for her to start eating by mouth. She still seems to have the development of a newborn rather than a three month old. It's sometimes hard for me to not worry about all of that, coming from a Child Development background. I see how behind she is physically and socially and I get a little nervous. I also worry about her having trust issues later in life due to us not being able to go to her when she cries at night in the hospital, but once again, I am trusting the Lord.
Talk about a roller coaster of a day... Please pray that she will get stronger and that her labs tomorrow will be good so we can go home and put off the surgery for a couple of weeks. Please pray for us to be wise in making decisions for her too.
I will update you as soon as I can about the surgery date.
Love,
Jillian
Thursday, July 19, 2018
There's Always Hope
Dr. Hill is back!
We are so thankful for our cardiologist. He has been gone for 3 weeks and we missed him!
We saw him yesterday and unfortunately there wasn't good news. Ella's heart is a bit out of wack. It's so weird because only 3 weeks ago we were told the function is great... so in a nut shell, the aortic valve has a mass of, presumably, scar tissue from where the surgery took place. This is making it so the right side of it has low blood pressure and the left has high. Because of the high blood pressure on the left, there is a leakage. Dr. Hill seemed really bummed about this echo... he walked in after looking at it and said that Ella can't seem to catch a break. I agree with him. Poor little thing always has something new for us... He wants to do a heart cath in hopes of removing the blockage, resolving the blood pressure and leakage. He will also be checking out the clots since we were told there is no progress. He thinks these may be too hard now that they are older and that he won't be able to get to them. We may not even need them to go away depending on the drainage that he will see in the collateral veins that her body has created to create blood flow.
I looked at him and said, "Honestly, I have told Matt that I am just waiting for the appointment where you guys tell us there's nothing more you can do... are you there yet?" He looked at me and sighed and said, "I was pretty much at that point when I saw the echo, then my mind went to transplant, then it went to cath. So let's start with the cath and then we will know more." These words cut like a knife, yet for some reason, I had a peace. It was almost as if God has been preparing me for this news.
This time at home has felt a little different to me than our first one. Almost less hopeful. I hate saying that because THERE'S ALWAYS HOPE, but watching her struggle to breathe and cough so much with the trach has been really hard. Today I cried off and on almost all day. I still can't believe that our Ella girl has to suffer so much. I want to take all of this away from her, but can't. There is a lot that I want... I want her to get the trach out, I want her to start thriving and healing, I want those clots to go away, I want time with her awake where I don't have to give her medication or do something with her trach that makes her uncomfortable, I want her to like being snuggled, I want her to smile at me, I just want to be able to have my baby girl not sick anymore... but I may never get these things. This reality is hard for me to handle. It feels like time with her is quickly fading away, but I could be totally wrong. She may make a come back and surprise all of us. She does like to do that!
I keep holding onto a verse that I have continually said to God since we found out about her condition... It's from Psalm 13, "How long must I struggle with anguish in my soul, with sorrow in my heart every day?" The translations say it a little differently but all mean the same thing... how long must I anguish? I have said this to God many times in the last 7 months and still don't have an answer. I must say, don't we have an amazing God who cares for us and listens to our woes? He allows us to come to Him in despair, asking why, and still loves us and comforts us in ways we cannot explain. For this I am thankful. He knows every tear I have shed on behalf of Ella and all that she has gone through and comforts me in inexplicable ways. He holds me fast, I just need to let go and let the creator of the world hold me and my family, no matter how hard that is. Much easier said than done, unfortunately, but God's grace is sufficient for us.
Love,
Jillian
Sunday, July 15, 2018
Home Again!
Hi everyone!
Ella is officially 100 days old!
We busted out of the hospital on Thursday in a tizzy because we had to get to the ENT to talk about the possibility of getting Ella's trach out. Unfortunately he said he would like to wait until our normal cardiologist gets back and assesses her. So we rushed for nothing, but hey! It got us out of the hospital quickly! It was amazing how fast the morning went because we had a lot to get done and a lot to pack back out. Ella is still on extra oxygen 🙁 so we had to bring all of her home equipment-the oxygen concentrator and t mist machine- to the hospital to try to figure out how to get such a low amount of extra oxygen to her. I could tell the respiratory therapists and equipment suppliers worked hard at getting it all to me and figured out. I am so thankful I didn't have to do that! I learned all of the new things that came with the oxygen and took notes for Matt. This stuff is complicated! I'm thankful God has allowed me to understand all of the medical jargon and procedures to be able to take care of Ella. I am still hopeful that we can wean her off, but there's also a sense of security knowing that her sat levels will rarely drop too low.
The first night back was rough. Matt and I were both up a lot the night before with Eli or Ella and were already exhausted. I was so overwhelmed by the new care that Ella required and the attention that Eli wanted that at one point I had to get up and leave the room to go cry in the bathroom. Usually Matt and I take turns at being overwhelmed, but that night both of us were and it was stressful.
Thankfully the next day was much easier and we all started to settle back into a routine. The mornings around the Waechter house are pretty nuts with all of the care that Ella needs and the different things we have to do to keep up with our "heart homework binder". Not gonna lie, it's a lot. But thankfully Eli loves morning cartoons and the nurse is here when Matt's at work to watch Ella while I get Ella weighed and get meds measured out. 😊
Ella sleeps a lot still even though she's 3 months old. I am not sure if it's because her heart is working overtime or if she is still exhausted from being woken up all of the time at the hospital.
Saturday was a great day. I even got 2 hours where everyone else was sleeping so I could take care of things that I am not able to when the kids are awake. It was so nice to be at home just the four of us. We also received our new double stroller that we ordered so that we could trek around Ella's gear. We've been going for short walks around our house and Eli and Ella both love it. It's funny how much we have to bring with us on these walks. You'd think we were going somewhere for the day! Once Ella doesn't have a trach anymore it will be so much easier to go places and to live a closer to "normal" life.
We've continued to receive meals from people and it has been such a blessing. It's amazing how not having to even think about dinner, but knowing we will all be fed, relieves so much stress.
We have 3 appointments this week. 2 on Monday in Sacramento (one just to monitor her and how's she's doing overall and one to check back on her wound that's still barely on her head) and then her cardiologist appointment on Wednesday in Roseville (so glad I asked if they have a Roseville office! It'll cut out about an hour of driving!).
I'll keep you updated and continue to ask for prayer for guidance for her doctors and energy for us!
Love,
Jillian
Wednesday, July 11, 2018
90 days + Photos
Hi all!
We are going home tomorrow!!! Yippee!!! After what we thought was going to be a 3 day stay but ended up being 15, we are finally on our way out! Ella was unfortunately unable to get off the oxygen so we had to get new equipment for our home so that's what has been holding up our discharge. We are testing it out tonight. I am pretty bummed about this, but I am praying that we will be able to wean her off of it. Having to have her hooked up to equipment at home will be pretty rough... I am not totally sure how it's all going to go down because I won't be able to carry her and the oxygen concentrator up and down the stairs... Also, whenever we leave our house we will have to have an oxygen tank hooked up to her so we will have even more things to carry. Just call me a modern day bag lady 😂! But I am confident that she will be able to get off of it relatively soon, I am just waiting for the ok to wean her off from the cardiologist. She has been satting pretty high today on 1/4 liter of oxygen (which probably means nothing to you, but it's a low amount 😀) and we have the capabilities to go down to 1/32 liter.
BIG NEWS! We are going to an Ear-Nose-Throat (ENT) doctor tomorrow at 1pm to talk about getting Ella's trach out!!! It's been a bit controversial between the different doctors... The PICU doctor and cardiologists want to get it out ASAP because heart babies aren't often successful with trachs, but the pulmonologist wants to keep it in for the next surgery so we have a secure airway and so that we won't have to intubate/extubate during the next surgery; but who knows when that will be! I can see both sides. Which leads me to the next update... Dr. Swanson (PICU doctor) talked to me about having Dr. Hill (cardiologist) go back in to try to do something with the clots to get them out. There has been no progress with them, even with the two shots a day, so we need to do something more aggressive. We will be seeing Dr. Hill sometime next week, so we shall see! I will keep you posted! The thought of getting the trach out makes my heart sing! It will make things so much less complicated and the care for her will not be as intense. Matt and I have felt like we have to do so many negative things to her when she's awake that we don't get to do the normal, fun things with her.
I am so, so excited to be going home. I went home last night for the first time in 13 days and it got me so excited for tomorrow!
We have been in the hospital a total of 90 as of tomorrow... So crazy...I will continue to post updates and I will hopefully be able to update you all on her ENT appointment tomorrow!!!
Love,
Jillian
We are going home tomorrow!!! Yippee!!! After what we thought was going to be a 3 day stay but ended up being 15, we are finally on our way out! Ella was unfortunately unable to get off the oxygen so we had to get new equipment for our home so that's what has been holding up our discharge. We are testing it out tonight. I am pretty bummed about this, but I am praying that we will be able to wean her off of it. Having to have her hooked up to equipment at home will be pretty rough... I am not totally sure how it's all going to go down because I won't be able to carry her and the oxygen concentrator up and down the stairs... Also, whenever we leave our house we will have to have an oxygen tank hooked up to her so we will have even more things to carry. Just call me a modern day bag lady 😂! But I am confident that she will be able to get off of it relatively soon, I am just waiting for the ok to wean her off from the cardiologist. She has been satting pretty high today on 1/4 liter of oxygen (which probably means nothing to you, but it's a low amount 😀) and we have the capabilities to go down to 1/32 liter.
BIG NEWS! We are going to an Ear-Nose-Throat (ENT) doctor tomorrow at 1pm to talk about getting Ella's trach out!!! It's been a bit controversial between the different doctors... The PICU doctor and cardiologists want to get it out ASAP because heart babies aren't often successful with trachs, but the pulmonologist wants to keep it in for the next surgery so we have a secure airway and so that we won't have to intubate/extubate during the next surgery; but who knows when that will be! I can see both sides. Which leads me to the next update... Dr. Swanson (PICU doctor) talked to me about having Dr. Hill (cardiologist) go back in to try to do something with the clots to get them out. There has been no progress with them, even with the two shots a day, so we need to do something more aggressive. We will be seeing Dr. Hill sometime next week, so we shall see! I will keep you posted! The thought of getting the trach out makes my heart sing! It will make things so much less complicated and the care for her will not be as intense. Matt and I have felt like we have to do so many negative things to her when she's awake that we don't get to do the normal, fun things with her.
I am so, so excited to be going home. I went home last night for the first time in 13 days and it got me so excited for tomorrow!
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| Sassy face with a mohawk! We love doing her hair like this! |
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| One of the fabulous nurses, Emily, made a "toy" for Ella to play with |
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| One of my favorite pictures we have taken so far... Look at how sweet Eli is with her. We couldn't get him to look at the camera! He wanted to touch her and kiss her instead. |
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| Our sweet babies!!! |
We have been in the hospital a total of 90 as of tomorrow... So crazy...I will continue to post updates and I will hopefully be able to update you all on her ENT appointment tomorrow!!!
Love,
Jillian
Friday, July 6, 2018
Quick Update + Prayer Request
Hi all!
This post will be short and sweet. Ella has been a total ROCK STAR with the new g-tube. It looks like it is pretty painful, especially when she is coughing, but she didn't mind it when I held her. She has been taking her food well and it doesn't seem to bug her at all. I was not expecting them to be able to go back to full volume so quickly, but because she is responding so well, we are there! I just assumed it would take Ella a little longer to adjust since everything has taken a little longer for her haha!
Ella has been chunking up quite a bit! Her legs look like "normal" baby legs! No more little chicken legs. We may even have a baby that will get rolls! Eli never did 😊. So the fortified breast milk and HCT oil has been really helping!
So the main reason I wanted to write a post tonight is because Ella is still needing oxygen support (25%) and they're thinking that she may need it when she goes home. I REALLY hope she doesn't because she will have to be hooked up to an oxygen tank all of the time and I feel like it will really hinder her physical development because she won't be so mobile. The thought of trucking around an oxygen tank any time that I take her anywhere sounds pretty daunting. Please, please, please pray that Ella won't need any O2 support ASAP. They are talking about sending us home on SUNDAY, but I would like to stay if she's still in need of oxygen to wean her off while we are in the safety of the hospital. Who would've thought I would be the one requesting to possibly stay longer??? HA! So I am praying she will be able to be weaned off through the day tomorrow.
Thank you prayer warriors!!! Love to you all!
Love,
Jillian
This post will be short and sweet. Ella has been a total ROCK STAR with the new g-tube. It looks like it is pretty painful, especially when she is coughing, but she didn't mind it when I held her. She has been taking her food well and it doesn't seem to bug her at all. I was not expecting them to be able to go back to full volume so quickly, but because she is responding so well, we are there! I just assumed it would take Ella a little longer to adjust since everything has taken a little longer for her haha!
Ella has been chunking up quite a bit! Her legs look like "normal" baby legs! No more little chicken legs. We may even have a baby that will get rolls! Eli never did 😊. So the fortified breast milk and HCT oil has been really helping!
So the main reason I wanted to write a post tonight is because Ella is still needing oxygen support (25%) and they're thinking that she may need it when she goes home. I REALLY hope she doesn't because she will have to be hooked up to an oxygen tank all of the time and I feel like it will really hinder her physical development because she won't be so mobile. The thought of trucking around an oxygen tank any time that I take her anywhere sounds pretty daunting. Please, please, please pray that Ella won't need any O2 support ASAP. They are talking about sending us home on SUNDAY, but I would like to stay if she's still in need of oxygen to wean her off while we are in the safety of the hospital. Who would've thought I would be the one requesting to possibly stay longer??? HA! So I am praying she will be able to be weaned off through the day tomorrow.
Thank you prayer warriors!!! Love to you all!
Love,
Jillian
Thursday, July 5, 2018
Fresh Face
Hi everyone!
Today marks 3 months of having Ella with us! Boy have these last three months been the most insane three months of Matt and my lives. There have been crazy times of serious anguish and times of great joy. Ella has been such a gift to us both and her story has touched so many lives. I can see God working through her in amazing ways already and she's only 3 months old!
We have been back in the hospital for a week now and Ella had a g-tube put in today. This tube goes directly into her tummy so she doesn't have to have the NG in her nose anymore. We knew Ella would need one eventually because the NG tubes are difficult when trying help babies eat orally, so since we were already in the hospital we decided to get it done now.
The surgery went really well! Sometimes kids need to go on the ventilator when under anesthesia but she didn't have to! I was so nervous about this... I asked the anesthesiologist if she would have to go on the vent and she said there was a high probability, but she didn't!!!!!!!! YAY!!! She came back really loopy but awake and it was so sweet getting to see her face. We have seen her face without any tape or tubes twice in her life. Once, when she was born, once when her NG was changed. Her face is too cute to cover up!
We've heard a few different numbers when it comes to days until discharge, but the earliest we've heard was two days and the latest was (well, ideally the latest, but with Ella, who knows 😉) a week from today. Matt and I were calculating and Ella has been home less than one tenth of her life. In three months she has been home a total of eight days. How crazy is that??? We are hoping this next stay is much longer than eight days!
There has been talk of "decanulating" Ella sooner rather than later. This would mean getting her trach out! There are a few differing opinions between the doctors right now. Some say the sooner the better because there's a greater chance of getting sick when the trach is involved, and some say that she has a stable airway, why change that before her next surgery... We can see the positives and negatives in both arguments. Of course, we would love to get the trach out, but we also want to be cautious in doing so. The trach care is constant. It is pretty nuts how your brain and eyes have to be on it at all times. It is the reason that we have home nursing, we wouldn't need it if it weren't for the trach. And all of the equipment we carry around whenever we go anywhere is due to the trach. Please pray for God to give Ella's doctors wisdom and pray that He will give us clarity as to how to best advocate for her.
Ella's development is, as you'd expect, pretty behind. We have continued to work with physical therapy on how to help her learn to hold up her own neck and how to strengthen and stretch her muscles in her body. We have also had speech therapy come in to help us get her ready to eat orally. We are a ways off with this part... It's so funny because the times that speech comes in to see Ella, she is not wanting to suck on her pacifier or on a finger, so they don't see what she can really do. I was finally fed up with explaining that she does suck on my finger and she does suck on her pacifier...;just not when they're there, so I took a video. 😁 The speech pathologists were excited to see the video and that she likes her paci. So hopefully we will have big progress in that area soon! Ella even sucked on her paci for 3 hours tonight!
Once again, we are so thankful for all of our nurses and doctors. They have been so amazing. I can't believe how much time and effort they put into our baby. It is so incredible!!!
Look at how beautiful her face is! We get to see it all!!! YAY!
Love,
Jillian
Today marks 3 months of having Ella with us! Boy have these last three months been the most insane three months of Matt and my lives. There have been crazy times of serious anguish and times of great joy. Ella has been such a gift to us both and her story has touched so many lives. I can see God working through her in amazing ways already and she's only 3 months old!
We have been back in the hospital for a week now and Ella had a g-tube put in today. This tube goes directly into her tummy so she doesn't have to have the NG in her nose anymore. We knew Ella would need one eventually because the NG tubes are difficult when trying help babies eat orally, so since we were already in the hospital we decided to get it done now.
The surgery went really well! Sometimes kids need to go on the ventilator when under anesthesia but she didn't have to! I was so nervous about this... I asked the anesthesiologist if she would have to go on the vent and she said there was a high probability, but she didn't!!!!!!!! YAY!!! She came back really loopy but awake and it was so sweet getting to see her face. We have seen her face without any tape or tubes twice in her life. Once, when she was born, once when her NG was changed. Her face is too cute to cover up!
We've heard a few different numbers when it comes to days until discharge, but the earliest we've heard was two days and the latest was (well, ideally the latest, but with Ella, who knows 😉) a week from today. Matt and I were calculating and Ella has been home less than one tenth of her life. In three months she has been home a total of eight days. How crazy is that??? We are hoping this next stay is much longer than eight days!
There has been talk of "decanulating" Ella sooner rather than later. This would mean getting her trach out! There are a few differing opinions between the doctors right now. Some say the sooner the better because there's a greater chance of getting sick when the trach is involved, and some say that she has a stable airway, why change that before her next surgery... We can see the positives and negatives in both arguments. Of course, we would love to get the trach out, but we also want to be cautious in doing so. The trach care is constant. It is pretty nuts how your brain and eyes have to be on it at all times. It is the reason that we have home nursing, we wouldn't need it if it weren't for the trach. And all of the equipment we carry around whenever we go anywhere is due to the trach. Please pray for God to give Ella's doctors wisdom and pray that He will give us clarity as to how to best advocate for her.
Ella's development is, as you'd expect, pretty behind. We have continued to work with physical therapy on how to help her learn to hold up her own neck and how to strengthen and stretch her muscles in her body. We have also had speech therapy come in to help us get her ready to eat orally. We are a ways off with this part... It's so funny because the times that speech comes in to see Ella, she is not wanting to suck on her pacifier or on a finger, so they don't see what she can really do. I was finally fed up with explaining that she does suck on my finger and she does suck on her pacifier...;just not when they're there, so I took a video. 😁 The speech pathologists were excited to see the video and that she likes her paci. So hopefully we will have big progress in that area soon! Ella even sucked on her paci for 3 hours tonight!
Once again, we are so thankful for all of our nurses and doctors. They have been so amazing. I can't believe how much time and effort they put into our baby. It is so incredible!!!
Look at how beautiful her face is! We get to see it all!!! YAY!
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| Right after surgery. A little drugged out, but so pretty and alert! Look at that fresh face! |
Jillian
Sunday, July 1, 2018
Back to Ella's 1st Home
Hi all!
We had eight great days at home! I feel like Ella's development has just sky rocketed! She is so much more alert and looks healthier overall. We have had a night nurse almost every night but Monday and Monday made us appreciate her even more! She watches Ella while we sleep and has changed her diaper so often that Ella's diaper rash has completely gone away! One less irritant for her is a success in my book!
We had a great time starting to get to know Ella on a deeper level this past week and we were able to bond with her like we had always wanted to but couldn't really because we were stuck in the hospital room. Ella loves to look at our ceiling and at the tall trees. Eli loves to snuggle her and kiss her. It was so sweet when he got to hold her for the first time. He just had a HUGE smile on his face and she was not happy. It was great. Haha! We've been spending a lot of time on the back deck so Eli can play in his pool as we watch.
Unfortunately, we are currently back at the hospital... On Tuesday evening I noticed that Ella started to turn more blue than normal. We immediately put on her pulse ox and watched as her oxygen saturation (sats) numbers dipped to 59 then stayed in the 60s for a while then they went back up to the 70s. I called the cardiologist office and the doctor told us to watch her and if she dips below 70 again to call. She didn't so we didn't end up calling, but the doctor called again in the morning to check on her. I told him she was floating around 71-72 and he wanted us to come in just to be safe. We went in and were told that we should be readmitted to the hospital to be watched. It was going to be a while before Ella would have a room, so I took her home and called our parents and told them to come over... just in case. The cardiologist talked about her needing another surgery and how his patients with a trach and a single ventricle heart didn't make it very long, so I worried this may be the last time that we had Ella at our house. It is pretty surreal having that feeling... Not knowing if your child will be coming home again. It sucks (for lack of a better word) not knowing what Ella's future is going to look like or knowing what we need to prepare ourselves for.
After a while, we checked into the hospital on Wednesday night. We were greeted with "Hi!...oh no... you're back... but we missed you!" It was like a little reunion. The eight days that we were home were awesome. Being back here has made me so thankful for our home and I look forward to the day where we get to go home again.
Since being here on Wednesday, Ella's sats have been all over the place still. She has been on a little bit of oxygen support (around 25%, room air is 21%). We are hoping to get her off completely soon.
We decided to have Ella's G-tube put in since we are already here. This is a tube that feeds her and is located in her tummy instead of her nose. Before we left the hospital last time, the doctors told us that it was pretty inevitable that she would need one, but we just didn't want to stay another week. So here we are! She will be having the surgery on Tuesday or Thursday, but we were told they're pretty sure it will be Tuesday. Please pray that that will go smoothly. We will have to stay here to monitor her for about a week after the surgery. So we are making ourselves at home here once again 😊 The room we are in is a bit smaller than our old room so it's a bit difficult containing Eli in here, but overall he's been a trooper.
As if Ella didn't have enough going on... She has also contracted an infection somewhere in her trachea. They are saying that the culture is showing it to be e-coli but we aren't totally sold. Our nurse, Emily (who we always request when she's on) thinks that the sample may have been contaminated and she isn't showing any signs of it, but to be careful, we have her on antibiotics.
I will write again after her surgery to update you all! 💜
Love,
Jillian
We had eight great days at home! I feel like Ella's development has just sky rocketed! She is so much more alert and looks healthier overall. We have had a night nurse almost every night but Monday and Monday made us appreciate her even more! She watches Ella while we sleep and has changed her diaper so often that Ella's diaper rash has completely gone away! One less irritant for her is a success in my book!
We had a great time starting to get to know Ella on a deeper level this past week and we were able to bond with her like we had always wanted to but couldn't really because we were stuck in the hospital room. Ella loves to look at our ceiling and at the tall trees. Eli loves to snuggle her and kiss her. It was so sweet when he got to hold her for the first time. He just had a HUGE smile on his face and she was not happy. It was great. Haha! We've been spending a lot of time on the back deck so Eli can play in his pool as we watch.
Unfortunately, we are currently back at the hospital... On Tuesday evening I noticed that Ella started to turn more blue than normal. We immediately put on her pulse ox and watched as her oxygen saturation (sats) numbers dipped to 59 then stayed in the 60s for a while then they went back up to the 70s. I called the cardiologist office and the doctor told us to watch her and if she dips below 70 again to call. She didn't so we didn't end up calling, but the doctor called again in the morning to check on her. I told him she was floating around 71-72 and he wanted us to come in just to be safe. We went in and were told that we should be readmitted to the hospital to be watched. It was going to be a while before Ella would have a room, so I took her home and called our parents and told them to come over... just in case. The cardiologist talked about her needing another surgery and how his patients with a trach and a single ventricle heart didn't make it very long, so I worried this may be the last time that we had Ella at our house. It is pretty surreal having that feeling... Not knowing if your child will be coming home again. It sucks (for lack of a better word) not knowing what Ella's future is going to look like or knowing what we need to prepare ourselves for.
After a while, we checked into the hospital on Wednesday night. We were greeted with "Hi!...oh no... you're back... but we missed you!" It was like a little reunion. The eight days that we were home were awesome. Being back here has made me so thankful for our home and I look forward to the day where we get to go home again.
Since being here on Wednesday, Ella's sats have been all over the place still. She has been on a little bit of oxygen support (around 25%, room air is 21%). We are hoping to get her off completely soon.
We decided to have Ella's G-tube put in since we are already here. This is a tube that feeds her and is located in her tummy instead of her nose. Before we left the hospital last time, the doctors told us that it was pretty inevitable that she would need one, but we just didn't want to stay another week. So here we are! She will be having the surgery on Tuesday or Thursday, but we were told they're pretty sure it will be Tuesday. Please pray that that will go smoothly. We will have to stay here to monitor her for about a week after the surgery. So we are making ourselves at home here once again 😊 The room we are in is a bit smaller than our old room so it's a bit difficult containing Eli in here, but overall he's been a trooper.
As if Ella didn't have enough going on... She has also contracted an infection somewhere in her trachea. They are saying that the culture is showing it to be e-coli but we aren't totally sold. Our nurse, Emily (who we always request when she's on) thinks that the sample may have been contaminated and she isn't showing any signs of it, but to be careful, we have her on antibiotics.
I will write again after her surgery to update you all! 💜
Love,
Jillian
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Wednesday... Thursday...Friday-We Are Home!
Wow. Talk about a whirlwind. Sorry I wasn't able to update everyone on Thursday. Things just got so busy!!! It was so different than wh...
