Hi all!
We had a third tough day in a row yesterday... Ella was really out of it most of the day and we weren't allowed in her room for a lot of it as well because the doctor and a cardiologist were trying to get a new arterial (A) line in (in her groin 😞) and couldn't get it in and it took over 3 hours. So lots of poking and nothing to show for it. The reason they had to do this was because her arterial line that they had in her wrist stopped working. The doctors and nurses really need this line so that they can get blood draws out and to be able to monitor her blood pressure. Ella was also given the OK to go on a medication called heparin which will help with the clots in her neck and the nurses need to draw blood frequently to make sure that the coagulation in Ella's blood is correct (at least that's my understanding). So all of that to say... this A-line is very important. Our surgeon, Dr. Watanabe, wanted to try for himself today and was able to get the line in, in minutes! I woke up praying that whoever would be trying to get this line in would be able to get it in today and the Lord gifted us with that just a few minutes ago!!! 🙌
Dr. Watanabe added a second chest tube, so now she has two, one on each side. They continue to have a lot of output so we are praying that slows a bit so she can get them out. We need these and the ventilator out before we get to hold her. I just really want Matt to get to hold her. She is now 25 days old and he hasn't been able to hold his baby girl. I cannot wait for the day that he gets to. It will be amazing. I better wear waterproof mascara that day! 😉
Ella's swelling in her face went up yesterday as well which was discouraging... but when we walked in the door today she looked the least swollen that we've seen since surgery!
Ella was SUPER alert today! It was so awesome! We got to see her eyes open a TON! The nurse asked to remove that white patch that monitored gases coming from her head so we even got to see more of her face! We sang, talked and read to Ella. She loved looking at the pictures in the books and at her mommy and daddy's faces. It was like we got a taste of what it is like to have a newborn! It totally refreshed our souls. 💜
She is still on the ventilator but the doctor that just came on to his 5 day shift said he wants to push her to get extubated. Please pray that this will indeed happen and that Ella will be able to breathe on her own soon. If all goes as well as they can after being extubated, we should be able to bring her home within 3-4 more weeks. We really just want to take her home and start our lives as a family of four.
OH! ONE MORE THING! I GOT TO PUT SOCKS ON HER YESTERDAY! It was the first time that I got to "dress" her! It was a sweet moment for me.
Thank you all for your prayers and support! We love you all!
Jillian
Monday, April 30, 2018
Saturday, April 28, 2018
Another Tough Day
Today is another not so good day. We've had 2 in a row now so I am ready for a really good day tomorrow.
There was a glimmer of a chance that Ella would be extubated (taken off the ventilator) but her chest x ray and performance with the sprint made the doctors decide otherwise. They aren't even going to do another sprint today... the lack of progress with her lungs is so wearing... We keep praying for God to just POP! make her lungs work.
The doctors are now hoping to put her on an anticlogging medication so that the clots will start to dissipate from her neck. Her swelling has gone up again... 😔 it was weird because we walked in and saw her face and knew instantly that her face is bigger. The nurse agreed with us. They are worried that will make the brain bleed get worse, but it's been stable for a week and so the neurologist thinks it should be ok.
Ella's legs are getting so thin, like I've mentioned before, and I can tell the doctors are really getting nervous about it. They've given her the most nutrition they can through the IV but she needs more. This is when I get really upset that she got cylothorax. It is hard for me to see God's reason for this to happen. It seems like everything else is starting to fall apart because of the condition she's in due to the poor nutrition. The doctors and surgeons have told us that her lung function is low partially due to her lack of strength because she isn't getting fed. Her bleeds and incisions are not healing as quickly because of the poor nutrition...
I was just told they are going to have to out another chest tube in to relieve her body of excess fluid... it's frustrating because now we are for sure going backwards.
The stress level in her room is much higher today. Everytime the doctors have come in they have a new piece of unfortunate information...
Please pray...
-the clots go away quickly with only a little of the medication needed.
- Ella's fluid around her lungs gets out and that she won't need so much support from the ventilator so she can get off of it.
-That Ella won't need to get a tracheotomy.
-That Ella's white blood counts continue to go down.
-pray they can get correct blood draws from the new line they put it. It's not really working and she's been poked so many times already...
-Pray that Ella gains strength. I don't know how much more she can take...
-Jillian
Friday, April 27, 2018
Catching Up
Hi all,
Yesterday was a busy day for Ella and her team. Her white blood cell counts went up so they were nervous there was an infection. The lines that they have in her were getting old so they thought this could've caused an infection. They took out the umbilical cord line and replaced it with one in her right wrist. They also took out the drainage chest tube in hopes that they wouldn't need to replace it but decided she needed another one put in on her right side to help remove some of the excess fluid and gas around her lungs. They also removed the external pace maker lines! 🙌 Yay! We can see her tummy and chest much easier now and there aren't as many cords lying on her bed.
Ella is still on the ventilator. Her body has gotten pretty weak because she was not able to have food for so long. Her legs have gotten so skinny it's hard to see... she is a bit malnourished and they are trying to feed her more through the IVs to give her more strength so maybe she can start breathing on her own. Yesterday they did "sprints" where they had her off any help from the ventilator for a little while and she did well in the morning (3 hours before she got tired) then in the late afternoon she didn't do very well so they decided to give her a day of rest today. They will start the sprints again tomorrow... it's starting to feel like she will never get off of this this thing... the earliest would be Sunday. If she is unable to resolve this on her own in the next two weeks she will need to have a tracheotomy put in... the PICU doctor says it's still a 50/50 chance... talk about a hard blow. Sometimes I just think Ella's never going to catch a break. Matt reminded me that it was looking like she would definitely need the pace maker and she doesn't, so maybe this will be the same. He always puts things into a good perspective. I just get overwhelmed and can't think positively for a little while after we are given news like this. That's one of the millions of reasons why it's so good that we are together in this!
Please pray for her white blood cell count to go down and that her lungs will kick it into gear soon.
Love,
Jillian
Wednesday, April 25, 2018
It Takes A Team
Today Eli missed us so we booked it home this morning for a solid hour and a half 😁. He was so happy to see us. It was a surprise visit and I hope I never forget the look on his face and his reaction. He saw us and got the biggest grin and grabbed Matt and I around the neck in a big hug. It was so sweet. We then went and had lunch in Auburn with our pastor, Josh, and his wife, Colleen. We are so blessed by them. Our church family has been such a wonderful support. I can't wait to get back there on Sundays.
We had a meeting with our team of doctors today at 3 and everything is going about the same.
Ella is still on the ventilator but tolerating the "sprints" of time without the support turned on ok. They are hoping to be able to extubate (take out the ventilator) tomorrow or by the end of the PICU doctor's 5 days on. So we are praying for tomorrow, of course, but are preparing ourselves for a later time as well. She will then go on the bubbles (CPAP) machine and if all goes well after a few days on that she'll go on the high flow machine; then if all goes well on that she should be off any respiratory support after a week or so! So pray that things go smoothly!
I asked the doctors if all things went as smoothly as it could how much longer would we be here and they said 3-4 weeks after she's extubated. I laughed when I asked this because Ella is one that keeps us on our toes so I am not totally expecting to be out of here by then, but then again, she may surprise us!
Really GREAT news... Ella does not need the pace maker! The current in her heart kicked in and is pacing itself now. We were told that this often does not go away once it starts up. The doctors said that there is very little chance she will need the pace maker if she can sustain the pacing for 48 hours and she has! Yippee!
As I've mentioned before, Ella's lungs have had some issues with the upper lobes filling as much as they need to. They've done a ton of respiratory therapy with her and continue to do so. She hasn't cried like a normal newborn does and can't be moved around like a normal newborn so there are gas pockets that can't get out and her lungs aren't able to expand as much as they need to. They check the size of her lungs by x ray every other day or so. We are praying that she can quickly get those going so she can get her chest tube out and then the UAC line that's been in her umbilical cord. Then we can probably hold her! I can't believe that she's been alive for 20 days and I have held her for about a total of 2 minutes and Matt hasn't held her at all. I am finding comfort in the small touches and interactions that we get to have with her though. It's been sweet to get to touch her head, hold her fingers, and rub her feet. It's amazing how I almost forget that I haven't held her very much. I hope this doesn't affect her later because we are a pretty snuggly family so she will have to get used to it haha! 😂
Lastly, they are waiting to get the official read on the ultrasounds of the blood clots, but the tech doing the ultrasound said it looks like they're still there. So please pray these go away. They are a little unnerving...
Anyway, thanks for all of the love you showed me yesterday. Today hasn't had a lot of progress, but has been good. 💜
Love,
Jillian
Tuesday, April 24, 2018
Every Other Day Kind of Girl
Yesterday we were told in the morning that Ella most likely wont need a pace maker! So to celebrate, we did a quick trip home. It was just what we needed. I knew I missed home, but I didn't realize how much. It was so hard to leave... Eli was excited to be home with us and had a slumber party on our mattress with BB in our living room.
Like I've said before, Ella is an every other day kind of girl... so yesterday was a good day, so that means today was... yep... a not so good day...
We were told her body was not handling the breast milk well and she developed what's called chylothorax. It's essentially where her body developed leak of fat. So now she has to go on a non fat formula for 6-8 weeks so her body can heal. This one hit me hard. Really hard. I was so frustrated because her numbers were a 41 then a 61 the next day and all of a sudden they shot up to 215 and the doctors don't like to see it above 110. Honestly, I was mad at God. I had prayed and prayed that I'd be able to breastfeed her and now it looks like that will most likely never happen. I was bawling in our room and asking God why He's allowing all of these things to go wrong. I still don't know the answer to that but all I know is that we live in a fallen world and this has been a good example of that. I'm feeling pretty weary. I just wanted one thing that I could do that most normal mom's get to do but now that's been taken away too. Please pray for me to get some sort of encouragement... I am really discouraged.
Ella was also supposed to get extubated from the ventilator today and... you guessed it... that's postponed as well. Her oxygen SATs have been all over the place once again. Please pray that those even out so she can get extubated tomorrow.
I've read about a lot of these things happening and nothing can really prepare you for the heartbreak that comes with this process.
Sorry for the downer post, but today has been a pretty rough day.
-Jillian
Sunday, April 22, 2018
One Day at a Time
Hi everyone,
Today was a family-filled day! We had our brothers and sister-in-law in town as well as both sets of parents. Ella is one LOVED girl! We are so fortunate to have our family so close (or willing to drive!). Eli had so much fun playing with everyone. He is such a trooper. I am so glad that God made him so flexible with a go-with-the-flow kind of personality. It has made it much easier to have him down here with us.
Ella's swelling in her head has gone down a ton and it's nice to see her little face again. 😍 Once they took out the pic line (IV) in her scalp, the swelling has really gone down! We got to see her eyes quite a bit today too. I think they may be brown. Eli told us that his sister would be a redhead with brown eyes and so far he's right! She has more hair than Eli did at this point in his life! The night nurse said that the lipids that they put through her IVs make kids have luscious hair and even though she's far from luscious, I am impressed with how much it's grown!
Ella is progressing kind of... Haha! Her lungs have been an issue. They are continuing to not be able to inflate as much as they need to in the upper lobes. They have been doing a lot of respiratory therapy to help open up these lobes of her lungs and that seems to be helping. She is still on the ventilator and they are hoping to wean her off more tomorrow. They took it down a notch today but not a ton. Her CO2 and O2 levels are still not where they need to be which is a little concerning.
We were told today that the function of her heart is good. So that's positive! The pacing is not so good so it looks like Ella is probably getting a pace maker put in. They are waiting until Thursday to make this final decision, but she's been relying heavily on the external pace maker, so we are guessing it's a go. We are praying that God gives us a peace about this because it means another surgery will take place so her chest will be opened again and she'll be on the ventilator again... 😞 It feels like a pretty big step backward, but we know that it's what she needs to help keep her alive.
The nurse today was talking to me about the life of these kinds of kids and it made me so sad for Ella. He explained how this is not an ultimate fix for her. There are usually other issues that arise later on in life. Lots of questions flood my mind... Will she live a long life? Will she pass away as a child? Will I be able to handle that if that does happen? Will she ever get married? Will the other kids tease her? Will Eli be an only child and not experience the joy of having a sibling?... And so many more... The reality of her condition scares me but I have to remind myself that ultimately God is in control and has a plan for her. I just pray that He will prepare me and sustain me for whatever may come. It's easy to say that I trust God with her life but living that out can be a challenge. I am thankful that I have Matt and the support of others to help reel me in when my mind starts to doubt.
Please pray for Ella to get stronger. Her body is so little and has been taking a ton of hits. I wonder how much more it can take...
I miss home a lot too... The Ronald McDonald House has been great, but it's nothing like home. When you're here you're constantly around other people that are hurting too. There's been a lot of turn over of people already and I find myself jealous of the people that get to leave. I am ready to take our baby girl home or even just get to hold her or even just to see Matt hold her. I cannot wait for that day...
Thank you all for your continued encouragement and support. It has already been a wild ride and it feels like it's just the beginning.
Love,
Jillian
Today was a family-filled day! We had our brothers and sister-in-law in town as well as both sets of parents. Ella is one LOVED girl! We are so fortunate to have our family so close (or willing to drive!). Eli had so much fun playing with everyone. He is such a trooper. I am so glad that God made him so flexible with a go-with-the-flow kind of personality. It has made it much easier to have him down here with us.
Ella's swelling in her head has gone down a ton and it's nice to see her little face again. 😍 Once they took out the pic line (IV) in her scalp, the swelling has really gone down! We got to see her eyes quite a bit today too. I think they may be brown. Eli told us that his sister would be a redhead with brown eyes and so far he's right! She has more hair than Eli did at this point in his life! The night nurse said that the lipids that they put through her IVs make kids have luscious hair and even though she's far from luscious, I am impressed with how much it's grown!
We were told today that the function of her heart is good. So that's positive! The pacing is not so good so it looks like Ella is probably getting a pace maker put in. They are waiting until Thursday to make this final decision, but she's been relying heavily on the external pace maker, so we are guessing it's a go. We are praying that God gives us a peace about this because it means another surgery will take place so her chest will be opened again and she'll be on the ventilator again... 😞 It feels like a pretty big step backward, but we know that it's what she needs to help keep her alive.
The nurse today was talking to me about the life of these kinds of kids and it made me so sad for Ella. He explained how this is not an ultimate fix for her. There are usually other issues that arise later on in life. Lots of questions flood my mind... Will she live a long life? Will she pass away as a child? Will I be able to handle that if that does happen? Will she ever get married? Will the other kids tease her? Will Eli be an only child and not experience the joy of having a sibling?... And so many more... The reality of her condition scares me but I have to remind myself that ultimately God is in control and has a plan for her. I just pray that He will prepare me and sustain me for whatever may come. It's easy to say that I trust God with her life but living that out can be a challenge. I am thankful that I have Matt and the support of others to help reel me in when my mind starts to doubt.
Please pray for Ella to get stronger. Her body is so little and has been taking a ton of hits. I wonder how much more it can take...
I miss home a lot too... The Ronald McDonald House has been great, but it's nothing like home. When you're here you're constantly around other people that are hurting too. There's been a lot of turn over of people already and I find myself jealous of the people that get to leave. I am ready to take our baby girl home or even just get to hold her or even just to see Matt hold her. I cannot wait for that day...
Thank you all for your continued encouragement and support. It has already been a wild ride and it feels like it's just the beginning.
Love,
Jillian
Saturday, April 21, 2018
And... It's Back.
The doctors and nurses put this nasal cannula on her and she seemed to be doing better. But the blood gas numbers showed she needed the ventilator again. What an uphill battle this girl is fighting! Matt and I were disappointed at first but after seeing het numbers we are relieved that she's back on it. She's getting to rest!
They gave her more pain meds because she was so agitated. She seems better, or at least more comfortable.
She's definitely less puffy too!
We are expecting that she'll need a pace maker put in this week sometime but also know that God can do whatever he pleases and heal that part! We shall see. We will keep you posted!
Love,
Jillian
Ventilator... Again?
We just got to Ella's room and they are concerned with her lung function so now we may be getting back on the ventilator... pray that her CO2 and O2 levels get better.
I told Matt to prepare for a bad day because we had 2 good days in a row and I was unfortunately right. They're stopping feedings in case they need to intubate her again...
Feels like we may never get out of here...
Please pray for baby Ella and that we don't get discouraged.
-Jillian
Friday, April 20, 2018
Ella's Making Progress! + New Photos!
Hi everyone!
Sorry we took a day off from blogging, but not a ton has happened. She is continuing to be taken off of different meds and is still off of the ventilator! Yippee!
We have had a couple of bumps in the road, per usual, but overall we are taking good baby steps in the right direction.
So here are the updates:
-She is off the fetynol pain killer and is switched to a different one and she seems WAY more comfy.
-Ella is peeing a lot more on her own which is a good sign.
-She's been off the ventilator and has changed to a machine commonly called the "Bubble Machine" which is helping sustain the pressure in her lungs. You'll see in a picture below what it looks like on her face. She has been breathing on her own though!
-The clots in her neck are still not going away... So she's pretty puffy in her face. Sweet little thing has little bird legs and a pretty large head at the moment. They don't look like they should be on the same body!
-Ella's brain bleed has not progressed and is stable and the doctors are feeling good enough about it where they won't need to monitor it by ultrasound every day but rather every few days.
-Ella is getting 6mL of breast milk an hour! The day they took her off the ventilator, they removed the feeding tube from her nose to put in the bubble machine so she didn't eat that day, but they put in a new feeding tube via her mouth and are upping the milk intake pretty regularly! We were afraid she was not tolerating the milk well because she was excreting a lot through her chest tube, but they got it tested for something that starts with a "c" and it was negative so they are excited to keep the feedings up!
-The doctors have put Ella on a steroid to reduce the inflammation on her heart. They are hoping this will help get her heart to pace itself regularly without the need of a pace maker. I am nervous she'll need the pace maker to be put in because that would mean another surgery... It would feel like a big step backward even though it's not as invasive and sometimes kids with this heart defect need it for a short period of time and can get it removed at any time... She'd have to go back on the ventilator and all of that stuff so I am praying that we won't need that!
We have been so overwhelmed by all of the prayers, kind words, and financial support we've been receiving. We are truly blessed by all of you. I don't know how we would get through this without our God and the encouragement from you. THANK YOU!
Below are some pictures. I have tried to keep them "friendly" for everyone, but they do have a tiny bit of her chest incision and stitches so if you don't want to see that, I wouldn't scroll down 😀
Love,
Jillian
Sorry we took a day off from blogging, but not a ton has happened. She is continuing to be taken off of different meds and is still off of the ventilator! Yippee!
We have had a couple of bumps in the road, per usual, but overall we are taking good baby steps in the right direction.
So here are the updates:
-She is off the fetynol pain killer and is switched to a different one and she seems WAY more comfy.
-Ella is peeing a lot more on her own which is a good sign.
-She's been off the ventilator and has changed to a machine commonly called the "Bubble Machine" which is helping sustain the pressure in her lungs. You'll see in a picture below what it looks like on her face. She has been breathing on her own though!
-The clots in her neck are still not going away... So she's pretty puffy in her face. Sweet little thing has little bird legs and a pretty large head at the moment. They don't look like they should be on the same body!
-Ella's brain bleed has not progressed and is stable and the doctors are feeling good enough about it where they won't need to monitor it by ultrasound every day but rather every few days.
-Ella is getting 6mL of breast milk an hour! The day they took her off the ventilator, they removed the feeding tube from her nose to put in the bubble machine so she didn't eat that day, but they put in a new feeding tube via her mouth and are upping the milk intake pretty regularly! We were afraid she was not tolerating the milk well because she was excreting a lot through her chest tube, but they got it tested for something that starts with a "c" and it was negative so they are excited to keep the feedings up!
-The doctors have put Ella on a steroid to reduce the inflammation on her heart. They are hoping this will help get her heart to pace itself regularly without the need of a pace maker. I am nervous she'll need the pace maker to be put in because that would mean another surgery... It would feel like a big step backward even though it's not as invasive and sometimes kids with this heart defect need it for a short period of time and can get it removed at any time... She'd have to go back on the ventilator and all of that stuff so I am praying that we won't need that!
We have been so overwhelmed by all of the prayers, kind words, and financial support we've been receiving. We are truly blessed by all of you. I don't know how we would get through this without our God and the encouragement from you. THANK YOU!
Below are some pictures. I have tried to keep them "friendly" for everyone, but they do have a tiny bit of her chest incision and stitches so if you don't want to see that, I wouldn't scroll down 😀
Love,
Jillian
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| Mommy stroking Ella's head. She's a big fan. |
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| Mommy "snuggling" Ella. |
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| NO MORE VENTILATOR!!! |
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| Ella on the "Bubble Machine". This is her hardcore face. |
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| Daddy being goofy with Ella. |
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| Daddy is wrapped around little Ella's finger already. 💜 |
Thursday, April 19, 2018
Steps
Hi everyone,
This morning we got a text saying that Ella would be extubated which means the ventilator would be removed. It's an important step as she would soon be breathing on her own. We were excited to hear this and got ready for the day and headed to the hospital. We got there around 11 and learned that she was taken off the ventilator at 10:18. They explained that they will see how she does for the next day or so and put her back on if necessary but hopefully won't have to. Ella was awake and it was hard to see her uncomfortable and trying to cry and cough with only tiny sounds coming out. The nurses said that she most likely has a pretty sore throat from the ventilator and she will slowly get more vocal over the coming days. I imagine her mouth is very dry as well and she kept moving and sticking out her tongue while "blowing bubbles" which the nurses suction up, much like at the dentist. Her neck and head are also very large still from the swelling caused by the blood clot in her neck.
A little later, Dr. Watanabe came in and talked to us for a few minutes. He explained that her heart rhythm isn't exactly where they want it to be. They will monitor it over the next week and decide if she will need to have an internal pacemaker put it. We also learned that she has been on a pacemaker since her surgery last Monday, although an external one. This was all news to us somehow which probably seems strange. There are so many wires and tubes hooked up to her and so much "medical stuff" discussed with us that it was probably assumed by everyone that we knew about the external pacemaker that Ella has. It's not a big deal that we didn't know, just somewhat funny. Anyways, we drove back to the Ronald McDonald House feeling a little discouraged after hearing about the internal pacemaker news.
We stayed at the house for several hours and Eli was able to take a nap. We then packed up his things and loaded his and Becca's stuff into her car. We love having Eli down here with us of course (only made possible by Becca staying with us!) but it is also difficult logistically with everything going on. The plan is to have him stay up in Grass Valley with my family for a couple nights and then he'll come back down. We have learned to not really make plans these days though so we shall see what happens and also if we can go that long again without seeing him. We drove back to the hospital this evening and after seeing Ella for a bit, said goodbye to Becca and Eli. It was made easier because Eli was not sad and was looking forward to having "a slumber party with Grandma and Grandpa".
Jillian and I went back into Ella's room for a couple hours and were able to get answers to some questions we had thought of earlier regarding the pacemaker. The nurses showed us some wires that go into an incision below where she has the stitches from her heart surgery. The wires are connected to her heart and can be removed by just being pulled out when the time comes. We hadn't really noticed before because that area is usually covered. However, if it's determined in a week or so that she needs an internal pacemaker, they would have to open her back up and put that in. This would press rewind on the road to recovery but overall would be good for her once she is away from the safety of the hospital. The nurses explained that the pacemakers don't bother the patients at all and just need to have the battery changed every 5-7 years or so. We were reminded again that babies are not like adults that can be up and moving the very next day after heart surgery. It's all a long process which is not a surprise but still hard for us sometimes. Jillian and I have mentioned that it feels as though we go 1 step forward and 2 steps back some days. Overall, we know she is making progress even if it is more sloth-like and less cheetah-like. It's pretty strange that we have been down here for 2 weeks (it feels like months) and we haven't been further than 10 miles from the hospital during that time, haha.
We thank all of you for the continued overwhelming support and all of your prayers. A few things that I can think of right now
-Praise that Ella was able to get off the ventilator today
-Praise that her numbers with the hourly blood tests seem to be good
-Pray that she doesn't have to go back on the ventilator
-Pray that her heart rhythm becomes steady and she doesn't need an internal pacemaker
-Pray that we wouldn't allow our "What if?" thoughts surrounding the ventilator malfunction last week to bring us down and make us angry and that we would keep our eyes fixed on God and His will
-Continued prayer for the blood clot in her neck area to dissipate
-Ultimately, pray that God's Will be done and that we would be at peace with whatever that might be
-Matt
We stayed at the house for several hours and Eli was able to take a nap. We then packed up his things and loaded his and Becca's stuff into her car. We love having Eli down here with us of course (only made possible by Becca staying with us!) but it is also difficult logistically with everything going on. The plan is to have him stay up in Grass Valley with my family for a couple nights and then he'll come back down. We have learned to not really make plans these days though so we shall see what happens and also if we can go that long again without seeing him. We drove back to the hospital this evening and after seeing Ella for a bit, said goodbye to Becca and Eli. It was made easier because Eli was not sad and was looking forward to having "a slumber party with Grandma and Grandpa".
Jillian and I went back into Ella's room for a couple hours and were able to get answers to some questions we had thought of earlier regarding the pacemaker. The nurses showed us some wires that go into an incision below where she has the stitches from her heart surgery. The wires are connected to her heart and can be removed by just being pulled out when the time comes. We hadn't really noticed before because that area is usually covered. However, if it's determined in a week or so that she needs an internal pacemaker, they would have to open her back up and put that in. This would press rewind on the road to recovery but overall would be good for her once she is away from the safety of the hospital. The nurses explained that the pacemakers don't bother the patients at all and just need to have the battery changed every 5-7 years or so. We were reminded again that babies are not like adults that can be up and moving the very next day after heart surgery. It's all a long process which is not a surprise but still hard for us sometimes. Jillian and I have mentioned that it feels as though we go 1 step forward and 2 steps back some days. Overall, we know she is making progress even if it is more sloth-like and less cheetah-like. It's pretty strange that we have been down here for 2 weeks (it feels like months) and we haven't been further than 10 miles from the hospital during that time, haha.
We thank all of you for the continued overwhelming support and all of your prayers. A few things that I can think of right now
-Praise that Ella was able to get off the ventilator today
-Praise that her numbers with the hourly blood tests seem to be good
-Pray that she doesn't have to go back on the ventilator
-Pray that her heart rhythm becomes steady and she doesn't need an internal pacemaker
-Pray that we wouldn't allow our "What if?" thoughts surrounding the ventilator malfunction last week to bring us down and make us angry and that we would keep our eyes fixed on God and His will
-Continued prayer for the blood clot in her neck area to dissipate
-Ultimately, pray that God's Will be done and that we would be at peace with whatever that might be
-Matt
Tuesday, April 17, 2018
Strong Girl!
Hi Everyone!
Wow. Today was a completely different day than yesterday! Thank goodness, I don't know how much more baby girl could have tolerated.
Here's what we've accomplished today:
-She is breathing pretty well on her own (with the ventilator in still)
-She had her dressing removed from the chest closure. We are now looking at stitches instead of a bandage. Funny story: We saw there was a little bit of tissue coming out between one of the stitches and we were told it was a little bit of the fatty tissue. Matt started saying to Dr. Watanabe and Ashley that it looked like meat coming out, like something he'd see in The Walking Dead. HA!
-Ella has had a lot of changes done today (ultrasounds, IV pokes, blood draws, facial cleanings, moving her to her side, medicine changes, etc.) and has tolerated them all beautifully! She is usually a very sensitive little one, but today she has been a total CHAMP!
-SAT oxygen numbers are looking good!
-She'd get aggitated getting a few things done, but calmed down really well without needing more pain medication.
Here's what we've overheard from the nurses/doctors today:
"Numbers look ideal!"
"These are spectacular numbers!"
Our nurse thinks that Ella really likes her because of how well she's done today "Maybe she just likes me. Ha!"
"She's a strong girl! No boy would've responded that well!" HAHAHAHA! Preach it doctor!
As you can tell, MUCH better day today... so far. We've really learned to live in the moment here. We are thankful for such a good day and pray for a good night as well. They are hoping to take out the ventilator soon (maybe tomorrow! If things keep going the way they were today it's a definite possibility!) and I cannot wait for that day!!! Who would've thought that I would be looking forward to the day that she can cry? I am sure I will be eating my words soon. 😀
We were also called into a meeting today to talk about what happened with the ventilator on Wednesday morning. There wasn't a ton of information that was given to us yet, but I'm glad to hear that they pulled both of the ventilators that are that model off the floors. I just don't want anyone else to have to experience that...
Lastly, thank you for all of your prayers. I cannot say that enough. We are truly blessed by our community around us. I know that the Lord has big plans for our baby girl and I am already seeing so many blessings coming from this painful experience. Please pray for her respiratory rate to even out and to continue to be stable so that we can get that ventilator out!
Love to you all!!!
Jillian
Wow. Today was a completely different day than yesterday! Thank goodness, I don't know how much more baby girl could have tolerated.
Here's what we've accomplished today:
-She is breathing pretty well on her own (with the ventilator in still)
-She had her dressing removed from the chest closure. We are now looking at stitches instead of a bandage. Funny story: We saw there was a little bit of tissue coming out between one of the stitches and we were told it was a little bit of the fatty tissue. Matt started saying to Dr. Watanabe and Ashley that it looked like meat coming out, like something he'd see in The Walking Dead. HA!
-Ella has had a lot of changes done today (ultrasounds, IV pokes, blood draws, facial cleanings, moving her to her side, medicine changes, etc.) and has tolerated them all beautifully! She is usually a very sensitive little one, but today she has been a total CHAMP!
-SAT oxygen numbers are looking good!
-She'd get aggitated getting a few things done, but calmed down really well without needing more pain medication.
Here's what we've overheard from the nurses/doctors today:
"Numbers look ideal!"
"These are spectacular numbers!"
Our nurse thinks that Ella really likes her because of how well she's done today "Maybe she just likes me. Ha!"
"She's a strong girl! No boy would've responded that well!" HAHAHAHA! Preach it doctor!
As you can tell, MUCH better day today... so far. We've really learned to live in the moment here. We are thankful for such a good day and pray for a good night as well. They are hoping to take out the ventilator soon (maybe tomorrow! If things keep going the way they were today it's a definite possibility!) and I cannot wait for that day!!! Who would've thought that I would be looking forward to the day that she can cry? I am sure I will be eating my words soon. 😀
We were also called into a meeting today to talk about what happened with the ventilator on Wednesday morning. There wasn't a ton of information that was given to us yet, but I'm glad to hear that they pulled both of the ventilators that are that model off the floors. I just don't want anyone else to have to experience that...
Lastly, thank you for all of your prayers. I cannot say that enough. We are truly blessed by our community around us. I know that the Lord has big plans for our baby girl and I am already seeing so many blessings coming from this painful experience. Please pray for her respiratory rate to even out and to continue to be stable so that we can get that ventilator out!
Love to you all!!!
Jillian
Monday, April 16, 2018
Ups and Downs
Today was a bit rockier during the morning and early afternoon. We knew something was off as soon as we walked into her room. She had 3 nurses, the doctor, and the respiratory therapist in there. The doctor told us she would be sitting in there to observe her today and they called the on-call doctor to help with the rest of the floor. Quickly we knew something was up.
Ella's SAT oxygen levels and blood pressure were all over the place. We were able to be with her for a while this morning but seemed to be stressing her out a bit. She was very awake and alert but seemed super uncomfortable. It kills us to see Ella crying with no sound coming out due to the ventilator. These SAT levels have evened out a bit since earlier this evening.
The ventilator removal progression seems to have slowed due to the different issues they were taking care of today... They originally said it would be out tomorrow, but we highly doubt that'll happen. It will be so nice when it does though! We will have to celebrate that night!!!
Dr. Watanabe told us that the clot in her neck area could take 5-7 days to dissipate. They would give her an anti-coagulating medication which would probably cause the clot to disappear quicker but they can't because of the bleeding in her head that we mentioned yesterday. He also mentioned that the neck is an unusual place to get a clot because it is such a large vessel. Of course! Our little girl is a unique little thing already! Her poor little face looks like a marshmallow because of the swelling around her neck.
Ella started to get better and stabilize more throughout the day. It was so sad to see her so irritated earlier today. Ashley, the surgeon's assistant, sat with us in Ella's room for a while today. She was so sweet to make sure that Ella was doing ok. She checked over Ella's numbers and asked the nurses a lot of medical questions that we wouldn't know the answers to.
We left feeling better about her condition than we did the majority of the day. Ella has definitely kept the team busy today!!!
Tonight as we were driving home we saw a rainbow. God reminded us of His promises. 💗
-Matt & Jillian
Sunday, April 15, 2018
Good Progress Today!
Hi everyone,
Today I got to sit in Ella's room a lot and see how the nurses took care of her. We haven't gone into her room a ton because we didn't want to be in the way, but today I sat in the back and watched and listened to what Ella experiences every day.
We have quite a few updates:
-Ella had a brain bleed yesterday and it was categorized as a grade two bleed but has unfortunately gone up to a grade three. We don't want it to get any larger or it has potential for brain damage... (I know... just add it to the list 😊) Also, when the daytime doctor arrived this morning, he noticed that she has swelling in her cheeks and neck that wasn't there yesterday. We had an ultrasound done today and found that this swelling is due to a blood clot near her IVs. They decided to take out two of her IVs this evening. One in her neck and one that was in her armpit. They are hoping that by removing these, the blood clots will be able to move and break apart on their own. They don't want to give her any blood thinners because of the bleeding in the brain. So please pray for this to work as we hope.
-Ella has been getting weaned off of the ventilator! The doctor said that she is setting herself up nicely to have it removed on Tuesday! We have learned that all of the dates that are given to us for different things are flexible and depend on her condition, so it may not actually be on Tuesday, but it would be amazing if it was! I am so excited to see her face a little more and kiss her little lips and nose again. It was sad to see her sad and cry but no sound come out. Once this is out, I'm sure she will be letting us know when she's upset! She's a little spitfire!
-Her urine output has improved which is going to help with her swelling. They upped her diuretic today and she did great! It was so weird hearing that she was going on Lasix because that's what we gave to Eli for his heart for the first year of his life. It was almost as if we forgot about that! Funny how things trigger memories.
-The nurses are now giving Ella 1mL of breast milk an hour!!! She has been responding well to this! It is a teeny amount, but I am just excited that something that I am doing (pumping) is helping her!
-The amount of the painkiller that they've been giving to her has been cut in half so she's a lot more alert which has been good to see. Matt and I were able to see her eyes a lot more and have her grab our fingers more today. It was sweet to see her eyes!!!
-Ella's left lung has had a little bit of a collapse so they removed the left chest tube to help make more room for the lung to expand.
-Her liver numbers are stabilizing and getting better all of the time!!!
Lots going on, but not all bad! The nurses were really happy with the progress she's made today. We have taken little steps in the right direction! Please pray for the blood in the brain to subside, the clots to remove themselves, and for Ella's oxygen levels to improve so that the swelling goes down.
We are thankful for all of our prayer warriors out there! God is doing amazing things through our little girl already. We have seen light in the midst of darkness for sure! We can't wait to see what else He has in store for her!!💜
Today I got to sit in Ella's room a lot and see how the nurses took care of her. We haven't gone into her room a ton because we didn't want to be in the way, but today I sat in the back and watched and listened to what Ella experiences every day.
We have quite a few updates:
-Ella had a brain bleed yesterday and it was categorized as a grade two bleed but has unfortunately gone up to a grade three. We don't want it to get any larger or it has potential for brain damage... (I know... just add it to the list 😊) Also, when the daytime doctor arrived this morning, he noticed that she has swelling in her cheeks and neck that wasn't there yesterday. We had an ultrasound done today and found that this swelling is due to a blood clot near her IVs. They decided to take out two of her IVs this evening. One in her neck and one that was in her armpit. They are hoping that by removing these, the blood clots will be able to move and break apart on their own. They don't want to give her any blood thinners because of the bleeding in the brain. So please pray for this to work as we hope.
-Ella has been getting weaned off of the ventilator! The doctor said that she is setting herself up nicely to have it removed on Tuesday! We have learned that all of the dates that are given to us for different things are flexible and depend on her condition, so it may not actually be on Tuesday, but it would be amazing if it was! I am so excited to see her face a little more and kiss her little lips and nose again. It was sad to see her sad and cry but no sound come out. Once this is out, I'm sure she will be letting us know when she's upset! She's a little spitfire!
-Her urine output has improved which is going to help with her swelling. They upped her diuretic today and she did great! It was so weird hearing that she was going on Lasix because that's what we gave to Eli for his heart for the first year of his life. It was almost as if we forgot about that! Funny how things trigger memories.
-The nurses are now giving Ella 1mL of breast milk an hour!!! She has been responding well to this! It is a teeny amount, but I am just excited that something that I am doing (pumping) is helping her!
-The amount of the painkiller that they've been giving to her has been cut in half so she's a lot more alert which has been good to see. Matt and I were able to see her eyes a lot more and have her grab our fingers more today. It was sweet to see her eyes!!!
-Ella's left lung has had a little bit of a collapse so they removed the left chest tube to help make more room for the lung to expand.
-Her liver numbers are stabilizing and getting better all of the time!!!
Lots going on, but not all bad! The nurses were really happy with the progress she's made today. We have taken little steps in the right direction! Please pray for the blood in the brain to subside, the clots to remove themselves, and for Ella's oxygen levels to improve so that the swelling goes down.
We are thankful for all of our prayer warriors out there! God is doing amazing things through our little girl already. We have seen light in the midst of darkness for sure! We can't wait to see what else He has in store for her!!💜
Saturday, April 14, 2018
The Chest is Closed!
Hi all!
Sorry it took me a while to update you on Ella's chest closure...
Ella was a champ and the surgeon, Dr. Watanabe, was able to close her chest fully last night. They removed the clip in her shunt and her body seems to be responding well. This doesn't necessarily mean that it won't be re-opened if the need arises, but for now it is closed!
She went through the whole night being monitored closely by her nurses, surgeon, and doctors and seems to be doing well!
We arrived to the hospital this afternoon and checked in on Ella and she is moving her hands, feet, and lips again! It is a really weird thing to see your baby paralyzed... So this movement is so encouraging. I cannot wait to hold her feet and bump her bum again!
Ella's liver enzymes have continued to fluctuate, but are overall better than yesterday.
As you can tell, the tone of this post is much more positive. God has gifted us with the progress I yearned for! Thank you all for praying for that. I am so grateful for your intercession on our behalf. I assume the blog posts will probably slow down for a bit as we wait for her to recover, but I will keep you posted as much as I can!
-Jillian
Sorry it took me a while to update you on Ella's chest closure...
Ella was a champ and the surgeon, Dr. Watanabe, was able to close her chest fully last night. They removed the clip in her shunt and her body seems to be responding well. This doesn't necessarily mean that it won't be re-opened if the need arises, but for now it is closed!
She went through the whole night being monitored closely by her nurses, surgeon, and doctors and seems to be doing well!
We arrived to the hospital this afternoon and checked in on Ella and she is moving her hands, feet, and lips again! It is a really weird thing to see your baby paralyzed... So this movement is so encouraging. I cannot wait to hold her feet and bump her bum again!
Ella's liver enzymes have continued to fluctuate, but are overall better than yesterday.
As you can tell, the tone of this post is much more positive. God has gifted us with the progress I yearned for! Thank you all for praying for that. I am so grateful for your intercession on our behalf. I assume the blog posts will probably slow down for a bit as we wait for her to recover, but I will keep you posted as much as I can!
-Jillian
Friday, April 13, 2018
Matt's Facebook Post
I don't know if I've mentioned it enough, but I married up! 😀 Check out the post that Matt wrote on Facebook last night...
Baby Ella turned 1 week old today although it seems much longer than that. She has gone through far more in the "medical world" during this time than I have gone through in my entire life. It sometimes feels like we have been living in a movie or medical drama tv show with so many ups and downs. I've never changed her diaper, never been woken up from her crying, never rocked her, never held her, never seen her eyes but for a few brief moments...but I love her with all my heart and I know that God has held her in His hands and has taken care of her through the incredible doctors and nurses.
The past few days I've thanked God "just" (simply) that she is alive which may seem like a very simple prayer. "Just"...it's not really "just" at all is it? As if having life is an assumption? I should thank God every single day that I am alive and yet I rarely do. 'Life is a gift', a phrase I've often heard but rarely grasped. It is something that I have taken for granted but now have a changing perspective on since Ella was born. I don't deserve to even be here in the first place. I deserve death and eternal condemnation because I am a sinner. It is by God's grace that I draw breath and don't perish this instant. It is through His Son's death on the cross and resurrection that I have been saved from that eternal condemnation. A cross Jesus did nothing to deserve. A cross meant for me.
Of course it would probably be easy to get angry and wallow in sorrow and negativity with various thoughts-Why did this happen to us? What did Ella do to deserve this? Why do these other parents get to take their babies home from the hospital and we don't? Why can't we feed her, hold her, snuggle her? Why did the ventilator malfunction happen? Instead, God has allowed me to see the positive and His guiding hand through all of this-God, thank you for allowing Jillian and I to be parents to this amazing girl. Thank you for the overwhelming support and prayers from countless family members, friends, acquaintances and strangers. Thank you that the doctors and nurses found the issue with her heart months before she was born. Thank you that it is 2018 and not 30+ years ago when these life-saving surgeries didn't exist. Thank you that I've been able to kiss her, put my finger into her little hand, talk to her and sing to her. Thank you that a doctor was a few feet from Ella when the ventilator malfunctioned and was able to start compressions right away. Thank you for your comfort and peace which truly surpasses all my understanding.
God has a plan through all of this, I have no doubt about that. I have no idea what the next year will look like, the next month, the next week, the next day, the next hour, the next minute or even second. But God does. And that is more than sufficient for me.
Surgery is Happening Now!
This morning Matt and Eli were able to go on a Daddy and Eli Adventure Day! They went to Fairy Tale Town and had a picnic lunch in the park. I am so thankful they had that time together. Matt apparently wore Eli out because he said that Eli fell asleep on the car ride back to the Ronald McDonald House.
My mom and I went to the hospital to spend time with Ella, and by spending time, I mean sit in the waiting room 😀. I continued to feel discouraged and overwhelmed by everything that Ella is enduring. The weight of our current situation washed over me and I couldn't get out of my funk. My mom could tell I was struggling so we sat together and talked. We realized that we haven't done that in a long time, just her and I. It was a gift in the midst of my sadness.
After a little while, I went and talked with Ashley, the surgeon's assistant. She always makes me feel better about Ella's condition. I am so so so so so so so thankful for her. She explained to me that Ella was doing pretty well and everything that she is experiencing is relatively normal. There was just one thing that is abnormal...I was told this morning that Ella's liver enzymes were high and they were a little worried about it. There are a few reasons that this could be happening... damage to the liver from the compressions she needed a few mornings ago, the heart not functioning properly can lead to liver issues, and medication side effects (but the only med that they have given her that would effect the liver is Tylenol). They have found that Ella is really sensitive to anything they do so they think that it may have been a combination of the things. So they are going to continue to monitor this.
There were a lot of nurses in Ella's room today. They did a complete change out of her IVs. I'm not totally sure why they do that, but after seeing the picture of the wires from the last post, you can imagine that would take a long time! Ella is definitely keeping the nurses busy. I am so thankful for them.
This afternoon they decided that she is stable enough to do either a semi or complete closure of her chest!!! So Dr. Watanabe is doing that as I type. They started the surgery at 3:30pm in her room. It's amazing that they don't have to take her to an operating room. The surgeon said they want to also remove the clip that they put on yesterday and see how her body responds. They want to do this so that when she gets bigger in a month they won't have to go back in and remove the clip to get more blood to her lungs. It's a little confusing, I know 😊. The semi or full closure means that she is stabilizing and we are getting closer to being able to be in the room with her and getting to bond with her again. I'll write a follow up post on how the surgery went.
Praise the Lord she will not remember any of this. She's already gone through so much and this is still the beginning. Our baby is a fighter!!!
My mom and I went to the hospital to spend time with Ella, and by spending time, I mean sit in the waiting room 😀. I continued to feel discouraged and overwhelmed by everything that Ella is enduring. The weight of our current situation washed over me and I couldn't get out of my funk. My mom could tell I was struggling so we sat together and talked. We realized that we haven't done that in a long time, just her and I. It was a gift in the midst of my sadness.
After a little while, I went and talked with Ashley, the surgeon's assistant. She always makes me feel better about Ella's condition. I am so so so so so so so thankful for her. She explained to me that Ella was doing pretty well and everything that she is experiencing is relatively normal. There was just one thing that is abnormal...I was told this morning that Ella's liver enzymes were high and they were a little worried about it. There are a few reasons that this could be happening... damage to the liver from the compressions she needed a few mornings ago, the heart not functioning properly can lead to liver issues, and medication side effects (but the only med that they have given her that would effect the liver is Tylenol). They have found that Ella is really sensitive to anything they do so they think that it may have been a combination of the things. So they are going to continue to monitor this.
There were a lot of nurses in Ella's room today. They did a complete change out of her IVs. I'm not totally sure why they do that, but after seeing the picture of the wires from the last post, you can imagine that would take a long time! Ella is definitely keeping the nurses busy. I am so thankful for them.
This afternoon they decided that she is stable enough to do either a semi or complete closure of her chest!!! So Dr. Watanabe is doing that as I type. They started the surgery at 3:30pm in her room. It's amazing that they don't have to take her to an operating room. The surgeon said they want to also remove the clip that they put on yesterday and see how her body responds. They want to do this so that when she gets bigger in a month they won't have to go back in and remove the clip to get more blood to her lungs. It's a little confusing, I know 😊. The semi or full closure means that she is stabilizing and we are getting closer to being able to be in the room with her and getting to bond with her again. I'll write a follow up post on how the surgery went.
Praise the Lord she will not remember any of this. She's already gone through so much and this is still the beginning. Our baby is a fighter!!!
Thursday, April 12, 2018
Things Are Going Well
Hopefully this will be the last post of the day because that'll mean that everything is going well! 🙏
So not much has changed since the last one, but we are feeling optimistic.
*Her blood pressure/heart rate are stable and are in the high 60s and 60 and above is the goal. This is really good because yesterday her numbers were averaging 53-55. This is proving that the procedure they did this morning has been really beneficial. She hasn't had to be given a ton of the medication that helped stabilize this, it's stabilizing it on it's own!
*Dr. Nasirof said that we are probably going to close the chest on Saturday.
*The nurse that was on today said that she will be handing Ella over as a totally different kid to the night shift tonight because she's doing so much better.
*The doctors put her on a diuretic, which is a good sign. They were nervous to do so earlier because it would remove liquid volume which she needed to help keep her blood pressure/heart rate up.
We need to pray for a calm night (I guess last night was a bit rough). We also need to pray for her to pee more so that they can see that the kidneys are working correctly and so it would remove excess fluids.
I am adding a photo that I took a couple days ago of Ella. If you don't want to see her hooked up to a bunch of stuff, don't scroll down too much. You can barely see her but I wanted to give you an idea of what we see when we look at her now-a-days...
So not much has changed since the last one, but we are feeling optimistic.
*Her blood pressure/heart rate are stable and are in the high 60s and 60 and above is the goal. This is really good because yesterday her numbers were averaging 53-55. This is proving that the procedure they did this morning has been really beneficial. She hasn't had to be given a ton of the medication that helped stabilize this, it's stabilizing it on it's own!
*Dr. Nasirof said that we are probably going to close the chest on Saturday.
*The nurse that was on today said that she will be handing Ella over as a totally different kid to the night shift tonight because she's doing so much better.
*The doctors put her on a diuretic, which is a good sign. They were nervous to do so earlier because it would remove liquid volume which she needed to help keep her blood pressure/heart rate up.
We need to pray for a calm night (I guess last night was a bit rough). We also need to pray for her to pee more so that they can see that the kidneys are working correctly and so it would remove excess fluids.
I am adding a photo that I took a couple days ago of Ella. If you don't want to see her hooked up to a bunch of stuff, don't scroll down too much. You can barely see her but I wanted to give you an idea of what we see when we look at her now-a-days...
Another Procedure
This morning around 6:30ish we received a call from a nurse explaining that they need to do a procedure to "clip" the shunt. My understanding of this is that it closes the shunt a little more to balance out the blood flow to the lungs. The oxygen level that they need to be giving her is down to 23%, so that's good!
We took a slow morning/afternoon and arrived at the hospital around 2:30 today. I went in to Ella's room and it just felt a little different... Her heart rate/blood pressure is much better after the procedure, but I feel like there's just going to be more and more complications... Again, I just want some sort of progress but it doesn't feel like I will see that any time soon...
The Lord is really teaching me to wait on Him. That seems like all we've done for the last five months... wait. I'm trying not to get impatient, but it's tough.
Please pray for some sort of encouraging news.
💜 Jillian
We took a slow morning/afternoon and arrived at the hospital around 2:30 today. I went in to Ella's room and it just felt a little different... Her heart rate/blood pressure is much better after the procedure, but I feel like there's just going to be more and more complications... Again, I just want some sort of progress but it doesn't feel like I will see that any time soon...
The Lord is really teaching me to wait on Him. That seems like all we've done for the last five months... wait. I'm trying not to get impatient, but it's tough.
Please pray for some sort of encouraging news.
💜 Jillian
Wednesday, April 11, 2018
Silver Linings
Thank you all for praying for Ella. Today was a day like none other. We were tried in ways that we could never have imagined. Praise the Lord that He never left us.
Ella had a procedure done called a chest flush this afternoon. Essentially, they removed any excess fluids/tissues from her chest. They were also able to see that her lung had taken on some fluid so they removed that as well. She has been getting a little bit too much blood to her lungs from the shunt that they put in during Monday's procedure. The surgeons thought that they may need to adjust the shunt, but they decided against it later.
Apparently before the procedure was done, Ella had another little "episode", as Dr. Watanabe (the other primary surgeon) calls it, where her heart rate dropped. Because of the episode that Ella endured from the ventilator, we were told that, unfortunately, she may have more of these kinds of episodes. We are praying that God protects her from this.
After the procedure, they decided to give Ella the medication that keeps her sedated in a drip IV, whereas before it was just through a bolus and given just whenever needed. They're hoping to slowly wean her off of all of the medications.
We talked with Ashley, the surgeon's assistant, for a while this evening. She is amazing. I know I keep saying that about every person that takes care of Ella but it's true! Ashley said how she started receiving texts this morning about what happened to Ella and told us that she said to herself, "No! This can't be happening to her, she is too perfect!" We think so too 😉. She also explained how Ella's condition yesterday before the incident was a "rock star condition", and was rare. But now that she's experienced some set backs, her condition is more common (and I said, "or rocky, instead of rock star").
I then asked Ashley for things that I should ask you all to pray for and she said pray for Ella to have a calm night and that her lung/circulatory system blood flow would balance out as it needs to. She is also pretty swollen still and taking on lots of fluids and we want her to excrete more of them.
Ashley then said to tell you all that there were some silver linings that deserve praise from God that happened during the ventilator malfunction. First, the ICU doctor sat in Ella's room all night, so he was right there when her heart rate dropped and was able to step in and do compressions quickly. The doctors are often found in the halls rather than in the actual rooms. I believe this helped save her from her heart stopping completely. Praise the Lord!!! She also said another positive thing that happened was that Dr. Nasirof (the surgeon) was getting ready to leave for his job at Stanford so he was already dressed and awake and was able to get to the hospital to help Ella in 2 minutes. I love that she told us to make sure to point out to you all that there were good things that happened in the midst of the horror. She called these "a God thing". And it's true, we could've lost her had these two things not happened.
Dr. Nasirof will be sleeping at the hospital to keep a careful eye on Ella tonight. Can you believe that? I don't know how we will ever be able to thank these doctors and nurses enough.
We felt at peace when we said goodnight to our little girl tonight and know she's in the care of some incredible people. Matt gave Ella a kiss on her head before we left. I had him do it again because it was so sweet and I needed a picture of it! We praise God that there are people that value life so much that they would devote their lives to saving those that look like they have no chance. Keep praying, we are far from holding our baby in our arms, but each day we continue to get a little closer.
We will find out in the morning if Ella will be able to have the surgery to get her chest closed tomorrow afternoon or if it will be at a later time. We pray for discernment and wisdom for the doctors.
Love to you all,
Matt and Jillian
Ella had a procedure done called a chest flush this afternoon. Essentially, they removed any excess fluids/tissues from her chest. They were also able to see that her lung had taken on some fluid so they removed that as well. She has been getting a little bit too much blood to her lungs from the shunt that they put in during Monday's procedure. The surgeons thought that they may need to adjust the shunt, but they decided against it later.
Apparently before the procedure was done, Ella had another little "episode", as Dr. Watanabe (the other primary surgeon) calls it, where her heart rate dropped. Because of the episode that Ella endured from the ventilator, we were told that, unfortunately, she may have more of these kinds of episodes. We are praying that God protects her from this.
After the procedure, they decided to give Ella the medication that keeps her sedated in a drip IV, whereas before it was just through a bolus and given just whenever needed. They're hoping to slowly wean her off of all of the medications.
We talked with Ashley, the surgeon's assistant, for a while this evening. She is amazing. I know I keep saying that about every person that takes care of Ella but it's true! Ashley said how she started receiving texts this morning about what happened to Ella and told us that she said to herself, "No! This can't be happening to her, she is too perfect!" We think so too 😉. She also explained how Ella's condition yesterday before the incident was a "rock star condition", and was rare. But now that she's experienced some set backs, her condition is more common (and I said, "or rocky, instead of rock star").
I then asked Ashley for things that I should ask you all to pray for and she said pray for Ella to have a calm night and that her lung/circulatory system blood flow would balance out as it needs to. She is also pretty swollen still and taking on lots of fluids and we want her to excrete more of them.
Ashley then said to tell you all that there were some silver linings that deserve praise from God that happened during the ventilator malfunction. First, the ICU doctor sat in Ella's room all night, so he was right there when her heart rate dropped and was able to step in and do compressions quickly. The doctors are often found in the halls rather than in the actual rooms. I believe this helped save her from her heart stopping completely. Praise the Lord!!! She also said another positive thing that happened was that Dr. Nasirof (the surgeon) was getting ready to leave for his job at Stanford so he was already dressed and awake and was able to get to the hospital to help Ella in 2 minutes. I love that she told us to make sure to point out to you all that there were good things that happened in the midst of the horror. She called these "a God thing". And it's true, we could've lost her had these two things not happened.
Dr. Nasirof will be sleeping at the hospital to keep a careful eye on Ella tonight. Can you believe that? I don't know how we will ever be able to thank these doctors and nurses enough.
We felt at peace when we said goodnight to our little girl tonight and know she's in the care of some incredible people. Matt gave Ella a kiss on her head before we left. I had him do it again because it was so sweet and I needed a picture of it! We praise God that there are people that value life so much that they would devote their lives to saving those that look like they have no chance. Keep praying, we are far from holding our baby in our arms, but each day we continue to get a little closer.
We will find out in the morning if Ella will be able to have the surgery to get her chest closed tomorrow afternoon or if it will be at a later time. We pray for discernment and wisdom for the doctors.
Love to you all,
Matt and Jillian
We Got a Call...
We almost lost Ella this morning.
We received a call at 4:02 am from the hospital saying that we need to get down there because Ella's status has changed. We quickly got up and ran out the door to our car.
Not knowing anything, the drive to the hospital left us with every thought imaginable running through our minds. We pulled into the parking garage at 4:14 am. We walked quickly past the security check in point and told him "We don't have time to check in, we just got a call about our daughter!--Our last name is Waechter!--She's in room 3706!" We entered the elevator and went up to the third floor. We walked into the PICU hall to what looked like a movie scene... Nurses, doctors, surgeons, respiratory therapists, everyone, surrounding Ella's room (10-12 people in all). The surgeon Dr. Nasirof approached us and said immediately, "She's alright now." I dropped to the floor and started crying. The nurses escorted us to the quiet room down the hall where the Dr. would tell us what happened. After a few minutes, Dr. Nasirof came in and told us the ventilator she was on switched out of a certain mode somehow seemingly on its own which caused the issue. That was all the surgeon said.
We sat there, dumbfounded. The nurse came in and told us the ventilator malfunction would be "heavily investigated". She then asked if we needed anything and the first thing that came into mind was a breast pump. I hadn't pumped in a couple hours and on top of the emotional pain we were experiencing, I was experiencing physical pain too. Asking for that kind of thing lightened the mood a little.
Around 4:30am we were told that Ella was stable at that point and would be closely watched today and that a doctor would come explain more to us as soon as possible. In the meantime, there was a "spiritual chaplain" who was called due to standard protocol that came in and talked to us for about 15 minutes and then left. At some point we recalled a song we sing at our church called "He Will Hold Me Fast". I found it on my phone and we listened to it, finding comfort in the words and the knowledge of God's love, compassion and grace. We were antsy to hear about Ellas's condition but also felt God's overwhelming peace. Finally, after waiting for what seemed like ages to hear more about Ella, I walked out of the quiet room around 6:30am and towards her room. By this time, many of the people had left and there were two nurses, a doctor, and the respiratory therapist remaining. One of the nurses saw me standing outside of Ella's room and told me I could come in. I went to go get Matt from the quiet room and when we returned we talked with the doctor. We learned that Ella's heart rate dropped from her normal 160-something to 90-something around 3:42am. They had to do chest compressions for about 15 minutes to keep her heart beating and blood flowing through her little body. They figured out the drop in heart rate was due to the ventilator and switched it out with a different one. He also told us that they would be monitoring her extra carefully today as they had been all night.
I was able to touch her little head and tell her I loved her. Then we felt like we should stay out of the way and decided to leave.
Thankfully, we prepared for something like this to happen when Eli was staying with us as my mom was in our room as well and stayed behind with him at the Ronald McDonald House. We also called the Waechters and texted my dad to let them know we were called and were going to the hospital.
While we were about to exit the hospital, Jerry and Linda walked in the doors. We all left together and came back to our room at the Ronald McDonald House.
Matt and I took a short nap after a while and received a cal around 10:45am that updated us on Ella's condition. The nurse told us that she has been stable since this morning but is taking on too many fluids still but they hope they are able to close the chest tomorrow.
Reflecting back on what we experienced this morning has made us very thankful for the Lord's hand in this all. Machines may fail, but He never does. He has the ultimate power over everything. We felt like we had just been in a dramatic movie, but praise the Lord she's ok. Matt and I talked about how we wouldn't believe it if someone would've told us five months ago we would experience this. So crazy.
We could've lost our baby girl this morning, but by God's grace we didn't. Thank you for your continued prayers. Please pray for Ella's fluid on-take levels to lessen and that they would be able to take her off more of the medicines.
We received a call at 4:02 am from the hospital saying that we need to get down there because Ella's status has changed. We quickly got up and ran out the door to our car.
Not knowing anything, the drive to the hospital left us with every thought imaginable running through our minds. We pulled into the parking garage at 4:14 am. We walked quickly past the security check in point and told him "We don't have time to check in, we just got a call about our daughter!--Our last name is Waechter!--She's in room 3706!" We entered the elevator and went up to the third floor. We walked into the PICU hall to what looked like a movie scene... Nurses, doctors, surgeons, respiratory therapists, everyone, surrounding Ella's room (10-12 people in all). The surgeon Dr. Nasirof approached us and said immediately, "She's alright now." I dropped to the floor and started crying. The nurses escorted us to the quiet room down the hall where the Dr. would tell us what happened. After a few minutes, Dr. Nasirof came in and told us the ventilator she was on switched out of a certain mode somehow seemingly on its own which caused the issue. That was all the surgeon said.
We sat there, dumbfounded. The nurse came in and told us the ventilator malfunction would be "heavily investigated". She then asked if we needed anything and the first thing that came into mind was a breast pump. I hadn't pumped in a couple hours and on top of the emotional pain we were experiencing, I was experiencing physical pain too. Asking for that kind of thing lightened the mood a little.
Around 4:30am we were told that Ella was stable at that point and would be closely watched today and that a doctor would come explain more to us as soon as possible. In the meantime, there was a "spiritual chaplain" who was called due to standard protocol that came in and talked to us for about 15 minutes and then left. At some point we recalled a song we sing at our church called "He Will Hold Me Fast". I found it on my phone and we listened to it, finding comfort in the words and the knowledge of God's love, compassion and grace. We were antsy to hear about Ellas's condition but also felt God's overwhelming peace. Finally, after waiting for what seemed like ages to hear more about Ella, I walked out of the quiet room around 6:30am and towards her room. By this time, many of the people had left and there were two nurses, a doctor, and the respiratory therapist remaining. One of the nurses saw me standing outside of Ella's room and told me I could come in. I went to go get Matt from the quiet room and when we returned we talked with the doctor. We learned that Ella's heart rate dropped from her normal 160-something to 90-something around 3:42am. They had to do chest compressions for about 15 minutes to keep her heart beating and blood flowing through her little body. They figured out the drop in heart rate was due to the ventilator and switched it out with a different one. He also told us that they would be monitoring her extra carefully today as they had been all night.
I was able to touch her little head and tell her I loved her. Then we felt like we should stay out of the way and decided to leave.
Thankfully, we prepared for something like this to happen when Eli was staying with us as my mom was in our room as well and stayed behind with him at the Ronald McDonald House. We also called the Waechters and texted my dad to let them know we were called and were going to the hospital.
While we were about to exit the hospital, Jerry and Linda walked in the doors. We all left together and came back to our room at the Ronald McDonald House.
Matt and I took a short nap after a while and received a cal around 10:45am that updated us on Ella's condition. The nurse told us that she has been stable since this morning but is taking on too many fluids still but they hope they are able to close the chest tomorrow.
Reflecting back on what we experienced this morning has made us very thankful for the Lord's hand in this all. Machines may fail, but He never does. He has the ultimate power over everything. We felt like we had just been in a dramatic movie, but praise the Lord she's ok. Matt and I talked about how we wouldn't believe it if someone would've told us five months ago we would experience this. So crazy.
We could've lost our baby girl this morning, but by God's grace we didn't. Thank you for your continued prayers. Please pray for Ella's fluid on-take levels to lessen and that they would be able to take her off more of the medicines.
Tuesday, April 10, 2018
Ella's Numbers
Please pray that Ella's numbers on everything will continue to be normal overnight. Everything has pretty much stayed the same as earlier. The doctors and nurses have been great. I just wish we could hear some good news instead of "this is normal".
We went to say goodnight to her and it was a little unsettling... Just seeing her laying there is so hard. I wish I could switch places with her so she wouldn't have to go through all of this.
Not sure if the closing of her chest will be tomorrow morning. Things need to stay normal and/or improve.
Matt and I are hanging in there. We are happy to have Eli with us. He's such a joy to have around and a good distraction, especially for Matt. I am feeling a little down tonight after our visit, but I just need to pray and give it to the Lord and I'll feel better. 😊
Prayer Request: Pray that God would help her blood pressure go up without the aid of medication. Pray for her excess chest liquids to lower. Pray that there will be some good news.
We went to say goodnight to her and it was a little unsettling... Just seeing her laying there is so hard. I wish I could switch places with her so she wouldn't have to go through all of this.
Not sure if the closing of her chest will be tomorrow morning. Things need to stay normal and/or improve.
Matt and I are hanging in there. We are happy to have Eli with us. He's such a joy to have around and a good distraction, especially for Matt. I am feeling a little down tonight after our visit, but I just need to pray and give it to the Lord and I'll feel better. 😊
Prayer Request: Pray that God would help her blood pressure go up without the aid of medication. Pray for her excess chest liquids to lower. Pray that there will be some good news.
Day 2 Post-Op
This morning Matt and I took it easy and arrived at the hospital around 11. We got an update from the nurses saying that things went well last night. They are still trying to lower the percent of oxygen that she is needing from the machine, but it is down to 40% from the scary 80% yesterday, so that's progress! They are looking for her blood pressure to get better because right now it is low. I was told this is relatively normal because her circulatory system is still trying to adjust to being a single ventricle heart, not a double one like we all have. This isn't ideal, but I guess it's pretty common. We are also looking for her chest to produce less excess fluids. They said that this is due to the bypass machine and the reaction the body has to it. So it's pretty normal, but that's something that they are closely monitoring. So if you could pray for all of those things to get better, that would be amazing!
If things continue to go well and progress, her chest will remain open until tomorrow morning at 7:30am. They will turn her PICU room into an operating room and the surgeon will be sewing her up! I am not going to lie, that will be a huge relief. It's a little unnerving seeing the movement of her heart beating in her chest. I am glad I am short because I can't see into it very well! 😊 They have a kind of sticker that covers her heart that is a semi-transparent yellow-brownish color, so you can't really see too much of what's inside.
I have gotten a lot more brave to be around her today. I was able to hold her hand for a while until she got the hiccups and totally freaked me out haha! 😊 The nurses were making sure it wasn't a seizure but the surgeon's assistant told us that they were the hiccups.
I will update more later if something comes up, but right now we are just waiting around. We will get to see Eli tonight which we are VERY excited about! He will be staying with us at the Ronald McDonald House along with my mom. We would love for him to stay with us all of the time, but if we were to get a call in the middle of the night where we'd need to leave to get to the hospital quickly, we want to make sure we are able to do so. Hopefully he wakes up from his nap soon so we can see him! 😃
Once again, thank you for your prayers. We are so blessed by each of you!
If things continue to go well and progress, her chest will remain open until tomorrow morning at 7:30am. They will turn her PICU room into an operating room and the surgeon will be sewing her up! I am not going to lie, that will be a huge relief. It's a little unnerving seeing the movement of her heart beating in her chest. I am glad I am short because I can't see into it very well! 😊 They have a kind of sticker that covers her heart that is a semi-transparent yellow-brownish color, so you can't really see too much of what's inside.
I have gotten a lot more brave to be around her today. I was able to hold her hand for a while until she got the hiccups and totally freaked me out haha! 😊 The nurses were making sure it wasn't a seizure but the surgeon's assistant told us that they were the hiccups.
I will update more later if something comes up, but right now we are just waiting around. We will get to see Eli tonight which we are VERY excited about! He will be staying with us at the Ronald McDonald House along with my mom. We would love for him to stay with us all of the time, but if we were to get a call in the middle of the night where we'd need to leave to get to the hospital quickly, we want to make sure we are able to do so. Hopefully he wakes up from his nap soon so we can see him! 😃
Once again, thank you for your prayers. We are so blessed by each of you!
Monday, April 9, 2018
Strong Baby Ella
We just got to see her for the first time since surgery. It was about 12 hours earlier that we were kissing her and holding her feet and hands. Talk about a long 12 hours. Once I saw her, I realized how much I have missed her today. I miss my babies.
Seeing her on the table was a little shocking. Tonight, we have a nurse that we had last night. He was so sweet with her last night, rubbing her head and feet to get her comfortable (since she can't be held), so I feel at peace leaving her in his care. There were tons of wires and machines all around her. They had a hospital blanket covering most of her to keep her warm and they had a blanket from our home draped over her eyes that I loved to wrap Eli in when he was little. I will never look at that blanket the same again. It has a lot more meaning now. It has comforted both of my babies. 😃
Our nurse told us that we could hold her hand if we'd like and it was too much for me to bear, but Matt went and held her little hand. It was a sweet moment in the midst of all of the craziness.
We met and talked with the pediatrician on duty tonight and she told us that Ella's needing less assistance with oxygen. They're down to 50% and the goal is to get her to breathe our air which is 21% oxygen.
I have felt so weird since seeing her. Like a peace has come over me, but it almost felt like I wasn't seeing Ella, it was kind of like I was seeing another person's baby, a little unreal.
Thank you all for praying! I praise the Lord for His grace that He has shown us and for His provision over our sweet girl. She is a FIGHTER!
Seeing her on the table was a little shocking. Tonight, we have a nurse that we had last night. He was so sweet with her last night, rubbing her head and feet to get her comfortable (since she can't be held), so I feel at peace leaving her in his care. There were tons of wires and machines all around her. They had a hospital blanket covering most of her to keep her warm and they had a blanket from our home draped over her eyes that I loved to wrap Eli in when he was little. I will never look at that blanket the same again. It has a lot more meaning now. It has comforted both of my babies. 😃
Our nurse told us that we could hold her hand if we'd like and it was too much for me to bear, but Matt went and held her little hand. It was a sweet moment in the midst of all of the craziness.
We met and talked with the pediatrician on duty tonight and she told us that Ella's needing less assistance with oxygen. They're down to 50% and the goal is to get her to breathe our air which is 21% oxygen.
I have felt so weird since seeing her. Like a peace has come over me, but it almost felt like I wasn't seeing Ella, it was kind of like I was seeing another person's baby, a little unreal.
Thank you all for praying! I praise the Lord for His grace that He has shown us and for His provision over our sweet girl. She is a FIGHTER!
Oxygen Levels
Just a quick update again, the oxygen levels that she is relying on by the machines is down to 55% from 75-80%. We want this to keep going down so that she won't be relying on that as much and will be breathing more on her own. If this is kept up, things will be better and she won't need the ECMO machine.
We still have not been able to see her yet and don't anticipate to any time soon. The surgeon's assistant came and told us the news. I am so thankful. It gave me a glimmer of hope. That's what we are praying for right now. To not lose hope.
Lastly, thank you for praying. It has been hard for me to continue to pray in these tough moments but I know that the Holy Spirit intercedes for us in these times and I have found such a peace in that. We feel your prayers. Keep 'em coming!
We still have not been able to see her yet and don't anticipate to any time soon. The surgeon's assistant came and told us the news. I am so thankful. It gave me a glimmer of hope. That's what we are praying for right now. To not lose hope.
Lastly, thank you for praying. It has been hard for me to continue to pray in these tough moments but I know that the Holy Spirit intercedes for us in these times and I have found such a peace in that. We feel your prayers. Keep 'em coming!
She's Out of Surgery
Ella is out of the operating room. We got to see her wheeled to her room which was a relief. Then the surgeon came in and gave us the update on her status and that relief turned into angst.
Long story short, her oxygen levels are not high enough and they are concerned about it. If she cannot get these levels up, she will have to go on a back up bypass machine called an ECMO, which is not good. We were told that if she has to be on this machine she will have a 50% chance of living. We are not doing very well with this news as you can imagine. We know that God has her in His hands, but those chances are scary to hear.
Please pray for her oxygen levels to come up and that we would be able to put our trust in God's plan. I know for me this is when my faith and trust starts to waiver a little and I don't want that to happen so if you could help me in praying for that faith, that would be really helpful. Matt has asked that you would pray that his stress and anxiety levels to subside. Please pray for God's peace over all of us.
Thanks for following our journey. We will know more in an hour or so and Matt and I will get to see her soon. This has been a rough day.
Long story short, her oxygen levels are not high enough and they are concerned about it. If she cannot get these levels up, she will have to go on a back up bypass machine called an ECMO, which is not good. We were told that if she has to be on this machine she will have a 50% chance of living. We are not doing very well with this news as you can imagine. We know that God has her in His hands, but those chances are scary to hear.
Please pray for her oxygen levels to come up and that we would be able to put our trust in God's plan. I know for me this is when my faith and trust starts to waiver a little and I don't want that to happen so if you could help me in praying for that faith, that would be really helpful. Matt has asked that you would pray that his stress and anxiety levels to subside. Please pray for God's peace over all of us.
Thanks for following our journey. We will know more in an hour or so and Matt and I will get to see her soon. This has been a rough day.
Please Pray
Please pray immediately for Ella. Her oxygen levels are not stabilizing as they had hoped so it's taking a bit longer than anticipated. I'm scared.
Pictures!!!
Waiting for our baby to arrive
The view from the labor/delivery room
First time seeing Ella after she was taken away by the doctors after birth
The wires and other things she was hooked up to in the NICU
Ella apparently loves boundaries 😃
Little Ella all bundled and snuggled up
Matt snuggling his baby girl
Sweet baby face without the feeding tube
Eli meeting his baby sister!
Getting to hold Ella for the first time since she was thrown on me
Sunrise on surgery day. Praise the Lord!
Ella Rae Waechter
Last time we will see her chest untouched...
Ella snuggled in a blanket for the first time!
Watching the screen for the status update
We also got phone calls every hour (I told you, the nurses are awesome!)
Surgery Day (Warning! Long post!!!)
Hi again!
Let me start by saying how amazing our nurses and doctors have been. They have truly been a gift to us. From the labor and delivery ones to the NICU and PICU (Pediatric Intensive Care Unit) ones, we have been so grateful. We cannot thank them enough.
We are also thankful for all of the kind words and prayers that you all have been saying for Ella. We know that the Lord is with her and has her in His hands. It's kind of amazing to think about how much God loves His children. Until I had kids I don't know if I fully understood His love for us. I think I love my children a lot, but it's incomparable to the love that He has for us. She is such a trooper. She has gotten poked and prodded more times than I could have imagined and she's still a content little girl that likes to be snuggled by blankets or our hands.
We are so thankful for our family too. They have been a great support for us. Whether they were here with us or watching Eli (thanks Tyra!), we cannot thank them enough.
Matt and I have fallen completely in love with Ella. She is sooo cute, how could you not? We were looking at pictures of Eli when he was born and they look so similar, as many of you have also noticed. When Eli was able to meet her on Saturday he was totally in love with her as well. He kept touching her head and asking if he could hold her. It was such a special moment when he saw her. During the time he was down here, he kept pulling over a chair or asking us to pull a chair over so he could see her. He's going to be such an amazing brother.
We of course have had our ups and downs since she has been here but we know that God has her in His hands. I feel like I cry every now and then for about one minute or less, then I'm good. Matt has been such an amazing support for me and I don't know how I would ever get through something like this without him. He is so strong, yet allows his emotions to show. I am a blessed woman!
Today is the surgery day. We are currently sitting with both sets of parents in the waiting room. So far these are the updates that we've gotten and I will try my best to post in the next post the other hourly updates...
We arrived in Ella's room at 6:20 this morning to see her totally happy and cozy. Her nurse was so sweet to her and knew that she liked her feet to be covered and bunched up. They haven't been able to really cover her feet very much because they've been looking at them when they assess how she's doing. I have been holding them for her and bunching her legs up, as if I was holding her. She would get fussy when I would take my hands off of her so I was on my feet a lot of the day and would switch with Matt every once in a while. It was a sweet day bonding with our daughter. It made us feel a little more needed since all of her other needs were being met by the nurses (we haven't even changed a diaper yet because it's too risky with the UAC line in her umbilical cord).
Here are the updates so far...
7:30 we got to walk with Ella and the nurses down the the OR
9:10 first incision
9:35 surgery started
10:35 finished bypass and started the repair of her heart
11:35 everything is going well, still repairing the heart
12:40 everything is still going well, still repairing the heart
1:40 done with surgery, finishing up (probably won't be for a little while still)
2:30 waiting for oxygen level readings to get read properly, having a little trouble getting the correct measurements
4:20 nurse came to tell us that surgery is done and she is heading down to help get Ella from the OR which could still take up to an hour
4:53 we saw her for a couple seconds through a window get wheeled down towards her room with a "train" of people and equipment
Let me start by saying how amazing our nurses and doctors have been. They have truly been a gift to us. From the labor and delivery ones to the NICU and PICU (Pediatric Intensive Care Unit) ones, we have been so grateful. We cannot thank them enough.
We are also thankful for all of the kind words and prayers that you all have been saying for Ella. We know that the Lord is with her and has her in His hands. It's kind of amazing to think about how much God loves His children. Until I had kids I don't know if I fully understood His love for us. I think I love my children a lot, but it's incomparable to the love that He has for us. She is such a trooper. She has gotten poked and prodded more times than I could have imagined and she's still a content little girl that likes to be snuggled by blankets or our hands.
We are so thankful for our family too. They have been a great support for us. Whether they were here with us or watching Eli (thanks Tyra!), we cannot thank them enough.
Matt and I have fallen completely in love with Ella. She is sooo cute, how could you not? We were looking at pictures of Eli when he was born and they look so similar, as many of you have also noticed. When Eli was able to meet her on Saturday he was totally in love with her as well. He kept touching her head and asking if he could hold her. It was such a special moment when he saw her. During the time he was down here, he kept pulling over a chair or asking us to pull a chair over so he could see her. He's going to be such an amazing brother.
We of course have had our ups and downs since she has been here but we know that God has her in His hands. I feel like I cry every now and then for about one minute or less, then I'm good. Matt has been such an amazing support for me and I don't know how I would ever get through something like this without him. He is so strong, yet allows his emotions to show. I am a blessed woman!
Today is the surgery day. We are currently sitting with both sets of parents in the waiting room. So far these are the updates that we've gotten and I will try my best to post in the next post the other hourly updates...
We arrived in Ella's room at 6:20 this morning to see her totally happy and cozy. Her nurse was so sweet to her and knew that she liked her feet to be covered and bunched up. They haven't been able to really cover her feet very much because they've been looking at them when they assess how she's doing. I have been holding them for her and bunching her legs up, as if I was holding her. She would get fussy when I would take my hands off of her so I was on my feet a lot of the day and would switch with Matt every once in a while. It was a sweet day bonding with our daughter. It made us feel a little more needed since all of her other needs were being met by the nurses (we haven't even changed a diaper yet because it's too risky with the UAC line in her umbilical cord).
Here are the updates so far...
7:30 we got to walk with Ella and the nurses down the the OR
9:10 first incision
9:35 surgery started
10:35 finished bypass and started the repair of her heart
11:35 everything is going well, still repairing the heart
12:40 everything is still going well, still repairing the heart
1:40 done with surgery, finishing up (probably won't be for a little while still)
2:30 waiting for oxygen level readings to get read properly, having a little trouble getting the correct measurements
4:20 nurse came to tell us that surgery is done and she is heading down to help get Ella from the OR which could still take up to an hour
4:53 we saw her for a couple seconds through a window get wheeled down towards her room with a "train" of people and equipment
Saturday, April 7, 2018
Meet Baby Ella Rae Waechter!
Hi everyone,
We are so excited to announce the arrival of our sweet baby girl, Ella Rae Waechter! We were induced on Wednesday, April 4th, and had her on Thursday, April 5th at 5:27 pm. It seems like a long haul, but the actual labor part was pretty fast! I got to about 5.5cm dilated then received the epidural and in under two hours or so I was ready to push! Dr. Gilbert and our nurse, Jenene, were excellent. Matt was coaching me through and was told to put on coveralls so that he could go with our baby to get all of her tests done quickly after she was born. After pushing for less than an hour, Ella joined us! (Talk about a different experience than Eli's delivery!) Dr. Gilbert was really great and threw Ella on my chest immediately because he knew I would want to get to hold her. I got to hold her for about a minute, which was unexpected, and it was one of the best minutes of my life. The other nurses quickly took her away and Matt followed. I was so thankful he could go and be with her.
The next couple of hours consisted of her getting lots of testing done. We were told that she does indeed have HLHS, but not a "classic" kind. I'd explain, but it's a lot of medical jargon that isn't too important 😀. She will be having the Norwood procedure done just as if it was "classic". I was able to go and see her again a few hours after she was born then I was transferred to my room. This was when it really hit me. I could hear babies crying around me and it just felt completely unfair that I wasn't able to be with mine.
The next day was filled with family visiting, more testing on our baby girl, and lots of emotions. In the NICU the previous night they gave her formula which didn't agree with her tummy so she has been given nutrition through IVs--which meant... more tubes. It felt like if we left for any extended time, we'd come back and she'd be "decorated" with more tubes. I couldn't help but cry multiple times all day. It's so hard to have your baby on a table instead of in your arms. I really wrestled with God last night and asked him why I couldn't hold my baby and about how a mom should be able to see her baby's eyes open in her first days of life, which I still had not. It feels so unfair. Why is our baby having to go through all that she's gone through? Why did God choose for her to have this condition? Why can't Eli get to meet his baby sister when he has been waiting for so long already? Why? Why? Why? I honestly don't think I will ever know the answer to these questions, but I know it's because that's how God has planned it and that's how He wants her to glorify Him. So I just have to find peace in that. Matt and I went down to the NICU once more before bed and said goodnight to our sweet girl. I was so thankful that we did this because she seemed aggravated all day. It was really hard for us to see because we wanted to help her and hold her and of course couldn't, but the night shift nurse decided to give her these weighted rice bags that acted similar to a swaddle and she loved them and slept so well after. So it was a gift to get to see her so much more comfortable.
This morning we went down to visit again and decided on the name ELLA RAE WAECHTER. We were torn between two names and decided she was definitely an Ella. I loved this name too because Eli told us that would be her name when she (as he says) popped out. We have loved this name all along but were a little hesitant because it seems to be so popular, but now that we have named her it just seems so perfect for her. We got excellent news this morning that she would be transferred to the PICU (Pediatric Intesive Care Unit) today instead of tomorrow and that meant that Eli would get to meet his baby sister and that she would have her own room where one of us can stay over night. They transferred her around 11 this morning and it felt like a totally different hospital. Her room is colorful and large and the nurses are able to give her a lot of attention. I am so thankful to have been given the gift of the extra day in the PICU. We have learned a lot and have talked a lot with the different doctors and overall she's doing well. Surgery will be Monday and will take around 6 hours.
Tonight is our first night at the Ronald MacDonald House. I am super thankful to have this place to come to, but I hate leaving Ella. It's such a weird feeling... Eli is staying with us tonight which we are thankful for, I just wish our family could be complete and we could all be snuggling together.
I am mostly just writing about what has happened and will eventually talk about how we are feeling about everything in a different blog post.
We will keep you posted as much as possible in the coming days and I will definitely be posting photos soon, but for now this will have to do 😁.
Love,
Jillian
We are so excited to announce the arrival of our sweet baby girl, Ella Rae Waechter! We were induced on Wednesday, April 4th, and had her on Thursday, April 5th at 5:27 pm. It seems like a long haul, but the actual labor part was pretty fast! I got to about 5.5cm dilated then received the epidural and in under two hours or so I was ready to push! Dr. Gilbert and our nurse, Jenene, were excellent. Matt was coaching me through and was told to put on coveralls so that he could go with our baby to get all of her tests done quickly after she was born. After pushing for less than an hour, Ella joined us! (Talk about a different experience than Eli's delivery!) Dr. Gilbert was really great and threw Ella on my chest immediately because he knew I would want to get to hold her. I got to hold her for about a minute, which was unexpected, and it was one of the best minutes of my life. The other nurses quickly took her away and Matt followed. I was so thankful he could go and be with her.
The next couple of hours consisted of her getting lots of testing done. We were told that she does indeed have HLHS, but not a "classic" kind. I'd explain, but it's a lot of medical jargon that isn't too important 😀. She will be having the Norwood procedure done just as if it was "classic". I was able to go and see her again a few hours after she was born then I was transferred to my room. This was when it really hit me. I could hear babies crying around me and it just felt completely unfair that I wasn't able to be with mine.
The next day was filled with family visiting, more testing on our baby girl, and lots of emotions. In the NICU the previous night they gave her formula which didn't agree with her tummy so she has been given nutrition through IVs--which meant... more tubes. It felt like if we left for any extended time, we'd come back and she'd be "decorated" with more tubes. I couldn't help but cry multiple times all day. It's so hard to have your baby on a table instead of in your arms. I really wrestled with God last night and asked him why I couldn't hold my baby and about how a mom should be able to see her baby's eyes open in her first days of life, which I still had not. It feels so unfair. Why is our baby having to go through all that she's gone through? Why did God choose for her to have this condition? Why can't Eli get to meet his baby sister when he has been waiting for so long already? Why? Why? Why? I honestly don't think I will ever know the answer to these questions, but I know it's because that's how God has planned it and that's how He wants her to glorify Him. So I just have to find peace in that. Matt and I went down to the NICU once more before bed and said goodnight to our sweet girl. I was so thankful that we did this because she seemed aggravated all day. It was really hard for us to see because we wanted to help her and hold her and of course couldn't, but the night shift nurse decided to give her these weighted rice bags that acted similar to a swaddle and she loved them and slept so well after. So it was a gift to get to see her so much more comfortable.
This morning we went down to visit again and decided on the name ELLA RAE WAECHTER. We were torn between two names and decided she was definitely an Ella. I loved this name too because Eli told us that would be her name when she (as he says) popped out. We have loved this name all along but were a little hesitant because it seems to be so popular, but now that we have named her it just seems so perfect for her. We got excellent news this morning that she would be transferred to the PICU (Pediatric Intesive Care Unit) today instead of tomorrow and that meant that Eli would get to meet his baby sister and that she would have her own room where one of us can stay over night. They transferred her around 11 this morning and it felt like a totally different hospital. Her room is colorful and large and the nurses are able to give her a lot of attention. I am so thankful to have been given the gift of the extra day in the PICU. We have learned a lot and have talked a lot with the different doctors and overall she's doing well. Surgery will be Monday and will take around 6 hours.
Tonight is our first night at the Ronald MacDonald House. I am super thankful to have this place to come to, but I hate leaving Ella. It's such a weird feeling... Eli is staying with us tonight which we are thankful for, I just wish our family could be complete and we could all be snuggling together.
I am mostly just writing about what has happened and will eventually talk about how we are feeling about everything in a different blog post.
We will keep you posted as much as possible in the coming days and I will definitely be posting photos soon, but for now this will have to do 😁.
Love,
Jillian
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