Hello everyone,
My blog post that I wrote yesterday got deleted from my phone so I am going to rewrite it and update it since a lot of it got changed.
Yesterday Ella went in for a heart cath procedure. This is done by our cardiologist, Dr. Hill. He goes into her arteries with a scope through her thigh and arms. He was able to see the pressures in her heart and was able to put a balloon into her aortic arch, where the blockage is. He also checked out Ella's clots in her neck arteries. He came back saying that he was able to get the blockage smaller, but not totally taken care of. He was hoping that the leak near the aorta would be less because the pressure in the left side of the aortic arch would be less.He also noted that the clots are kind of a lost cause... Her body has created so many collateral veins to carry the blood to and from her head (isn't that amazing? God created us all so amazingly I can't even believe it). So yesterday I would've said, YAY it worked! But new news from the echo from this morning shows that the blockage was not taken care of, it actually looks like it is a kink of some sort, and it needs to get surgically repaired. 😔
This morning through the afternoon, Ella was really struggling to breathe and her oxygen sats, ever since the cath, were extremely low (hitting low 40s at times). She was gasping for breath a lot and I just couldn't watch her struggle so much. Her sats continued to stay low and alarms were blaring all night and day alerting us of this. I ended up leaving and going home with my dad to grab our car and a few other things that she would like to have in the hospital room. While driving back, I broke down crying. It felt like we were really going to lose our baby girl. I had known this was a possibility all along, especially given the statistics of her condition, but the reality of it really hit me. I was listening to KLove on the radio and felt like God was speaking to me through each song, telling me that He has a plan and that I need to trust in Him. I called Matt and we talked about how we hate to see her suffer and how if God was going to take her, we would hope it would be soon so she won't have to suffer anymore... It's odd how circumstances change our outlook. When we were first admitted, we were determined to do anything for her, but our hearts changed a little... Watching her breathe so hard and so fast and crying just kills us. We continue to look to God for strength and wisdom during these hard times. I was texting with the surgeon's assistant, Ashley, and told her I was afraid we were going to lose her. She was so encouraging and reminded me that there are still options. Matt and I have talked about how we have never lost hope, because God can do anything, but sometimes it's been hard to see things optimistically.
I got back and met up with Ashley and Dr. Watanabe (the surgeon). They gave her blood to see if that would help with her sats. I honestly thought of doing that earlier because I had seen it help her so many times before, but I didn't say anything. Looking back now, I wish I would have! I was relieved that they thought of trying that because it has been a game changer. We talked about the different surgical options and Dr. Watanabe and Ashley seemed so hopeful that these could work. My outlook, once again, changed. I was feeling much more positive about things and felt like they would do all that they can to help Ella get better. Dr. Watanabe has been such an encouragement to me as well. I know that he is so passionate about his job and really loves his patients, it is so evident in the way that he thinks about different options and looks for new ideas that could help. And Ashley has always been such an encouragement to me because she explains things really well, but in a gentle way. He is hoping that her oxygen levels will start to even out and that the tests he will run tomorrow will show that she won't need surgery right away. He is really wanting to wait as long as possible to give her surgery. The earliest they would be able to get us in is Monday but he's hoping to hold off a couple of weeks.
I am happy to say that Ella's sats have improved dramatically since the blood transfusion!!! She has been satting between 75 and 80 since she started receiving them. God brought me to a place of surrender once again and rescued our baby girl. I'm not sure if I've said this in a previous blog, but I have a new understanding of what it must've been like when Abraham trusted in God and surrendered Isaac up to him. It must've been so hard for him, yet he obeyed God and trusted Him with his son. I know that I need to trust God with Ella, no matter the outcome.
In other news, Ella got her FIRST TOOTH!!! She has been biting my finger for a week or so now and it finally came through. She's only 3.5 months and has a tooth! So she is ahead of the game in one thing haha! The little snaggle tooth is cutting the underneath of her tongue though, she really can't catch a break!!! We are still awaiting a real, responsive smile from her and for her to start eating by mouth. She still seems to have the development of a newborn rather than a three month old. It's sometimes hard for me to not worry about all of that, coming from a Child Development background. I see how behind she is physically and socially and I get a little nervous. I also worry about her having trust issues later in life due to us not being able to go to her when she cries at night in the hospital, but once again, I am trusting the Lord.
Talk about a roller coaster of a day... Please pray that she will get stronger and that her labs tomorrow will be good so we can go home and put off the surgery for a couple of weeks. Please pray for us to be wise in making decisions for her too.
I will update you as soon as I can about the surgery date.
Love,
Jillian
The story of our journey with a daughter diagnosed with Hypoplastic Left Heart Syndrome (HLHS)... And as it continues with our son with a VSD.
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Continuing to pray for you all that God will strengthen you and give you peace as you go through this. Your article is such an encouragement of God's power and your trust in Him
ReplyDeleteI'm praying for you and thanking God for all He is doing in and through your journey. Wishing I could be there with you...
ReplyDeleteDear Jillian - my husband and I have kept up with your story through your wonder Aunt Sue and have been praying for you and your sweet family. This morning is the first time I’ve read your blog post, I’m so thankful I did. About 10 years ago we were in a similar situation with our 15-16 year old daughter who has epilepsy. I can totally relate to your emotions and concerns. Reading your post this morning brought a flood of memories. I desire with all my heart to be an Aaron and come along side you, hold your arms up, and encourage you to keep on. You are doing amazingly well in trusting God and continuing to realign your perspective and surrender. Don’t grow weary, know many are praying. We see Jesus in how you are processing, your full surrender and eternal hope. If you don’t mind I’d like to get your email address from your Aunt and share some specific truths the Lord gave us along the way. Much love in our hearts for you, your husband and your precious baby girl
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