Quick update for tonight. It was a nine hour day at the hospital.
From around 2:00pm today until we left her at 8:30pm tonight, Lydia was having seizures. Most of these came with substantial drops in her oxygen caused by her not breathing and she turned blue several times. The first big desat she had when she stopped breathing, our nurse Rachele turned to me and said, “I want you to bag her” meaning I needed to try to breathe for Lydia since she couldn’t breathe for herself. She knew I was nervous about this happening at home and me not knowing what to do. I took the bag, smooshed it down onto Lydia’s tiny little face and started giving her breaths. After about a minute and a half she started to breathe on her own again. I promptly sat down and burst into tears.
This happened multiple times over the next five hours (minus the me bursting into tears) and Micah and I took turns bagging her to get her to breathe again. On the plus side, if you can call it that, all the nerves we had about what would happen if she had these episodes at home are pretty much gone. I think the NICU was ready to hire us.
The doctor is still really pushing to get her home tomorrow. They’re working on getting her meds worked out so she’ll be stable enough for a car ride. Finding a combination that works to control her seizures is proving more difficult than they thought, and they don’t seem terribly hopeful that it’s anything they can control long term.
We just spoke to Rachele and she’s been OK for the past hour. It’s amazing how after a day like today we say, “Thank You, God!” for an hour seizure free.
Please keep praying. Now that we know how to manage her desats, we’re not as afraid. We want her home with us for whatever time we can have her. As always, we are still so thankful for our sweet girl. Every moment is a sweet gift from our God. Even the hard ones.
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
I have been praying for your precious daughter, Lydia. I have asked ladies at my church to as well. I know how hard it can be to see your infant newborn fight for their life. I just wanted to let you know your Lydia and her fight means a lot to me and others. I started this new blog dedicated to babies and children who are fighting for their lives called "Remember Our Fight". I know you are so busy just being everything that Lydia needs right now, but if you would like I can make a Love Collage for your daughter. You will see what its about on the blog.
ReplyDeletewww.rememberourfight.blogspot.com
Love and prayers from Texas
I have reached out to my blog community to lift Lydia in prayer. I see a few of them have been commenting. I continue to think of you and pray for you often. My heart is burdened for all three of you and I count it a privilege to hit my knees in prayer. How wonderful it would be to take Lydia home as soon as possible. I am praying for this miracle to happen. Thanks for keeping us posted.
ReplyDeletePrayers for your precious baby and your family. God has given much, and asks much of us. I hope that he will reveal his plan,and in time all of this will be a distant memory that makes you all the more grateful for her! I hope her journey home comes soon.
ReplyDeleteThinking & Praying for you all so much. Prayers & {{HUGS}}
ReplyDeleteCaroline