The Cross
The Cross is the symbol of God's love.
As Christians, the Cross is a part of our faith. Some could say it's central to our faith. It's the thing we (should) cling on to when things get tough.
She was intubated, extubated and intubated again all within a week. The doctors thought she was starting to be in a good position to get a CTA on Thursday 7/13 ( a 3D map of her heart to show the surgeons how to do the stent procedure) then get a stent the next day.
On Wednesday, 7/12, she had a great day, she was alert, her numbers looked good and she even got into the Mamaroo to be rocked some. She was on 100% oxygen and nitrate through a high flow cannula. She was lifting her head in the bassinet a lot so we were thinking propping her up in the mamaroo would appease her and it did. She loved it! She was sucking on her paci super well and the Physical therapist and occupational therapist were able to work with her some. When we left at 7:30pm she was in a good spot. Her Saturation levels were dipping in the 60s, but nothing that a little tinkering of some medicine couldn't fix. We got the call at 8:15 saying they were going to intubate.
Joshua and I were super emotional. We were more than worried; now we were mad. Mad that she had a great day, but had to be intubated again, mad that we didn't advocate for Evey more and ask to do the CTA scan earlier on Wednesday and mad that it seemed like day and night shift had different goals for her. I had prayed all day that she wouldn't have to be intubated. We weren't clinging to the Cross at that moment.
Joshua's sister is a nurse so he called her and she talked him through all the medical decisions that were made. She reminded us to pray, she reminded us that we are at the best hospital in NC for Evey's heart and she calmed us down. We checked in on Evey every three hours that night to make sure she was still doing well with her intubation and we were reassured by her night nurses that she was.
I came in on Thursday, thinking today would be a day of rest for Evey to get her stable enough to go get the scan. They wanted her saturation levels to be high enough to transport her for a 10 minute walk over near the children's hospital. As they were doing rounds and discussing the plans for the scan and stent procedure, Evey began to have saturation issues and her blood pressure was getting extremely low. They tinkered with her medicine and she was more stable and the doctors went on doing their rounds.
They were about to transport her when her numbers began to go haywire and the doctors and nurses all came in to help get her stable. The nurse practitioner came over and told me what they were doing and so I asked if there was a chance they could by pass the CTA scan and take her down to the cathlab to get her stent. She said it could be a possibility. The doctor and nurses tried everything to get her numbers stable. Then I heard the doctor say, let's get her on ECMO. That was the last thing I wanted to hear. They say don't watch medical TV shows because they don't give you an accurate day in the life of a hospital but if it wasn't for Chicago Med I wouldn't know what ECMO meant. They asked me to leave the room and that it could take up to an hour and a half to get her set up on the machine. As I was leaving her room, I began to tear up and tell God, you see what's going on and know what's on my heart. Please help!
I got out to the waiting room and got Joshua on the phone, I couldn't get out what I needed to say. I finally calmed myself down to tell him they were putting her on ECMO, basically life support. He told me he would be on the way with the kids. I got off the phone with him and when I did one of the doctors saw me and said, I just wanted you to know, we didn't have to put her on ECMO, she stabilized herself on her own. Thank you God!
The cardiologist came out next and talked to me about what they were going to do. He let me know that after I left there were 40 people in the room discussing what to do. They decided that she needed to go right away to get the stent. It has now become more or less an emergency stent procedure. He let me know that the surgeons who were going to do the catherization were top notch and that his team and the catherization team treat each patient like they are family. The surgeons were amazing at explaining the procedure and what could happen. They had a plan for everything. I was able to tell Evey to be brave and strong and that we loved her. I gave her a lot of head rubbing from her daddy, sister and brothers. I gave her a few extra pets from Ty since he likes petting her. They got all of her medical accessories and wheeled her down the hall at 11:20. I went to the waiting room to meet Joshua and the kids.
They called 30 minutes later letting us know that she did well with the incision in her neck and was staying stable on her own and the surgeons were in the artery looking to see where to place the stent. They updated every hour. At 1:50 they called and said that everything went well and that the surgeons were able to place two stents to help fix her flow. One of the surgeons came up and showed us through pictures of what her heart looked like before the stent and after the stent. When I saw the after, I was amazed at how it looked like a beautiful cross. It was a wonderful reminder of God's love for her and the promises He has for us.
She kept the nurses busy for the rest of the day and through the night. I called at 3am to see how she was doing and they were still working on her high blood pressure. The nurse said her lung sounded a little crackly and that they were going to do a little respiratory PT to help break the crackling up in her lungs. I got off the phone and prayed that her blood pressure would go down.
Today, 7/14, is her original due date. She has been through a lot in the first 6 weeks of her life. When we got to the hospital, she was next on rounds and the nurse let us know that all of her numbers were looking great. The doctors were pleased with her numbers and let us know that they will begin to wean her off the paralytics and nitrates and to extubate her within the next 24- 48 hours. We all know she can be a little fiesty at night so they want to take it slow and steady with the extubation.
We are praying that she will come out of her paralysis with minimal agitation and that any blood pressure issues will be resolved with the right medication. We are also praying that she can be extubated and stay extubated so that she can begin to get oxygen through a cannula and start her feedings again.
She has proven that she is strong, brave and works hard to overcome the obstacles that life throws at her! We are super proud of her! We can't wait to see how God shows us His love, promises and abundance throughout her life.
Be like a Bee- hardworking, wise and delicate!
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