I’m pretty disappointed and discouraged by this unexpected turn of events, although I fully support the medical team’s decision. Daphne seemed to be doing so well, but evidently, something isn’t quite right. The worst part is that there’s nothing I can do to help her improve her stats. I just listen to the monitor ding, over and over, and watch the numbers fall. Then they rise for a little while, before it starts all over again. She still looks great and is breathing steadily; but something has changed, and no one knows what.
This morning, the doctors did an x-ray to check for fluid on the lungs and an echocardiogram to check blood flow to the lungs. Based on what they could see, things looked good. Tonight the neonatologist, Dr. Toms, suggested we put Daphne back on Lasix to see if that would help dry out her lungs even further (that’s a good thing). She was taken off Lasix two days ago, so that could be the variable affecting her recovery. If Daphne’s stats stay low after we put her back on Lasix, we’ll have to move on to a heart catheterization to explore the blood flow in more detail.
I was really looking forward to being discharged, because we can’t submit the final paperwork for ICPC until we have hospital discharge papers. But if Daphne had to take a step back in her recovery, I’m glad it happened before discharge, while she was still hooked to her monitors. This experience has made me more concerned for the future. Even though her stats are low, she looks good. After discharge, how will I know if her oxygen saturations are low? How will I know if she’s struggling? I wasn’t worried before, but I am now.
Today was a tough and lonely day. Watching my baby struggle was hard and frustrating. I miss my family, and I wish we could all be together. My mom will be joining me in Alabama on Saturday, and I look forward to seeing her. It will be nice to have someone to talk to face to face (although I have appreciated all the phone calls, e-mails, and comments from friends and family).
Let’s hope Daphne bounces back quickly and is ready for discharge early next week.
I'm sorry, that can be so discouraging. My baby was only in the NICU for a week and I remember how hard it was. He had several times where his stats would do that and they'd push his discharge back a little more and a little more. Then I was scared to take him home. Had all the same worries as you. I had to take him home on several machines and he was on those for 2 more weeks at home. They will tell you the things to look for as far as oxygen sats go. But I also believe you have mother's intuition. You are a good mom and you will know if something is wrong. I know this will be a long journey for you and your family, but with the Lord's help, you will be able to handle it all. If you haven't already done this, I'd suggest taking a baby CPR class even if its a refresher. I feel like that gives you a lot more confidence. Especially with a heart baby it is good info. Let me know if I can help with anything!
ReplyDeleteP.S. One of the things they tell you and that I noticed in your post, is to watch her color. That's one indication of low sats. I noticed in this post that her skin color seemed very pale compared to previous posts. You probably don't notice as much b/c you're around her every day. My kids are naturally darker in skin color so it was hard for me to tell when Oak's color was changing... It might be helpful to take a pic of her or refer to one you already have from when she is doing well and use it for comparison when you worry her color isn't right.
ReplyDeleteRachel, I'm sorry to hear this sad delay. Daphne's medical team sounds excellent, though. I'm glad they're taking such great care of her. To ease your worry, you can rent or buy (I think one can even be "prescribed" to Daphne) the machine that measures her oxygen saturations. My parents have one for my sister and the peace of mind it brings is worth what it costs to rent it (the color under her fingernails is also a sign - you'll learn with time how to read that). Don't doubt yourself - you're already doing a great job and are going to learn SO many things about taking care of Daphne. And you'll get extra special help. ;)
ReplyDeleteI'm sure it IS a good thing this happened before she was taken off the monitors, so they can pinpoint and solve the issue. Way to look on the bright side of hard situation! I'm sending even more prayers your way. Love you both!
ReplyDeleteRachel, I am so sorry, but I know that it was a good thing she was still in the hospital. You are all in our prayers and I know you will be home soon. Daphne is strong and a fighter, I mean afterall she is a Gainer! Don't worry about not knowing if something isn't quite right, you are a great mom and you will be able to tell. Lots of love your way!
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