We arrived at Duke this morning and met with our cardiologist. He talked with us and explained a number of things to us. He elected for an NG tube for now as the best option for Eliana. He doesn't feel that we have time for a G tube. He said that it would need to be in place for a good 4 to 6 weeks prior to heart surgery to make sure that it is healed and to reduce the risk of infection. He doesn't feel that we have that much time before her heart surgery.
Not quite what we expected to hear but I trust it is for the best. I am thankful for the doctors that we have as they are caring and sensitive to us. Taking a break as Eliana is starting to fuss.
Roger and I agreed that we were ready for admission to the hospital today. Eliana has been feeding so poorly! It's been getting worse by the day and today has been by far the worst yet. She has often been awake and would take about 2/3 of an ounce and then nothing. She wouldn't fuss and also wouldn't eat.
Getting admitted took a long while. It was about 5pm before we were in a room. Shortly afterwards Eliana was examined by a doctor. The nurse then came in to insert the tube. Roger held her head still and I had her hands. The tubing is small - it would have to be as her nose is so very tiny. It is also long! She didn't like it - no surprise there!!! It was hard for me to watch all of that tubing going in and going in and going in. She cried a lot afterwards. I think she's cried more today than she ever has before.
After getting her settled they started the feed and she took it well. 2.5 ounces! No reflux or gagging. She did a great job. I held her through the feed as she was fussy. She has finally settled down and it taking her second feed now while asleep.
I talked with most of my children on the phone. I miss seeing them and being with them. Daniel wanted to give me a big hug! Hearing "I love you" from them is just the best! How blessed I am to have such a wonderful family!!! Part of my conversation with my 5yo was really cute.
Isaiah: Mom, do you know what I want for Christmas?
Mom: I don't know, what do you want?
Isaiah: I want a baby.
Mom: You want a baby like we got Eliana this past Christmas?
Isaiah: No, I want a baby for me.
Mom: What would you do with a baby?
Isaiah: I would let you feed it. Would that make you happy?
Mom: Yes, very happy.
We still have a lot of unknowns in terms of what will happen next. It all really depends on how Eliana is doing. It does not look like she will be getting a Gtube. If she needs one it would be after her heart surgery. Really hoping that will not be needed!!! I'm hoping she'll be able to eat on her own then.
In terms of timing, surgery could be as early as next week if she isn't doing well. Thus far her heart appears to be doing well - not in such distress that surgery is necessary right now. We are thankful that she isn't in discomfort now too. He still thinks that it will probably be in the next 4 weeks. She would most likely be on the feeding tube through her surgery.
That's really all I know for now. I'm so very sorry that my little baby has to endure all of this. I'm praying specifically that this time of difficulty will draw me closer to God. I'm praying that for my family too. I'm also praying that this would be something draws us closer together as a family. We are really needing to help and depend on each other. Praying too that God would be glorified through this.
I've been meditating on Phi 4:6-8 I find that my mind can be plagued with emotions that don't help me and can't be from God. Guilt - wondering if I should be doing something or not being doing something. Guilt about how I'm spending my time and am I doing enough. Fear of the future and what it holds. Fear for my daughter and her heart. Sadness over the loss of dreams that I had for my daugther and our family. Loneliness and isolation over having to stay away from virtually all activities and people. This isn't where I want to live my life!!! I want to focus on things that are pure, good and true! I want my mind to turn to God, to follow Him and to rest in His strong arms as He carries me when I don't have the strength to do it myself.
Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things. Phil 4:6-8
God has been bringing this passage to me repeatedly. I'm trying to listen.
I have so much to be thankful for - family, friends and a God who loves me completely!
Thank you dear friends for your continued prayers for our precious daughter. Here are some specific requests for our family
- Feedings for Eliana would improve. I would love for her to be able to feed orally and be supplemented with the feeding tube only when necessary. Hopefully getting to the point that most/all of her feeding is done orally.
- Feeding tube would stay in place! Also that Roger and I would feel comfortable placing the tube, using the tube and any other equipment that comes with the tube.
- Family - that we would learn patience, grace and abundant love through this time.
- Doctors - wisdom in treating Eliana and for knowing when she will need surgery.
- Wisdom in the decisions we will be making about and for our family. Juggling the needs of a little girl that has a lot of medical appts with our other 5 children.
- Marriage - that Roger and I would continue to learn how to best communicate and work together as a team knowing that God can and will work best through both of us.
- Children - that they would be patient with each other, willing to help and understanding of what is going on. Rebecca is having an especially hard time with Eliana's needing medical care.
It appears that we will likely be in the hospital until Thursday - that is Eliana and I. Roger is currently home with the other children and here at the hospital when they are with friends. I need to go as it's time to pump again. I'm sure I've forgotten something, but I'll write more when I'm able. Roger has brought a laptop for me to use while I'm here in the hospital. Isn't he thoughtful?! I can't receive emails, but can read messages here.
Thank you sweet friends for walking through this with us!