I want to write... to let everyone know whats happening, but I really don't know what to say.
We are really living one day, one decision at a time. Julia is doing well all things considered. In fact, she was able to be extubated (breathing tube removed) today!!! And is doing very well with that. She is now on a machine called SiPap. It is less invasive but still delivers air to help her breathe. Feeding is going well too, she only gets about a Tbsp of milk every 3 hours through a tube, but it is slowly increasing and it's great that she is doing so well with it.
It's so hard not knowing what each day will bring - we are learning that we really can only worry about today and not try to figure out tomorrow or the next day. She is doing wonderfully today. I was able to hold her for the 3rd time today. These moments are very special to me. It should be easier to hold her now that she does not have the breathing tube in - please pray that she continues to breathe well enough that she can remain on SiPap.
We still just feel so grateful that she is here (the more we read about Trisomy 18 the more we see that the odds were not in her favor). That she is a part of our family for eternity. That she is one week old today. The Lord has been so kind. We are trying to keep a list of the tender mercies that we recognize in our lives. There are many. Heavenly Father is close to this special little girl and he has not left us comfortless. As we rely on Him and trust in Him, we feel peace in this trying time. I can even see now how the Lord was trying to prepare us for this trial. We love our little Julia, we will embrace each moment we have with her but we feel willing to submit ourselves to God's will whatever that may be.
We thank you, and cannot thank you enough for the service and the words of support our family has received. May you all be blessed - I know you will be blessed for your service.
I am not very good at writing and expressing my feelings. But I do find it helpful to share some of the things that we are thinking and experiencing. I am happy to be able to share our little Julia with all of you whom we love, and who love and support us, in some small way.
5 comments:
I hope she continues to do well! I'm sure it's hard but a blessing to live day to day. Julia is precious. What a sweet gift she is
Woo hoo! Good news I love it! We are praying for you like crazy.. Hope you feel it! Love ya!
Congratulations on the birth of your miracle! I have a now 4 year old full trisomy 18 daughter who ended up being trached at 6 weeks due to obstructive apnea. My prayers and thoughts are with your family!
I want to encourage you to connect with other families on this journey. We have a really great facebook support group: https://www.facebook.com/groups/T18Mommies/
If you would like to check out Rebekah, here is her information:
http://buddzoo.blogspot.com
http://www.facebook.com/rebekah.budd
You can send away for a free "birthday" bear blanket from Hope for Trisomy. Look under Gemma's Bears: www.hopefortrisomy.org
Thank you so much for sharing Sheryl. It's such an honour to hear how you and your family are doing and read of your testimony in a time of difficulty.
I'm also so glad that you feel everyone's love. It really is overflowing. I'm in awe by how much everyone cares. We're always praying for you.
Matt and Sheryl! My heart aches so much for your news. I'm so grateful for your testimonies, which shine blazingly through everything you write. THANK GOODNESS for the Gospel!!! What an amazing spirit to be sent to such a body. You and your sweet little Julia are in our families prayers!
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