Here are some photos of our daughter and sister from the last couple of weeks. It has been crazy busy with hospital visits, the new dairy headquarters (me), baseball, a wedding, and did I mention that I have 2 active boys!! Thank goodness for friends and family that help out with our life right now. I really appreciate the meals, phone calls, and help!!! Thank you, thank you, thank you!!!Deanna is steadily taking a bottle at 2-3 feedings a day. It completely wears her out and she only gets 1/3 of her feeding for that hour from the bottle, then off to be "gavauged." This is her tube feeding of breastmilk and where she gets her nourishment. She tends to be awake after eating and looks bright-eyed and bushy tailed and ready for the "real world" only to get snuggled down and wrapped tight in blankets for a cozy nap. Three hours later...repeat. We did have a swallow study down last week only to be told that she does aspirate when drinking so we need to thicken her milk and continue to go slow and watch for signs (coughing, sputtering, can't breathe look). This was the first study and we are pretty sure we are going to get a 2nd opinion to look at the video and give us more explanation as to why it is taking Deanna so long to learn this behavior. From the study, it looked like everything antomically was good, but I'm not so sure...I've requested a 2nd look from an ENT doctor, we'll keep you posted. This week we need to decided what the immediate future looks like for Deanna. Our options are to go to Children's Hospital in Denver to get more answers (prayerfully), stay where we are and have the little girl dictate how long she likes hospital food, or possibly get trained with the NG tube and bring Deanna home. We haven't decided what is best for our daughter at this point, so please pray for direction and wisdom!!
Thanks for your support along this journey.
Today, she is 7 lbs. 12.5 oz-----28 days old and one pound heavier!!
6 comments:
Praying for you my friend. I can't believe she is alomost a month old!! Let us know what we can do!
Jami,
I have been praying for you during this time. Deanna is beautiful, you can see in her eyes that she loves her mom when you are taking her picture. I am thrilled to hear that she is improving everyday. All my Love
Deanna looks so good. I am so glad she is doing better and hopefully will be eating better soon. I am sure you are ready to have her home. Take care. Love. Aunt Ev.
Little Miss Deanna,
You are looking so good. Keep working hard sweetie, you are in our prayers. Miss you baby girl.
Jami,
You are so strong! Thanks for the update. She looks so good, I just want to reach in a scoop her up. Lots of love and prayers to you and your family.
What a beautiful baby girl, and what an honor to raise her up in prayer, and her mother,father and brothers too! Unc Lar
She's beautiful guys! We'll be praying for more healing, more answers and most of all, more of the Lord's presence and power poured down on you. Love to you all as you take this one step at a time.
Love, Sarah and the gang
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