We are super excited to let you know that our baby girl has finally come home!
It came a bit out of left field - but the doctor's told us last week Wednesday that they would be very comfortable with us taking Elida home! They are usually hesitant to do this, simply because it is a bit tricky to work with a feeding tube in a home environment. However, because of their confidence in us as parents and being that we live very close the hospital - they encouraged us to get her out of the NICU. It goes without saying that babies grow faster outside of the hospital!
In order to make the decision a bit easier for Seth and I, they let us "room in" with Elida at the hospital. We hooked her up to the feeding tube and monitor that we would use at home in a private room to see how it would go. The nurses would stop in from time to time to check on us, but otherwise we were on our own to care for her. After two very successful (and easy!) nights with her, we knew there was no way we could leave her in the hospital another second. We packed everything up - super excited to get our baby out into the real world and into some fresh air.
The last few days have continued to be such a wonderful time for us. Elida seems to be transitioning really well into her new home - and seems really content sleeping in her little moses basket next to our bed. We both agree that it feels so right to have her around... it has been 3 days now and we can not remember what it was like before she was here.
Seth and I are now responsible for her PT and OT in the lag time before we are set up with outpatient appointments - but again this seems to come naturally. Any time she is awake we are playing with her and encouraging her body to move in new ways. She needs to gain another pound or so before they will do the GTube surgery, we are thinking it will be another 2-3 weeks before that happens. Recovery should only be 3-4 days back in the hospital.
The doctors are still looking for a diagnosis for Elida and will do a muscle biopsy at the same time as her surgery. From there they will do a neurological study... they remind us that it quite important to continue to look for the cause for why Elida has the physical weakness that she does - as it will certainly help us know how to encourage her to be her best in the future.
Seth will continue working for a few weeks before he takes on the thrilling job of stay-at-home-dad. We are both happy and thankful that Elida will have her daddy around all the time to take care of her! In the meantime, we are still looking for support. For those of you who are close by and would like to help us by bringing a meal - you can sign up for a day/night that works well for you at www.takethemameal.com - last name Pegman, password Elida.
Thank you for standing by us as we venture into a new season of life with our little one. We continue to feel your love and are so very grateful for all your prayers and well wishes for Elida's health. We are so excited to share her with you in the coming months as she grows stronger.
Blessings to you all,
Elida Seth and Amelea
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