Jules seems to be doing GREAT at home!!! Thank you all so very much for your prayers! They told us to expect a seven day hospital stay after surgery, but of course it was hard for us to fathom that after seeing Jules take so much longer to recover from her first heart surgery. Needless to say we were thrilled to go home on day six post-op! She really did SO well (minus the very difficult first night, which is definitely understandable). Thank you again for how your support, love, and prayers have encouraged us through this time! We have been so happy to see Juliette sleeping well, happy, and needing less frequent doses of pain meds... One of the most exciting things weve seen is how Juliette has been doing with her feeds. She has been tolerating feeds - even from the gradual start up after surgery! (I dont know if you remember, but at one point after her first heart surgery we had to reallllly back off with her rate and volume.... running her feeds at an extremely small amount of just 1mL over 3 hours!!! Thats literally a drop!!) This time we left the hospital still on 24hour continuous feeds and now shes been doing great as weve condensed her feeds to run over only one hour out of every three! The MOST surprising thing has been Juliettes desire to put food into her mouth. I might have told some of you that since the beginning one of my great hopes for Juliette was for her to be able to drink milk like a typical baby. It might seem like an insignificant thing to have a strong feeling about, but even so its been something that I have carried for her in my heart. From the very start I knew she had many challenges, and my heart ached for her to experience contentment and fullness via the natural infant instinct to suck and drink. The teratoma in her mouth and intubation immediately after birth delayed any kind of experience for her to suck and drink milk, her cleft palate added another element of challenge. We have tried off and on working with therapists, first working with a binky to encourage her sucking instinct, and later adding tastes of milk. These sessions were few and far between and often put off because of higher health priorities for Juliette. Add to the mix Juliettes problems with reflux, and repeated intubations, lots of suctioning of oral secretions, and two oral surgeries (increasing her gag reflex exponentially) ...and you can see that she has faced quite the wall when it comes to oral feeding. The therapist even suggested that she might like to avoid milk because she has had so much trouble with reflux and vomiting. Surprisingly, as of the day before yesterday, she showed us the exact opposite!! She was actually straining to reach her milk as I got it ready for her pump. I thought, well, I guess we could try a bottle...? And she went for it fiercely--just like she knew what to do all along!! I really feel its a specific and miraculous answer to prayer to see her drive to taste be so awakened all of a sudden! Praise God! We are so thankful!! Despite all of the obstacles and challenges, my desire for Juliette to use her mouth to eat and drink hasnt subsided - in fact, it has even grown. Its my constant prayer for her. Needless to say we (and especially me!) were more than excited to see Juliette so driven to put things into her mouth to taste lately!! We would love for you to pray with us, asking God for His continued favor for Juliette in this specific area of eating & oral skills. He has helped her progress so much so far!! Going from zero tolerance of anything in her mouth (extreme gagging, even causing her to vomit) to now eagerly trying anything is SUCH a big turn around for her. A major milestone!! This journey has included patience & persistence on our part, letting Juliette take the lead & following her cues, and we know God will continue to cover her & provide for her as we journey on... (Psalm 91:4) All of our hearts are happy to be at home together--this time for a longer time--and Juliettes heart is able to work at being happy at home a little bit more easily now.
Posted on: Thu, 13 Nov 2014 03:56:52 +0000
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