Thursday, June 25, 2009

At Last!

My heart sings as I write this post. In the last few days Judah has continued to make progress. Every day the dr. tells me there's not much to report. There's always little things to discuss, but what a relief and joy to finally be past all that was so scary and urgent in the beginning. The last couple days have primarily been focused on Judah's feeding. We have all kinds of help! The lactation specialists are working with us on breastfeeding, the developmental specialist is working with us on suck and swallow and eating from a bottle. Judah still gets tired very quickly, but yesterday he was able to take 12cc from a bottle with a special nipple for his cleft. (And let's just stop and thank Jesus that Judah's cleft palate is not severe...it's "not too bad" in the words of our developmental specialist!!) I got to hold him for part of his bottle feeding yesterday, and I was just so thrilled to see him sucking and swallowing without any problems! In that moment I didn't care that he wasn't nursing, because I knew that I was watching him get closer to coming home:) This morning I was able to work with the lactation specialist and nurse Judah a little more. His latch/suck have improved and he was able to get a couple swallows! Baby steps, yes, but huge triumphs at the same time!! At this point he's on a "pathway" in his care plan. He's able to be orally fed up to 4 times a day. 30 minutes before and after his scheduled feeding times his nurses will start watching him for cues of waking up and being hungry. Then he'll get fed "on cue"...for now, by the developmental specialist. He gets 60cc of milk; so whatever he takes orally gets subtracted from that total, and the rest he'll get through the tube when he tires out. If he just sleeps through that scheduled feeding time and the hour surrounding it, he automatically gets fed through the tube. I'm excited that he's in the transition phase to cue feeding. And I'm really excited that he's finally starting to wake up more! We've seen his eyes open a few times now:) The dr. will be watching him to see how he progresses in his oral feeds through the weekend. Then, depending on how he's doing, we may be learning how to feed him through the NG tube so we can bring him home. So, here's where we're at with everything: his urologist is pleased with his kidney/bladder function and his output, and determined that he can be monitored on an outpatient basis, with another ultrasound (assuming he can stay infection-free with the Reflux) around his 1st birthday. His endocrinologist will be re-evaluating him on Monday, looking at his Thyroid and Cortisol levels to make sure that he's stable on the dose of meds he's on, and then the neonatologist will be talking to him about a discharge plan and follow-up. (Is that not a beautiful word, "discharge"?) The neurologist & neurosurgeon are content with where he's at and will monitor him on an outpatient basis, with another MRI in a few months. The plastic surgeon will do the lip repair around 4 months, the palate around a year, and the extra fingers at one of those times. And the feeding. If he continues to progress and improve, even if we need to learn how to do some tube feeding, then - can you hear the singing? - he may be able to come home by the end of next week!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My beautiful, beautiful, precious boy might be home in my arms in just days. Not another month, not a few weeks, days! So, of course, we pray towards this end. I'm trying to keep my eyes focused on Christ in this, realizing that His plan might be different. Maybe Judah won't be home that soon. BUT GOD can do anything; He can certainly bring our boy home! Home! The ache has dulled slightly with the knowledge that there is a light at the end of the tunnel - at last!

8 comments:

  1. Stephanie R25/6/09 3:58 PM

    That is great news! I am so happy for you all, still praying, and hoping that Judah will be able to come home soon!!!

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  2. Bethany, we are rejoicing with you, and thanking the Lord for Judah's progress! What a homecoming he will have!

    mary

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  3. I am praising and praying with you!! It is wonderful to hear about how God is working in your family!

    Jodie

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  4. Heather Swanberg25/6/09 5:15 PM

    Thank you for the update! I knew things might start moving fast this week... sometimes they just all need to get their thoughts on the same track.

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  5. I'm so so happy you've seen his eyes, that was the little marker I've been praying for you. Praise and praise again.

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  6. Oh what fun to rejoice with you in this! This week was VBS at our church, the Ronstrom kids went with us & LOVED it. We can't go tomorrow because we have a very special family time planned. What a wonderful week and now this report from you! Thank you so much, Lord.

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  7. GOD CAN do anything! Oh what wonderful news! I am singing praises with you, because it's those baby steps that keep you going strong! You'll do fine with the NG tube, we had one for Christopher, there not that hard. What a way to to start my day, I am glad I came on to see how Judah was doing, and now I have a wonderful blessed feeling! Through prayer anything is possible and we will continue to pray for your family!
    God's love and mine, Diane Rice

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  8. I'm clapping and cheering out loud! Hooray! Praise God! I'm so happy for both you and Judah!

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