Laura here. Ira has had a good couple of days. He has slept alot because his body is working so hard. The doctors have been able to increase his milk intake to 10cc an hour (there are 30cc in an ounce) and he is tolerating that ok. They have also decided to start turning down the Flolan very gradually as long as he can handle it. He is down from 20 to 18. The nurse on duty last night said he was awake alot so I instructed him to get his days and nights figured out before he comes home.
Sophia has spent the last couple nights out on Long Island with her cousins(Joe's sister and her family). They are moving in a couple weeks and this was her last opportunity to hang out with them. She will miss them but her mommy and daddy will miss them even more. We have been so blessed to have family an hour away.
Sophia has spent the last couple nights out on Long Island with her cousins(Joe's sister and her family). They are moving in a couple weeks and this was her last opportunity to hang out with them. She will miss them but her mommy and daddy will miss them even more. We have been so blessed to have family an hour away.
posted by jch at
9:16 PM
3 Comments:
Laura,
I am so glad for another good report on Baby Ira. I remember feeling amazed sometimes at what the night nurses were able to accomplish on their shift. In the peacefulness of the night, they seemed to be able to really focus on the goals of weaning the babies from meds and oxygen, etc. It was a neat reminder about how our God never sleeps.
I have to trust that the timing of Joe's sister's move is in God's hands, but part of me is still whining just a little on your behalf :-). I am prayerful He will strengthen you and Joe and provide His family to fill the gaps.
Thank you, Lord, for these answers to prayers -- that Ira is showing signs of getting stronger and closer to going home. We pray for You to complete this process and bring this family together in their own home soon. Please comfort Joe and Laura as they process the move of family, and provide brothers and sisters in Christ who will minister to them.
Please accept our thanks, and our praise to You, the Creator and Healer of little Ira. Amen.
Beverly McCallon
Joe & Laura,
Patrice shared your webpage with me. My name is Krista and my daughter Gabriella was born on 3/19/05 with left-sided CDH. We live in CT, but we delivered in Boston and she is still currently at Children's Hospital Boston. Patrice and I "met" through the CHERUBS website. As I read your updates and browsed through your pictures, it was almost as if I was reading about and looking at my little Gabby. It's amazing what these little babies have been through. I'm not sure how old your Sophia is, but we also have another child, Alyssa, who is 2. We struggle everyday with the fact that we are never with both of our children at the same time. Laura, I felt your pain as you wrote about being in the park with Sophia, but always feeling as if a piece of you was missing. I said the same exact words many times. Gabby just turned 2 months old yesterday and the doctors have finally said they think we may be able to go home next week. She was on ECMO for 7 days and a ventilator for a month. She also had a collapsed lung and had to go on CPAP. Gabby is now off her oxygen and they just took her feeding tube out this week. She is taking all of her feeds by mouth and doing really well. We are certainly not out of the woods. As you already know, it is a very bumpy roller coaster ride. However, it looks like we are going home with no oxygen and no feeding tube, so please stay positive and strong. There is hope and a light at the end of this really long tunnel. Please feel free to email me. I truly believe that we are all connected for a reason and that we wouldn't have made it through this long journey without one another. I wish I could post a picture of Gabby for you, but if you would like to see one, just let me know and I can email it to you.
Best wishes,
Krista Tuohey
Laura,
It was good to hear from you. I'm so glad Ira has had good days. We have really been praying for you guys here in Arkansas. We are on our way to see Jeremy and then to Ash Flat,but will still keep checking the blog. We will miss you guys Memorial weekend but will keep you in our prayers and will look forward to seeing all four of you guys next year.
love you, Brenda
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