...how the journey to mend our son's broken heart changed our family forever...
Friday, March 26, 2010
Blowing this joint
I'm not sure I should even dare to write this and tempt fate, but...word is, discharge is in our not-so-distant future! The surgeon decided that, because he is eating so well, a g-tube is definitely not needed for now!!! YAY! In light of, that, they're starting to talk about sending us home. PRAISE GOD!!!
We still have a few hurdles to cross before discharge happens and would appreciate your prayers to help this happen:
1. The insurance company has to approve the Sedenifil prescription (it's a drug to treat pulmonary hypertension, but because it's also known as viagra, the insurance company tends to challenge it a bit LOL).
2. They need to get home oxygen set up for us.
3. Bodie's cardiologist (Dr. Kim, the one I saw my entire pregnancy) needs to be brought into the picture and confirm that she's ok with him going home on 1L of oxygen (they typically don't release these kind of kids on such high amounts of 02 apparently) - there's a chance she could say she wants them to do a cardiac catheterization here at the hospital first. If so, that would delay our discharge for sure.
4. Although Bodie loves to eat and is eating like a horse, he's not gaining weight and that's a big issue for cardiac patients - they're looking at increasing the amount he's allowed to eat as well as running a caloric test on my breastmilk to see whether they need to fortify with a higher calorie formula). Pray that they figure it out and he starts gaining quickly!
I would also like to ask for specific prayers for the following heart kiddos:
1. Isaac, Bodie's roomie - he is struggling with oxygen saturation levels as well and they can't figure out why. Please pray that his lungs would heal and the doctors would be as stumped by his progress as they were by the cause of the oxygen requirements to begin with!
2. Jacob, a sweet baby boy born Tuesday with HLHS. He is having a particularly rough start, as they discovered after birth that the HLHS had done a number on both his lungs and kidneys in utero. They're fighting a lot of complications preventing them from even getting to his Norwood surgery at this point. He has already been through such much - please pray that he continues to be a fighter and that he can get to surgery soon! Pray also for his mom Kathy as she deals with all of this all while recovering from a c-section.
Thanks as always for your prayers and good thoughts!
Dusk & Amy
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I can only imagine the excitement and apprehension you have at the moment...I pray Bodie starts to gain the chub very very quickly and everything is in working order for him to go home soon. He's such a cutie pie:)ReplyDelete
Amy, this is terrific news and how exciting!!! I will pray that Bodie gains weight and becomes a chunky monkey but what is so ironic is that he is a "big" baby by NICU standards but in all seriousness I hope he is able to get bigger so he can home and you can be a family and big sis, Sierra, can help out with baby duties! I am sure she would be thrilled!!!! All the best, Love Nicole, Kurt and LexieReplyDelete
That is wonderful news. Praying that all goes well and that you are home soon. We have been fortifying since Hope was born...now we are on formula only (mixed with a ton of oil for added calories). Our babies are usually slow and steady with their weight gain, but they are strong as can be. I pray every night for all the heart babies and will add Isaac and Jacob to the list.ReplyDelete
Praise God! I'm so excited for you guys. There's nothing more exciting than finally going home after being in the hospital for so long. Praying for wisdom as you work on getting Bodie to gain weight. MCT oil is also a good supplement for adding in calories.ReplyDelete
Hang in there! You guys are doing incredible.
Know whatever decisions are made are best for Bodie. There is a great team up there and these kids can be complicated (and you know that oh so well! =o)ReplyDelete
Prayers being said often and thoughts never-ending. Let us know specific needs at home too please!
Love, Sara and the Hale Family
I started crying the other day when I read your post about how well your little man is doing.... Praise be to God ! We are praying so much for you all and I am so thrilled that he's drinking so much of your yummy milk... nothing like Momma's milk !! We love you guys and are praying that Bodie will be home soon cuddling with his Momma, Daddy & sister !!!ReplyDelete
Love the Stanfords
Wow, Amy and Dusk, your little guy is really hanging in there. He surely is loved by many. My prayer is that he will go home only when things are really ready for it. I know you are looking forward to that day so very much and yet want to know that you can handle it with a stable baby. Keep hangin' in there yourselves. I know God will sustain you through it all. You are such great parents. Love you, Carolyn ThomReplyDelete
Amy, He looks so cute in clothes!!!! What a handsome little man. We'll be praying for wisdom for the Doctors and peace for you whatever their decision. Stay strong!!! Love you Amy! ErinReplyDelete
You have more courage than I to mutter the words "discharge." We ended up calling home "Disneyland." And Disneyland will come for you soon and when you get the phone call, you will inevitably feel totally unprepared, no matter how prepared you think you are. At least, that's how it was for us.
But now, having him home, I want you to know that you have nothing to be scared of. Trust your mommy instincts and just love him and the rest will fall into place. Hang on to your faith, your husband, your daughter, and little Bodie. Soon this will all be a bad dream and all that will remain in your memory is your beautiful boy :-)
I can't wait to receive news that he's home and in your arms. Until then, I continue to pray...
God Bless my sweet baby Bodie. I love him. May God bless him and keep him away from harm. May God heal him completely! I believe for health and a loooooooooong life for Bodie. Praying for him (and you guys) daily... so happy to hear the good news, and I love the beautiful pictures. Sending kisses to baby Bodie and sweet Sierra, and God bless you all. See you Thursday (bringing you some food)...:o)ReplyDelete