Hello everyone. Well first I'll give you an update on Elijah. He is doing well, he is now eating 40 mls every three hours from a bottle. That is a big deal for him, especially with his bowell issues. He is tolerating the feeds great so far! One concern right now is that he is retaining alot of fluid. He is so puffy. The doctors think it is from the (HAL) the fluids that give him nutrients, he has been on it pretty much since birth. It can cause problems with the liver, which should resolve when he goes off of it and the doctor said he may be off of that tommorrow! They just have to make sure that the fluids don't effect his lungs so they are keeping a close eye on that and giving him meds to decrease the fluids. That is why we can't seem to get him weaned off the oxygen.
About the going home situation, it is sort of at a standstill (but I'm still trusting God)! The doctor told me he wanted Elijah to go home on a monitor and maybe even oxygen, the problem with that is the monitor companys here don't want their stuff going out of state! So the doctors and social workers have told me to appeal the insurnace companies decision not to transfer Elijah, the doctors have wrote a new order for him to be transferred to JCMC as opposed to me traveling 12 hours with him. Then he could be discharged from JCMC as soon as possible. So everyone please pray for us to hear something from the insurance very soon about this. Last time it took 3 weeks for them to just tell us no. I don't want to have to leave my baby here but am going to have to get home soon. School starts back in August and I miss Alex and Dillan so much. My mom is sick again(pray for her) and Brian is struggling to try and find work! I know God will see us through this!
Even when the baby comes home it will be a long road for us, we wont know if he has any lasting effects of prematurity for months or even years. But, whatever happens, Elijah is a gift, he is so sweet and precious and I know I have been truly blessed by God, just by the fact that he let us keep Elijah. I miss his two brothers and what might have been, but it's like my mom told me, even if I live to be 90 and my kids are living their own lives, I'll always have those precious babies waiting for me in heaven! What a blessing, that God found me worthy to love those two little boy's even for such a short time here on earth, but for a eternity in Heaven!
About the going home situation, it is sort of at a standstill (but I'm still trusting God)! The doctor told me he wanted Elijah to go home on a monitor and maybe even oxygen, the problem with that is the monitor companys here don't want their stuff going out of state! So the doctors and social workers have told me to appeal the insurnace companies decision not to transfer Elijah, the doctors have wrote a new order for him to be transferred to JCMC as opposed to me traveling 12 hours with him. Then he could be discharged from JCMC as soon as possible. So everyone please pray for us to hear something from the insurance very soon about this. Last time it took 3 weeks for them to just tell us no. I don't want to have to leave my baby here but am going to have to get home soon. School starts back in August and I miss Alex and Dillan so much. My mom is sick again(pray for her) and Brian is struggling to try and find work! I know God will see us through this!
Even when the baby comes home it will be a long road for us, we wont know if he has any lasting effects of prematurity for months or even years. But, whatever happens, Elijah is a gift, he is so sweet and precious and I know I have been truly blessed by God, just by the fact that he let us keep Elijah. I miss his two brothers and what might have been, but it's like my mom told me, even if I live to be 90 and my kids are living their own lives, I'll always have those precious babies waiting for me in heaven! What a blessing, that God found me worthy to love those two little boy's even for such a short time here on earth, but for a eternity in Heaven!
1 comment:
I'm glad the doctors are looking for a solution for the ride home. If he needs oxygen and monitors, then he needs them. Transferring him sounds like the best idea. If that doesn't work, then remember to check on just having the stuff sent to your house and then shipped from there.
It sounds like things are tough for your family in other ways as well. Looking for a job is so stressful. I hope the insurance company gets with the program soon so you can all be together.
Elijah looks so big and chubby! Eating 40mls is amazing. My girls never got the hang of that in the hospital (came home on ng tubes). Eating is a huge step. Going home is usually soon after.
I look forward to your updates. Take care - Johelen
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