Elijah update

Well Elijah is doing great. He actually gave his big brother a REAL smile, actually a few of them, this makes me so happy! He now weighs 9lbs 11oz. He is still such a little guy! He came through his hernia surgery without any problems. I had problems with the rude nurses at Johnson City Medical Center Pediatrics. The doctor thought Elijah was getting an infection, and anyone who has a preemie knows how scary that can be, just to hear those words, well she ordered an antibiotic and 6 hours later he still hadn't got it. Of course I kept questioning the medical staff, so after I asked for the 3rd time the charge nurse literally told me off, she was extremely rude and had me in tears. From then on it was a nightmare, they never did any blood work before or after surgery, I mean come on, this is a preemie with a history of severe anemia and multiple blood transfusions! My mother had to call a patient advocate just to ensure that the nurses would come in and do Elijah's vital signs. Not to mention the same nurse was rude to me the next night, I'm thinking about filing a complaint against the hospital. I'm just thankful Elijah did as well as he did. I cringe to think of what would of happened if something had went wrong.
Talk about poor nursing care. Now I know why God didn't answer my prayers for a transfer to this hospital!! Sorry for the vent....
On a happier note Elijah has been off oxygen for about three weeks now and he is doing great. I'll post some pictures of him without the oxygen as soon as I locate my battery charger for my camera! We are getting him set up with early intervention and physical therapy. He has a definate side preference and his head is getting really mishapen! I put him on the other side and try to prop him but he finds his way back to where he wants to be.

My homecoming blog....

HI Everyone, this is the blog I posted on my myspace when I got back home. Alot of new things have happened since then as well, so I'll update on that soon, just so busy......

Hello everyone, sorry it has been so long. We are finally back home, we have been home for a few weeks. Things have been pretty wild. It is really hard getting used to having two small children in the home. It is alot of work, especially having one who is on Oxygen and a apnea moniter, which never alarms unless it is 4 a.m. Elijah is doing well, he weighs 8lbs 1oz (Alex's birthweight). He is not like a four month old, but more like a newborn, which developmentally is right where he should be. Considering he lost 4 months in the womb! I am concerned about his continued need for oxygen but he has a great pulmonologist in Roanoke. Alex is a great big brother, though he wants to be a little to helpful at times. He has a few little jealous moments as well. I missed Alex so much the past few months and am so happy to be home with him, he is absolutely delightful, and so smart! He acts like a 3-4 year old as opposed to someone who has just turned 2! I'm so proud of him, I just hope I can keep up with his needs, since he can't go to preschool because he may carry something in to Elijah. That is something else that is hard to get used to, Elijah can't really be around a lot of people until after the winter. Then maybe he'll be able to visit and go to church. A cold could put him back into the hospital and we don't want that! I know alot of people want to visit, but we are trying to keep Elijah's exposure to people low right now. Of course the frequent doctor visits drive me crazy, I think that is where he will end up catching something. Strangers want to touch him, but we just have to stand our ground! Dillan is doing great too, he is a 8th grader this year, I can't believe it. Where does the time go! Well I know I am rambling but I wanted to give you a update! I'll post pictures soon!

Well of course the insurance denied the request for the transfer, so I talked to the doctor today. She wants to try and wean him off the oxygen, but she said we would have it to travel home with if it is needed. She also said we could have a monitor as well. YAY! That will make me feel so much better! At least I have the chance of a little sleep on the trip home. We should be discharged sometime next week, if nothing major happens. I'm praying it will be smooth sailing from here on out. Please everyone pray for us too! I'm a firm believer that prayer works. I look at Elijah now and see how far he has come. He is a living testimony to the power of God! He is a living breathing miracle! I know that we still have a long road ahead of us but just the fact that he is eating like a big boy now, and gaining weight is a miracle! Unless you have seen it yourselves you can't imagine how fragile and tiny this baby was. The baby dolls I played with as a child were huge compared to this little guy. He was so small we couldn't even touch him at first. The most gentle of touches hurt him. You could see through his skin it was so thin and fragile. He is so sweet! I will always miss his brothers, but I am so thankful to have him! I have three boy's now (and 2 in heaven) and that will be all for me! But, I know I am truly blessed by God to have my boy's, and I am thankful!

Elijah's big brothers

Here are pictures of big brothers, Dillan and Alex!

Could we actually go home soon?????

Hi everyone. Just a quick update. Elijah is doing great, he is eating good now. They are talking discharge. We are still not sure if they are going to discharge him to Johnson City Medical Center or with us. The Neonatologist is going to do a peer to peer with the medical director of the insurance company on Monday. So everyone pray real hard that we get the transfer. It would be so much easier and alot quicker. The baby will be going home on oxygen so it will be safer as well. As everyone knows my whole family is in Virginia, so I'm thinking about going ahead and making flight arrangements for Brian to fly down here so he'll be able to ride back home with me. I'd rather be on the safe side and have someone here in case they decide to discharge. Elijah's due date is fast approaching, the babies were not due until August 1st. Can you believe they were born in April, four months early! Elijah is such a fighter! He is my little tough guy!

Moving right along....

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!

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