Poor, poor, me, lol!

Well a good thing is that Elijah is feeling much better, he is a little grumpy because he wants his baby food back, I am still waiting on a call about that referral for a swallow study, you would think that the pediatricians office would try and rush something like that when a one year old baby has been cut back to only formula thickened with rice. I'm confused about this anyway. Elijah has passed this study once before. Is he more likely to aspirate on baby food than formula?

I am also EXTREMELY frustrated with the insurance issue about Elijah's DOC band. It has been over a month since the initial appointment where we were informed that Elijah badly needed the DOC band, and that time was very important in this matter. After being told that our insurance "never" denied coverage for this we were told that coverage was denied. Then we are told the medical director of the insurance company was reviewing the denial and we would hear something by last Friday. Well today is Monday and when I call I get "we haven't heard anything yet, we'll call you as soon as we do", and of course I say "thank you for your time". When I wanted to say: "Well Then Do Something, Call them Now, Find Out What The Hold Up is, This Is My Baby's Head we are Talking About, This Is His Brain That YOU Said Would Not Develop Right if He Didn't get It, and I Don't Have Several THOUSAND Dollars to Get It For Him, I'll be lucky to have the gas money to get him down there for the weekly fittings!". I really wish I would have said that to them. Oh well, maybe tomorrow because I plan on calling them every day until I get a reply! Just like I will call the pediatrician back until I get the appointment for the swallow study. They better not tell me that the swallow study will be like in July or something, I doubt Elijah will live off of only formula until then!

I'm also VERY frustrated with the fact that I am trying to clean for Elijah's birthday party on Saturday and can't get anything accomplished. Maybe if I throw this computer out of the window, and then call my non-existent babysitter, maybe then I can get something done!

It really amazes me how little help we have been offered since this tragedy in our lives. Because losing two babies and having one in a NICU for four months with many medical problems is a tragedy. Being 12 hours away from home, family, and children during this time was a nightmare, it wasn't like I could leave the NICU and go home to my bed and my other children. I couldn't go to my church and receive love and support from my church family. We have been back home for 8 months. There have been very few offers of help. I am thankful for those friends and family who have offered help to us, you know who you are! It is true what they say about how when a tragedy strikes you "find out who your friends are"! I am of course thankful to God because even if everyone else deserts us, I know he will never leave or forsake us, and for that I am eternally grateful!

Well enough of me feeling sorry for myself, there is a lot going on in my life that I don't mention on here, though I might talk about it some day. I'm sure it plays into my pity party as well!

Pray for me and my family, pray for baby Elijah, because we are truly in need of your prayers!

My reply ....

Here is a copy of my reply to the article and comments mentioned in the last post. It is just the way I feel and comes from my heart. I hope I don't offend anyone, the majority of the nurses who cared for my boy's were wonderful! But, early on there were a few struggles and hurtful things said. The reply I wrote was mainly due to the fact that one of the commenters on the article said "My issue is that even if your baby is one of the 18% that survive and one of the even smaller numbers that have no sequela, parents have no idea what kind of torture they are signing their baby up for when they say do every thing. Nurses try to be as gentle as possible obviously but nearly every moment of these babies existance is taken up by painful disruptive treatments that keep them alive. It is cruel and in any other population it would not be tolerated."

Here is my response:
I am the mother of a surviving triplet who was born at 24 weeks. If I would have stopped care as the doctors suggested I would not have my happy little miracle baby who is almost a year old and doing great! As for the comments made about torture. There are children undergoing painful treatments for cancer every day and I don't hear anyone saying just to let them die! As far as NICU staff goes, most were wonderful. Then there were those who acted angry at having to save my baby. I had rude comments made to me by nurses about "people treating their animals better" and was put under a lot of pressure from Doctors, until I finally put my foot down. What I am trying to say is that NICU staff needs to treat families with respect no matter what they decide, after all it is not your child. Maybe if you put yourself in their shoes, what if it were your child in the NICU? Or what if it were your child facing months maybe even years of pain and cancer treatments? Would you still feel the same way? If you don't want to save babies then maybe you shouldn't be working in a NICU. One thing is obvious these tiny babies fight hard for their lives. I held one of my boy's as he died and watched him gasp for breath, he died fighting. I will never forget this as long as I live.
Please be kind and watch what you say, you never know who may be reading your words!

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!

Hello everyone! Well time seems like it is moving so slow now! Elijah is doing well and eating, and he is tolerating his feeds. He is retaining fluid though, but his urine output is great. I hope nothing is wrong. I have decided that I am going to push really hard for a monitor and maybe even oxygen for the trip home. I can't believe these people would actually send him out of the hospital without this equipment. He is still having bradycardia episodes where he drops his heart rate and stops breathing. From everything I read and hear this may not resolve for another month or so. I'm sure the insurance is pushing for discharge since he has had his surgery, not that I want him to stay in the hospital, I just refuse to travel 12 hours (we'll drive 6 stay overnight and then drive 6 more) without the equipment. He had a episode last night, he tends to do it in his sleep. After all we have been through I refuse to put my baby in harms way due to the ignorance of the hospital staff and insurance company. When it all boils down to it, it is all about the money, I have learned that much from this experience!

NICU notes....

Elijah is doing so good. We may even get to come home in a couple of weeks as long as everything continues to go well! He has recovered nicely from surgery and is starting to eat now. He is able to take 5 mls from a bottle! He has come so far from 1lb 80z, he now weighs 6lbs 8 oz! I hope and pray he continues to do well so that I can go back home. I miss the mountains and it is hard to be 12 hours away from everyone I know and love. But, I am thankful to God for bringing Elijah so far. The NEC could have killed him. That is what took his brother Lucas. I find that when I finally let go, and put it all in God's hands, that's when things seem to start going better! I'm so thankful to have my little guy, and his big brothers! I know God will continue to bless our family!