Elijah Update...

Hi everyone, it has been a while. Elijah was recently sent for a MRI of his head since he hasn't had one since he was born. The doctor called me today with the results. The good news is that that most everything looks the same as it did with his last MRI. There are some concerns that he may have a some excess fluid, just a small amount though, but something his doctor wants evaluated further. We are now going to be sent to either Duke or Wake Forrest, depending on who can get us in the fastest. I am so worried about this, Elijah has been through so much.



I'm just upset, and yes I'm angry. I'm not angry at God, I am just angry about the way of this world. I am angry that my child has suffered so much, I'm angry that there is such a thing as Twin to Twin Transfusion Syndrome, that I lost two children to it, and that TTTS is the reason Elijah still has problems. I'm angry because my life is so stressful. I get angry when I see people going about their lives with their healthy children and I hear them complain about the silliest things. I don't want to be this way, I understand that I used to be just like those people. Once, not so long ago my biggest worry was whether or not I would get a A in one of my classes, or whether or not my child would be a football star or a genius.

Now before you get mad I am not saying that you or anyone else for that matter doesn't have a right to worry yourselves with things like this. I am saying just be thankful if that is all you have to worry about. Give God the thanks he deserves for all of the blessings you have. In spite of it all I will still Thank God for my blessings, because I do have blessings.



I am thankful, because I know that even though things seem bad, they could always be worse. I know God has a plan for Elijah's life, I know that Elijah is a miracle and that he will be used to glorify God, he is living proof of the fact that YES, God does still perform miracles.



When Elijah was born he was pretty much as close to death as anyone can get. He couldn't breathe on his own, he was brought through life threatening illnesses and surgeries, even when man had given up hope, God brought Elijah through. I will never stop praising God for all he has done for Elijah, and I trust him to bring us through this valley and to the top of the mountain once again!

Elijah several months ago at a birthday party....

Finally a UPDATE!!

Like it tends to do, life goes on...

Elijah is doing well. Both boys have bad colds, hopefully it's not the flu. I am debating if I should take them to the doctor today. If it is the flu I want to catch it in time for medication, if not I have probably exposed them to the flu by taking them to the doctor. It is hard to know what to do, when my oldest son had the flu last winter I didn't take him to the doctor in time for antivirals and he had a really hard time.

On a lighter note, Elijah's therapy(s) are going great. He is babbling away now and he is pushing up on hands and knees and trying very hard to crawl. He commando crawls all over the place. He is almost sitting up on his own. He weighs 19 lbs now, he has come a long way from 1lb 8oz! So far the only lasting effects of his extreme prematurity are the developmental delays. His cognitive skills seem good. He can find his foot now on command, he is a very smart baby! He shows no signs of the dreaded (at least dreaded by me) CP as of yet! The doctor did hear a murmur at his last checkup, but I refuse to worry about it, God has healed Elijah's heart once and HE is in ultimate control!

I thank God every day for the miracles he has worked in Elijah's life.

Our three year old little man is doing well. He is now in therapy for very slight Gross Motor Delays. He will be getting evaluated in the future to see what may be going on to cause his sensory issues. His therapist also seems to think he may be color blind. He is extremely smart, and learns easily,but can't seem to get his colors. Somehow the possibility of colorblindness upsets me more than the thought of him being diagnosed with Aspergers. I'm not sure why this is. I just look at all the colors that surround us, and it makes me want to cry to think he may not be able to see some of them, and may never be able to. I just keep remembering, God is in control!

Little man waters the flowers he just planted!

Brothers and best buddies!

This is just to cute!

Wow, it has been a long time. My life has been so busy, and crazy. Elijah is doing quite well. He is still being stubborn about sitting up though! He is getting intense therapy, physical therapy twice a week (one time in the home), occupational therapy once a week, and speech therapy twice a week. Wow! That is like four times a week outside the home. Throw in biweekly visits to Cranial Technology (3 hours from home) and occasional visits to his many doctors in Roanoke (2 hours away), and now wonder I feel so tired, no wonder my three year old is so grumpy.


Would I be a horrible mommy if I put my three year old in a good daycare program for the rest of July? He would probably thank me, poor little guy!


I know I need to put some more pictures up, but I haven't even taken any recent ones, so I'll throw some old pics up and I promise I'll take some new ones soon!


Stay tuned to this blog, I have a feeling things are going to get crazier, and therefore a lot more interesting! Nothing I want to post about now though, I'm sort of waiting to see how things turn out!


Here are those pictures:

Me and Elijah in the NICU last summer.

Me and Elijah at home a few months ago.

Little man looking all serious, he actually looks this way a lot!

Me and little man, poor baby looks tired in this photo!

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!

David

I have always felt bad that I never put a picture of David on here. Since David was stillborn we only have one picture of him, I wish I had more but my surgery was so bad and my husband was so upset at that time. We didn't even have our camera with us, since we had no idea we were going to be in Florida for four months and that our babies would be born there. I hesitated to put this picture on here since it was taken after his death. But he was such a lovely little boy, perfect in every way. So I wanted to share him with you. It helps to imagine him and Lucas in heaven, perfect little children laughing and following Jesus. I know they suffered so much in their short time here, David was left in the birth canal for 4 days and he fought to live, I agonize over that sometimes. But, I wasn't myself due to the Mag and whatever else they had me on. The doctors did not want to deliver him because they said it would mean the death of my other boy's. But God is victorious, Praise God they will never hurt again. They were perfect and will remain that way, sin will never touch them.
I am thinking of them a lot lately, since we are fast coming up on their birth date. I thank God for Elijah and I know we will be with his brothers again someday!

A Big Event is coming up!

Hi everyone, it has been a long time. Elijah is doing well. We have a appointment for him in Charlottesville at UVA Medical Center in Charlottesville next week. He will be seeing a Cardiologist that specializes in Pediatric Cardiomyopathy. Elijah will be 11 months old on March 12. His current weight is 16 lbs. He is still recieving PT at home and we are looking forward to the Spring and his first birthday in April!

I have started a team, Team Elijah, Lucas, and David for the March of Dimes, March for Babies. This event is coming up in May. I am looking for sponsers, please visit my page for more information, it can be found at http://www.marchforbabies.org/personal_page.asp?si=5060648C-5A65-43A7-ABB8-1B659217D747&prefill=

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!

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!