Just about life in general

Hi everyone. Elijah is doing really well. We have been lucky so far and avoided illness! He is eating baby food now and weighs 12 lbs. He is growing fast now and looks really good, I'll post some more pictures soon. He is smiling and starting to laugh a little. So far things are looking good developmentally, he is just a little behind his adjusted age in a few things. When I put him on the floor he can wiggle his way around, he is very active.
We still have plenty of doctor appointments. His pulmonologist may be taking him off the apnea monitor soon, because all our alarms are false now. He has to go back to the surgeon because his hernia is back. I took him to another surgeon who said if the hernia was back it was because there may have been pelvic floor damage during his last surgery, that is just great. I do know if he needs additional surgery I am going to fight having the same surgeon do it, and I know I don't want him at Johnson City Medical Center. I'm hoping the surgeon in Roanoke will agree to do it.
Alex is doing great, I can't believe how smart he is at 2 and a half. He knows his ABC's and most of his colors, he can count to 12, and he can count to 5 in Spanish. The child's vocabulary amazes me, he talks like a 4 year old. He scares me sometimes, I mean how am I going to keep up with him! I hope to have him reading by the time he is four. I am looking forward to Christmas this year, Alex is so excited about it that I already put our tree up. I am thinking about taking him and Dillan to Dollywood, I know it's not cheap but they are only little once! I love to see him so excited!
My classes are keeping me VERY busy! I didn't realize the amount of work involved in getting a Masters, I guess I should have though. The University of Phoenix is great, I should have done this a long time ago!
I can't believe Dillan will be in high school next year, where does the time go? Well I hope my rambling didn't bother you to much, I guess I should run, I have alot to do!

Lucas

Here is a picture of baby Lucas, he died from NEC in the NICU on May 6, 2008. We also lost his brother David who was born still. They are in the arms of the Lord.

The Angel's kiss
Our dear Christ knew the way was rough,
and his precious body was not strong enough,So, He called an Angel and sweetly smiled,
as He laid in her arms a darling little child.
"Be very tender with him", He said,
"I took him gently from his mother's arms,
I did not mean to cause his mother any pain,
and he was not taken in vain.
He had such tiny hands and feet,
he was so helpless and dear and sweet,
he could not walk earth's stormy way,
so I brought him back to Heaven today."
He will grow beautiful and strong,
for the ones he left behind who care.
His family is very pained at heart and over and over their teardrops start.
But we'll love and keep him, you and I,until they come to meet her by and by.
A notion? Perhaps, but I'm sure of this:This sweet child woke and smiled at the Angel's kiss.

Alex

Hello, everyone. Elijah continues to do well. He weighs almost 11 lbs now and is developmentally acting like a 2.5 month old, which is where he should be. He smiles and coos a lot, especially at his big brothers. He is starting to sleep through the night now, which is wonderful for me! His reflux still bothers him and he has alot of gas and is starting to have issues with constipation. I'm trying to get his doctors to change his formula. They don't want to because he is on the high calorie preemie formula. But, his older brother had to go on Alimentum due to protein and milk allergies, so I think that is the problem here.
Halloween is coming and Alex is going to be a buccaneer. His costume is adorable! I'll post some pictures. Dillan my big boy is going to help his Nana pass out candy. My niece Cassie is going to be a Southern Belle, her costume is beautiful!
I've been very busy with school. I'm taking online course for my Masters in Elementary Education, very time consuming! But, I'm home anyway so it works out! Wish me luck. Continue to pray for my family.

illness and RSV

Well we had a little scare. Alex (our two year old) started running a 103 degree temp. Of course we were worried about him and about Elijah catching his illness. It turns out he had an ear infection and so far Elijah hasn't shown any signs of sickness, so pray he won't! Speaking of infections RSV season is upon us, I found a neat form letter for parents to send out about RSV, so I'm including it in this post!

RSV letter and awareness:
Dear Family and Friends,
We're writing regarding a very important matter: RSV. For those of you who plan to visit us over the next few months, and even if you are not, please take a few minutes to read this letter. We want to start by saying thank you for the outpouring of support we have received from everyone. So many people have done so much for us, and every bit of help we have received truly is appreciated. We are experiencing
the biggest challenge of our lives, and we're lucky to be surrounded by so many family members and friends who have shown us so much love and support. We'd also like to share an important topic that we recently discussed with our babies' pediatrician. If you are not aware of RSV, respiratory syncytial virus, you are among the majority. Most people have not heard of RSV, even though nearly every child has had the virus by age two. For full-term babies, RSV typically is not any worse than a common cold, but for preemies, the virus can be quite different. Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchiolitis, and other sometimes fatal complications. Our
baby was born premature, is a multiple, and had low birth weight; these are among the highest risk factors for contracting RSV and developing serious complications. This website offers a great visual comparison of a preemie's lungs compared to the lungs of a full-term baby: http://www.preemiecare.org/LungsTrees03-4.pdf
Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping our child safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child. Studies have also shown that infants pose an even higher risk of spreading RSV to others. You may ask, "Can't they fight it off and build up their immune system? Kids need to get sick, right?" The simple answer is NO. Since our baby was pre-term, he did not acquire the necessary immunities to fight off infection.
If he contracts RSV, he could be hospitalized and develop serious complications. We'll be asking our visitors to follow a few guidelines to help prevent the baby from contracting RSV or any other illness.
We ask that all visitors do the following:
1. When you arrive, please wash your hands and use hand-sanitizer as needed before touching the baby.
2. Please, if it is possible, get a flu shot.

3. Please refrain from coming over if you are currently sick and have not been symptom-free for at least 5, if you live with someone who is sick, or have been in close contact with someone who is sick.

4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a
preemie's lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke
exposure.

5. If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV
season.

Unfortunately we will not be attending many events during RSV season. Our goal is to make it through this and the next RSV seasons without the baby contracting RSV or any other serious illness. His lungs are still very fragile until he is 2-years-old. Please understand that this letter is not meant to offend anyone, just simply to provide an explanation. We hope you understand, and we appreciate your help keeping our baby safe.
We are also providing several resources with additional information about RSV below.
http://www.preemiecare.org/rsv_resourceshtm.htm
http://www.preemiecare.org/rsvfaq.htm
http://www.preemiecare.org/rsv2.htm
http://www.mostonline.org/preemieBB/viewforum.php?f=82


Love and best wishes to all!
Elijah's family
Brian and Denise, Dillan and Alex

Just another crazy day....

Hello everyone. Oh the day I had today, someone actually backed their car into my double stroller as I was putting my babies in the van (thank God they were not in the stroller). I don't know what was wrong with that girl, my stroller was sitting so close to my van that if it hadn't been there she would have hit the van. People need to pay attention to what they are doing. So impatient, I would have gladly moved it if she couldn't wait for me to buckle the car seat in, she just had to ask! Believe it or not no damage was done to my stroller(as far as I can tell), maybe it was worth $250 after all! The physical therapy office gave me a big run around, they had given me the wrong time for therapy, come to find out they were mixing our name up with someone else, Pruitt instead of Privett. Then when we finally made it to the appointment there was no referral for Speech. The doctors office was supposed to schedule for O.T. not speech, so the day was wasted and very stressful. I've requested home health care to do therapy in the home!
Elijah is doing good. His reflux is pretty bad though, he is on medication for it now! We have so many appointments. He is in Physical Therapy and will also be getting occupational therapy as well as early intervention services. He has an appointment next week for his cardiomyopathy. Everyone pray that we get a good report. I'm putting it in God's hands!
He is off oxygen now, which is wonderful news for us! His big brother's are doing great and adjusting to their new brother. It is so funny what kids pick up on. My two year old is becoming wise beyond his years, he can tell you everything about a hospital and the doctor. He has also developed a fear of nurses!
Yesterday I was upstairs with Alex when Elijah's Apnea alarm sounded, as I headed down the stairs Alex(my 2 year old) looked at me and said, "he's still breathing". And of course he was, we have so many false alarms now. I think the pulmonologist plans on taking him off the alarm soon. I'm going to be so nervous about that!
Elijah weighs 10lbs 2oz now, that may sound very small for a 6 month old, but it is a long way from 1lb 8oz! I don't even try to look at him like a 6 month old, I see him as a 2 month old and that is how I expect him to act developmentally. He is very alert and coos at us and smiles alot now, especially at his brother. He is such a blessing!

Recent Pictures

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!

Smilebox

Make a Smilebox scrapbook

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!

Another NICU update

Hello everyone. Just another day here at the Tampa Ronald Mcdonald house. It is another stormy day, and so hot! Well the nurse case manager called this morning to get info about The pediatrician that we'll be following up with for Elijah, she also said that she will be making some other appointments for specialists. She informed us that because we live out of state that she will most likely not be able to send us home with equipment, this upsets me a little because we are looking at a 12 hour trip home with a sick baby! If the insurance would have approved the transfer then we wouldn't have these worries right now. I'm going to send them a nice little letter. I have put a call in to my pediatrician to ask her opinion on travel with the baby.

Elijah is now eating 10 mls from a bottle, so far so good! God is great! I'm still waiting on them to move him to the next row, where most of the bigger babies go. I'm a little nervous with his open crib, he is so close to ther other babies. It seems like every time I go in visitors for the other babies are practically right over Elijah, that is all I need is for him to get sick now! I'm going to bring that up to the doctors this afternoon. Well It is almost time to go back and feed the little guy, his latest weight is 6lbs 9.5 oz!!

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!