Revisions

      So, this re-covers some of the last post, but my precious lil dude had his first MRI, he was sedated for it. It was looong though. We arrived at 11:30 am and did not leave until 4:30 pm. After the MRI we had to book it to our second appointment with our neurosurgeon to go over the MRI results. This was all very nerve racking considering we have never seen what Elijah's brain looks like before. Usually it's not something parents would worry about. You go to your 20 week ultrasound they look at all your baby's body and your usually fine. But, since we have never seen it we had to clue what to expect. Anyways, our neurologist is known to be one of the best ones around and he is really good, but he is NOT the best at bedside manner. He is very quick. You need to know your questions when he comes in and ask em quickly before he leaves. He said Elijah has something called schizencephaly. Google it if you want a detailed explanation. But it doesn't really mean much. Babies can be anywhere from perfectly fine to..not perfectly fine. Elijah is doing really well right now. He also has something called Chiari Malformation II which is when the cerebellum basically gets pulled down into spinal cord. 80% of children born with Spina Bifida have it. Not all are symptomatic. If they have not had any symptoms by a year and half you are usually not going to have any. Praise the Lord we have not had any yet. Hopefully we won't either. One problem that we have had with Elijah's shunt is that it has been puffy around it. The Dr recommended a revision to see if we could fix that because well, it shouldn't be doing that. The revision went well he told us to place a sweat band on his head to try and get the rest of the puffyness down. It hasn't worked yet but then again we have not consistently been able to do it. The whole thing makes me nervous in general. Having to wear something like that around your head and then having it slide down. We tried it with a hat which seemed to be working but it's just so darn warm right now!

 I had just finished telling Brad that it has been nice because since his vesicostomy surgery he has had no UTI's..2 days later literally he got a UTI. So now we are battling one of those which is not usually too big of a deal but we are having a really hard time getting him to take the medicine. He gags, throws it up, pushes our hands away when we try. I have tried putting it in while I am BF him I have tried putting it in a bottle with juice or formula. Nothing works. So I will have to call the pedi tomorrow if I can't get anything in him. Other then those two things he is doing SO well. Our infant specialist that comes over once a week says she is amazed at how well he is doing. Due to his low tone he is pretty weak but he has been almost rolling, reaching for toys, and lifting his big ol' cute head up to look at us with his big blue eyes! 

Lilly has started Kindergarten and she is loving being around the kids and so far it's been a great experience for her. She got to take home "Ms. Honey Bear" a stuffed bear with her own outfits and she had to help MS. Bear write in her journal about her experiences at our house. Journaling is like blog posts before the internet for all the kiddies out there :-) She's such a smart girl and is picking up on the spelling and other activities they have been doing. 

Grace is enjoying the quiet time at home, and I think it's giving her a chance to express her creativity as well. She loves holding and talking to her baby brother and hearing all of Lilly's Kindergarten stories as well. She is our little sweetheart, but also a three year old, with all of the fun that that entails!

We love all of our gifts from God!

                         

                                  A Happy Boy Always

Well, we had our second Shriner's appointment. A whole day that started at 7:30 am and went
till 4:30 pm. It was pretty exhausting. The day started with a ultrasound on Elijah's kidneys for his reflux. After the ultrasound we met with the "Spina Bifida team" to go over everything. When you have kidney reflux there are different stages of it being 1 not bad and 5 very bad. Elijah's was at stage 4 or 5. Everything we were doing at home was not enough to make it get better. They suggested a surgery called vesicostomy. They basically move the bladder below the belly button and make a cut for the bladder to drain urine from, which relieves the pressure from his kidney's. He will have this for two years and then they will put it back. Before we decided whether or not he would have this done he had to go have a different procedure done called a Urodynamic testing. They push fluid up into the bladder to see if it re-fluxes into the kidney's. And it did. It rel-fluxed so bad they didn't even get a good chance to look at his kidneys. So being the way that that test went, we opted to go ahead and do the surgery. Elijah has also had two bladder infections that were happening right on top of one another. He would get fevers and fussy. So, a week later we had the surgery. We feel that it was the right move and has made our lives a little less stressful and easy. He went in for surgery and did wonderful. He was laughing at the nurses right up until they took him back. When he woke up he had his precious-as-ever little, smiling face. Here are some photos from the surgery day. We only had to stay one night. 

Smiling at the nurses

Hungry and getting ready to go back

Still sleeping in recovery

I had a really good nap!

Grandma and Elijah

Ready to go home!

The surgery was a few weeks ago and he has healed very well. It's never fun seeing your baby go through surgery, but I know it is to help him and that the Lord has his hand on my lil' boys life. I'm always ok when I am at the Doctor's hearing everything, but then when I get home that is usually when everything sinks in, and I have a hard time with it. I am just so incredibly blessed by Elijah I can not imagine our family without him. His sweet personality brings such joy into our family. Since Elijah had his surgery he has had no bladder infections praise the Lord!

 We did have his MRI this past week. It went OK, but it was a long, long day for all of us. He had to be put unconscious with Anesthesia, because he is too cute and wiggly to hold still for an hour of imaging. The anesthesiologist at the testing facility was the same one from the hospital where he was born, during his first surgery to close the Spina Bifida! He was getting fussy, and they put the medicine in without us realizing it, and before we knew it, he was out. we were in shock of how quick it all was. When he woke up, he was crying and out of sorts for a few hours, but by the end of the day, he was back to his usual chipper self again. You just can't keep a good baby down! The MRI went so long we had just enough time to drive to his next appointment with the Neurosurgeon, the one who has done all of his brain and back surgeries, to discuss the MRI results and his progress.  

So hungry he's even holding a pacifier

 And devouring daddy's face!

 Wearing his little Ki-Man-o (and quoting Shakespeare)

 

So out of it...

Our little man (born Awesome) is developing well, but the Neurosurgeon said we will not have a good estimate of his future abilities until he is about 3 years old, but getting MRI and other diagnostic procedures along the way will help them and us understand his progress along the way. We can see that his brain is growing and filling the space in his head, and we just pray and trust God that he will keep surprising us with everything he can do. There has been a bubble of CSF fluid leaking out from around the shunt (under the skin) where it exits his skull, it has been there for a few months. We had called on it, and they never seem to want to do anything, until the neurosurgeon said that it may mean that some of the 60 micro-tubes in the shunt can be clogged with the excess protein that his body produces in his CSF, due to his neural-tube issues. It is functioning, or we would have seen worse signs, but they are most likely going to be scheduling a shunt revision surgery to replace it in the next week or two. It is sad to think that we will keep having surgeries come up in his life, and sad to know it hurts and he can't tell us. We rejoice that God gave him to us, and that we have medicine given by Him that can help him through life.

Here is his latest achievement. We're so proud of our little handsome buddy fella!

                                      Summer so far

   Elijah is doing so well! He is meeting with a infant specialist and a occupational therapist twice a week. We are working on lots of tummy time to get his head nice and strong so he can hold it up! He is doing so good. He is smiling, cooing and laughing! He loves his daddy. The girls just love to sit with him, talk to him, kiss him, and cuddle with him. He will be getting an MRI in the middle of July. We may possibly be bumping the date up due to the fact that his shunt has not been draining properly like it should. His soft spot is full and bulgy when we get him up. It shouldn't really be doing that. Elijah had his first vacation to the lake.Since is was suppose to be 108 here we decided the smart thing to do was FLEE the opposite direction of the heat!! It was just a day trip but he pretty much slept the entire time. So- I would say he enjoyed it. I mean, who doesn't enjoy a vacation where alls you do is sleep? We are doing another day trip this Saturday to the beach. It will hopefully be a nice day. 

We have tried multiple times to plant tomatoes in our backyard and it usually is awful. The dirt, I mean clay is super fun to deal with. So, Brad took on the task of building a planter box. We planted two tomatoes, a squash, and transplanted a pepper plant that wasn't growing when we put it in the ground. So far so good.We are so excited about the possibility of fresh tomatoes from our garden. That means lots of  my AMAZING homemade tomato soup, recipe to come soon this summer! Here are some new photos!

He is holding onto is moose toy!

Sleepy boy 

Beach day

Notice the HORRIBLE dirt around it. 

                                  Settling back in to routine

             It's been a while since we've had an update. Just as life was getting back to the "new" normal. Wendy had come down with a pretty major gallbladder attack, which we learned is very common after just having a baby. Unfortunately she jaundiced and she got pancreatitis from having a stone stuck. They missed it the first time she went into the hospital so by the time she had to go back in (Easter morning) it was already pretty bad. After almost a week they finally removed it. She went home feeling much better.
 Now that we are all home again the girls are finally starting to settle back into routine. Elijah is doing wonderful.  He being evaluated next week to see what programs he will need for physical therapy and such. He is such a joy in our lives. He has started smiling and we can't even express the feeling of joy when you see your son smile up at you for the first time. It gives you the feeling of things are going to be OK. He is looking at us now too we are so happy and blessed that he is doing so wonderful. God is so good!
                                                           

           

Home! - or - Life after birth

Elijah - My God is Yahweh! 

We're home. Where do I start? It's been a very long road or so it feels like. We came home about a week and half ago. We must apologize for not updating on here like we thought we would. It has been so extremely busy with Dr appointments and taking care of the kids that we hardly have a few minutes of quiet time. Even writing this now I am sure I will be taking a few breaks. And our baby boy is now 6 weeks old today. As some of you may have heard or may not have heard, while we were in the hospital Elijah got an infection. We were set to go home, but they said they had found a membrane "flap" in his bladder that needed to be broken before he could go home. So, we stayed a few more days because the urologist was on vacation. Come Monday when Elijah is suppose to have the membrane broken, the Dr. came in to tell us that there really was no membrane to speak of. Praise the Lord. I don't remember which morning it was but Brad went up to check on Elijah only to discover he felt warm. They take the babies temp's every few hours, but when we're around we'll take his temp and let the nurses know so they can track him. He took his temp it was 101.5, he came down to tell me that Elijah had a fever and they were starting to do blood tests. Some of the results came back abnormal- his body was showing signs of infection. I think it was the next day where they tapped his shunt (pulled some fluid from the site where the shunt is). I came up just after they had done this and was told to talk to the Dr. (luckily my mom and sister were there) she said that the fluid they had pulled from his head was cloudy and they think it may be meningitis. 

I don't even have words to express how I felt at that moment when she was telling me this. My heart just dropped. I know what meningitis is and I know how deadly it is. How could our baby have this? I felt like we had endured all we could handle forever and now this. We called everyone told them to pray. It was heartbreaking looking at my sweet boy sleeping not knowing he possibly might not even survive this. After tapping the shunt they knew they needed to pull it out because it may be causing infection (apparently germs cling to the plastic in the shunt). While they were in the surgery removing the shunt they also took off bone and skin from his skull to tighten up the loose plates. When he came back from surgery, the neurosurgeon said it looked like the infection was just at the shunt site which means not really meningitis but a shunt infection. They had placed an external drain in Elijah's head which took fluid and was replaced with more. This little contraption scared me because none of the nurses were familiar with it and they were taught how to use it as they came on shift, Elijah had to be level with the drain or it would drain too fast. After this surgery he looked like he was in a lot of pain, I can remember this zoned out look he had in his eyes that just made me cry. The external shunt in his head remained there for 7 days till the 72-hour cultures they did came back normal. Finally they replaced the shunt. A couple days later we were moved to our little corner in the "going home soon" room. I think 4 or 5 days later we we're finally discharged! Praise Jesus. I know there are a bazillion more details we could share but then this would be very very long :-) so there is the short version. Typing all this out makes me very emotional just remembering all that has happened and what we have gone through.

Looking back we can see the Lords hand in every aspect of our life as we are/were going through this. We have amazing families. Both helped out tremendously with watching our girls and support. We were also lead by God to an amazing church about a year ago, they have helped us out in numerous ways. There was no membrane flap but if we had been discharged and they had not held us longer for that flap, we may not have caught the infection as quickly at home. The Lord is so good and he truly does provide for us. We prayed for Elijah to be healed and he was. We were worried about not having a second car for all the appointments and the Lord provided. We were worried about not being able to stay close to Elijah during all of this and the Lord provided. Brad's job is ending in a couple months but we know that the Lord is going to provide. We could not have gotten through this alone, and we never were!


 Now that our whole family is back together life has been so busy! Elijah is doing well. He had a ultrasound on his brain yesterday and we are awaiting results on that. His sisters are just in LOVE with him. They love having a little brother and we love having a little son!  Thank you everyone for praying for us in the first part of our journey with our family!

 

 

 

 

The life and times of Elijah James and our family

As may come as a surprise to no one by now, Elijah James was born on February 9th. He was delivered by C-section at 12:40pm. As we were told and prepared for, he was born with Hydrocephalus and Spina Bifida. We knew this was coming and we have been praying for a miracle healing for him every day. We realize that the miracle is here, and he is a beautiful and wonderfully made baby boy.

He had his back surgery to close up the nerves, wrap muscle around the spinal column their and close the skin Friday the tenth in the afternoon, then the next morning, he had his shunt surgery to help drain the excess fluid from his head, to his abdominal cavity, where he reabsorbs it. Both surgeries went very well, and we found out we have one of the best neurosurgeons in the country, possibly The best! God does not make mistakes!

He has been recovering wonderfully and we are so proud of him and his progress. His back is still healing and his fluid has been draining dramatically for the last week. His skull, like any newborn is loose plates that we will have to watch and keep aligned until the skull sutures fuse.

We still do not know what the lasting effects will be, but we love him so much, we enjoy his little cute face and big cheeks and Lil chubby self. God knows His plan for this boy He has given us to raise, but we know he is our boy who is eating and kicking and showing the nurses and doctors how being a baby is done!

We are cautiously optimistic he will come home soon, but until they give us the discharge papers, we will just nod and say OK. Every nurse and doctor had their own idea about what we need to do, and we keep pushing back if we don't believe it's best for him and for our family. At this point we are learning how to care for him, which isn't too different than most newborns, just a but more careful.

Big sisters have been able to meet him a few times now and they love him and want to hold him. They miss mom and dad and we miss them so much, we can't wait until we are all home again. They have been home with some amazing friends that have taken turns caring for them since he was born, so being on routine and in familiar places has been great for them. Brad's mom even came in from out of state to spend a few days with them and spoil them, as all loving grandmas do!

Wendy's mom had been staying with us at our room at the place on the hospital grounds for families of patients, and helped Wendy get back on her feet while Brad has been working during the day until the baby is home. This help and support from her mom has been a huge help for our family being able to concentrate on helping baby in the hospital, taking Wendy to appointments, putting up with our frustrations and helping us through a very hard time. Words or thankfulness can not repay the love she shows our family continuously, but thank you Sheryl!

I am trying to find a way to start this post, and I keep rewriting my first sentence. As a husband and father, it brings me so much joy to see my family grow in happiness and joy and peace, and I have been trying to encourage all of my family through this difficult time, even though I feel like I am the one who needs encouragement. When I found out my baby boy was going to need surgery and that he would have challenges growing up, my first thoughts were what quality of life he would be able to have. I was scared for him, that the joys of life would not be experienced by him to the same level that I have had, or that I have seen in my daughters short lives thus far. I feel helpless because I cannot change whatever happens when my son is born in a few days. As a guy who's job it is to fix things and help people, this is very hard for me to take. I have been challenged in all of this, to give all of my trials back to God and trust Him with his little life.

As Abraham was called to bring Isaac up to be offered to God, I feel called to offer control of my son's life to God, who is, was, and always will be in control of his life. This isn't working for me. I keep struggling with my own fears and praying that God will miraculously heal my boy, or that the surgery will heal his back 100%. I have felt like I am not strong enough to be a dad to this little boy. I probably never will be. God's strength has helped me lead my family in this time, and God's strength will get us through whatever happens in the next few days and weeks, as we go into the operating room for the birth of "bob" (as our friend calls him, for lack of a shared name).  I have had so much support and in so many ways from friends and family, and our church family that has been overwhelming. 

Our family is definitely a work in progress, and always will be as we grow on earth, and grow in Christ. I'm not a pastor, evangelist or public speaker, but I wanted to share what has been on my mind and heart as we're preparing for this next step. I am determined to provide my son the best care and best attention I can give him, so that he can have the best life possible. He will have a good life because God doesn't make mistakes, and God cares about this little life who has no idea what is about to happen to his warm safe place. I know we will have some tough times ahead as we're in the hospital for who knows how long, waiting to take him home. every time I pray for him, I ask that God would give him healing, or give me strength to love him as he needs to be.

Thank you for being with us, hugging us, encouraging us, sharing with us and praying for us. We know we're not alone here or in Heaven.