Serial Casting with Club Feet

We have started the casting to fix Carter's club feet. We have found a doctor in Cedar City to do the casts which we are ecstatic about! We now don't have to drive to Salt Lake every week to get them changed which is a blessing. Dr. Delcore has set up a plan with our Doctor up north to do the casting and then when we go up north our other doctor will change them and see how they are doing.

His first couple days it was a little rough because they are so heavy that he had to get used to them. But he is doing so good now and we are on our second castings. His first one made some improvements on his feet so that is good.

Here are some pictures of what the casts look like:

Good Luck Little Buddy!! You Are A Rock Star!

My Wife's Experience Part 2

Day 4

He was finally latching on by himself which made my stress and emotions go down.  Because he was doing so well with eating they were able to unhook him from his IV, they still had the tube in his hand in case he wasn’t getting enough fluid again and had to hook him back up so they would flush his IV every couple of hours.  He was still on his lights and hooked up to all his other monitors and still had his Foley in.

Day 5

Every day he was seen by a group of pediatricians, a neurosurgeon team, a neurologist, and spina bifida specialist, and because he was born with clubbed feet an orthopedic surgeon team and a physical therapist. It was really nice that they all would come to our room and just check on him and go over things with me and answer all my questions, the frustrating part was I never knew when they were coming so a lot of the time I would miss them because I was out of the room. Every time I needed to pick him up to feed him I would call my nurse to help me get him out of his bed because he was hooked up to so many things I didn’t want to pull something out.  I also didn’t have to change a single diaper the whole time I was there because he had his Foley in and because he had to lay on his side and had what they call a mud flap, that’s this flappy plastic thing that keeps his poop from going into his incision on his back but because of all those things the nurse would change all of his diapers as well but I would always feel bad pushing the button to say he needs a diaper change or I need help getting him in or out of his bed, but I was very grateful they were there to help. They removed his IV completely this day and I was able to hold him vertically.  He still couldn’t lay on his back and was still hooked up to all his monitors and still had his Foley in. 

Day 6

Our final day!!!! I was so excited to hear that we were could be discharged today as long and everything still looked good.  He was off his lights and holding his heat all by himself, he had his Foley removed, they taught me how to catheterize him for the first time I was really nervous about this I thought I would hurt him and that I wouldn’t be able to get it in and it would take me a long time and pee and everything would be everywhere I was very stressed out about his whole processes.  I was able to do it successfully the very first time it was a great feeling knowing that I could do it!!  We would catheterize him 2 times that day four hours apart to measure how much we were emptying out of his bladder and if everything looked good we could keep his Foley out and just do intermittent catheters and because he was only letting out very little fluid we only have to catheterize him once a day.  He was also off all of his monitors that day, so I was able to hold him without anyone’s help that was also a great feeling!  We had to do a renal ultrasound, they would check his kidneys and his bladder, his right kidney was a little bit swollen and had a little bit of fluid in it, but everything looked really good no major issues.  We would have to come back and test his bladder and kidneys when he was 2 months old to see if he is having reflex or any other problems. So far so good, it’s looking like we are going to be able to leave today and go home. I had to pass off that I could do CPR and Choking.  He had to have his Hep. B shot and then we had to fit him for a car seat bed because he couldn’t sit in a normal car seat because of his back.  They also did his hearing test that day which he passed and they had physical therapy come and show me what to do with his feet and hips, how to help stretch him out until they could get casts on his feet to correct his clubbed feet.  We had seen all the doctors and everything looked good.  We were able to check out at 2:00 P.M. that afternoon. We picked up his medicine and hit the road!! 4 hours later we pulled into our driveway for the first time in 3 weeks!!

Going through all this was hard at times and overwhelming and sometimes you think how am I going to remember to do everything that he needs, and take care of everything else going on in my life, but it really all comes together.  I have a wonderful husband who helped me get through all my fears and struggles and sometimes I still have overwhelming moments and he is always there telling me everything is going to be ok and that we will get through this together.  I’m so extremely blessed to have him by my side helping me raise our now 3 children.  I know that we still have a lot to learn and to battle through but I know that this was probably the hardest part and now our little Carter is here and we love him so much just the way he is!

                “I don’t want my children to become what I want them to be,

                 I want them to become everything God created them to be.”

                                                                                                                -Jon Gordon

My Wife's experience at Primary Children's Hospital Part 1

I asked my wife to guest blog and talk about her experience at the hospital while I was there and also while I was gone. Here is the first part. And as always feel free to share!

My husband has asked me to guest blog on this post and tell about my experience at the hospital when we had Carter.

Day 1

We went to the hospital to start my induction at 1:30 A.M. He was born at 1:51 P.M. that day. He was transported to Primary Children’s Hospital where they would perform his surgery and stay during his recovery.  I was still a patient at The University Of Utah Hospital so they would come and check my vitals every hour and roll out my tummy and check my uterus. I was still hooked up to an IV and my husband had to push me in a wheel chair over to the other hospital every time I wanted to see my baby.  Our hospitals are joined together by a sky bridge so it took about 15 minutes to get from my room to my babies room. This made it hard to be able to go see my baby.  My baby couldn't eat anything that whole night because he would be having his surgery first thing the next morning. He was hooked up to an IV, and monitors that were watching his blood pressure, heart rate, and oxygen. He had a light bed that would help him hold his heat.

Day 2

We were able to walk him down to his surgery and talk to his surgical team they would call and update us on his surgery, when they made the incision and every hour and a half. After the surgery was over our neurosurgeon came and talked to us in my room and told us that he was in recovery and that they would call us when we could come visit him.  After his surgery he was still hooked up to all his previous things and now had a Foley catheter as well.  I was able to hold him for the first time. It was always hard to get him in and out of his bed with him being hooked up to everything and he also had to lay flat and couldn't be on his back, we always had a nurse help us get him in and out of his bed.  I was able to nurse him for the first time that day. I was still a patient at the other hospital so we were only able to spend a couple hours a time with him because I had to go back to my room for them to check me. This made it hard to get the skin to skin contact and to nurse and get him to latch on because I just wasn't there to be able to hold him. 

Day 3

I was discharged at 12:00 P.M. and was able to just be with my baby for as long as I wanted!  This was probably the hardest day.  My husband had to head back home where we live 3 hours away so I would not see him until our son was discharged from the hospital and able to go home.  My two other children had spent the day with us and said goodbye to their dad and it was time for them to go home for the night.  I was spending the night in the hospital with my son so we could get him to nurse.  My other kids were very emotional having to say goodbye to their dad and then saying goodbye to me.  I was so overwhelmed with my husband leaving and my girls crying because they wanted me and my baby not latching on and nursing I had a full on breakdown.  The nurse told me to go get some dinner and she would feed him a bottle and we would try and nurse when he was ready to eat again.  It did help to get out of the room and just have some alone time to myself but I was still very emotional the rest of the day.  My nurse was amazing that night she got up every two hours and would try and get him to latch on.  It usually took us 15 minutes she would have to get some milk out in a tube and just put that on me until he would finally start sucking and eating on his own.  

A baby that had the prenatal surgery

When Frankie Lavis was born last August, it was her little legs – moving and kicking – that her parents focused on first. While still in the womb, their baby had been diagnosed with spina bifida, a disabling congenital disorder in which the bones of the spine do not close properly around the spinal cord, leaving the nerves within exposed and vulnerable to damage. Spina bifida babies are often born with paralysis of the lower limbs, among other disabilities.

But some 10 weeks earlier, while still in the womb, Frankie had undergone a radical new operation to repair her spine. Her mother, Gina Beddoe, is the first British woman to have this groundbreaking surgery on the NHS – and the sight of their daughter waving her chubby legs around suggested her nervous system was working normally.

I thought this was a good look into what we would have gone through if we would have done the prenatal surgery. 

http://www.telegraph.co.uk/health/children_shealth/11234681/Spina-bifida-surgery-inside-the-womb.html

What is Spina Bifida Video

I thought this was a good video to kind of explain spina bifida from a doctor.

First Check Up

Well our first check up was a success. It was interesting to go to this appointment because they let you see everyone in one sitting. So you sit in a room for 3 and a half hours and the doctors and nurses just rotate through. The doctors and specialists we saw were neurology, neuro surgery, occupational therapist, physical therapist, urology, dietician, spina bifida nurse, pediatrician, and a social worker to help with financial questions.

The occupational therapist came in first and gave us some new stretches for when he is in his casts to help move his upper body. After that Neurology came in and talked about his headsize. He has gone from 4% to 36% as far as his head size. He has jumped some lines on his percentage so it is growing a little quickly but that is normal for a spina bifida child. But we have to keep watching his size because of the hydrocephalus. Then the orthopedic surgeon came in. He talked about Carters club feet. His feet are mid range when it comes to club feet. He also has some hip issues because of how he was scrunched up on the inside. So his hips are tight and so his feet come up to his chest. With stretches we are hoping that gets fixed. With his feet we are having some issues with what to do.

We have to do casting and with that we have to replace the casts every week. This becomes difficult having to drive up there every week especially in the snow which will be coming soon. Also they only do the casting up there on Thursdays. That doesn't work with my schooling. Most of my classes are on Tuesday and Thursday so this causes a little bit of a problem. There is a doctor in St. George that has done some but we do not know how experienced he is. So we are going to try him for a couple casts and see if he is able to do it. If the casts do not work we will eventually have to do surgery. We are hoping and praying that the doctor can do the casts and they work. 45 mins to St. George is much better then all the way up to Salt Lake.

Urology came in and talked about the problems that he could face. They are doing a procedure next month to test whether he is having reflex in his bladder. This means that the urine is pushed up from his bladder to his kidney and can cause infection. They will put dye in his bladder so they can see where the liquid goes and check that with an x-ray.

Overall so far so good though with this check up. We knew that this would be a process. There will probably always be something going on for the first couple years because of the challenges he faces. Thats OK. We will keep pushing through.

If you would please share this with your family and friends on your facebook or twitter.

Sharing a post.

we all fall down sometimes, and yet… by erniebufflo

This Spina Bifida awareness month, I’ve been super focused on highlighting the utter ordinaryness of most of our life, even with SB in the middle of it. Because that’s the truth. Most of the time, most of our life feels very very normal. Toddlers be toddlers, which means that I spend my time reading books to both of my girls, feeding both of them meals, carting them both around town, doing up seatbelts, putting up ponytails, snuggling and reading stories and kissing booboos.

And then we go to the park with our friends for a picnic. All the kids swing. All the kids slide. All the kids run and play. But only one of them is constantly falling down, and, it turns out, she’s starting to notice it too. Yes, Claire walks with the help of her braces, and we are so so so very thankful for that. But it doesn’t erase all difference. Because it’s fall. Because of the damn acorns. Because they roll underneath her unsteady feet, and they destabilize her weak legs, and they take her down again and again.

http://www.huffingtonpost.com/sarah-sweatt-orsborn/we-all-fall-down-sometime_b_6062336.html

I thought this was great and the rest of the story can be read at that link. Its nice to be able to read other peoples experiences as well. 

Adjusting to life with a baby with Spina Bifida

Well baby boy is home. Carter got home on Wednesday the 15th which was a big surprise for us. We didn't think he would be home until Friday or Saturday of that week. I was ecstatic to have them home. Not having my family around was extremely hard. Adjusting to having him has been a little different then most children.

Because he had surgery on his back you can not lay him on his back at all. They want all the blood flow to his back so that it will heal well and not get infected. It makes it challenging to change diapers, get him dressed, and holding him. When he put him in the car he has to ride in a special bed car seat so that he is on his stomach. It is kinda different and makes it a little more challenging to take him places because he isn't just in his car seat to take into places. We have to measure and check his head every day for growth because he could develop hydrocephalus. What is hydrocephalus? To put it simply the fluid that is around the brain has to have a place to drain. If you have hydrocephalus yours does not drain which means you have "water on the brain." He would then have to get a shunt. So far so good. We check his soft spot on the top of his head and measure to make sure there is not significant growth that occurs. He has been measuring good and his soft spot is still flat.

His bowels may or may not have issues. So until he is old enough for them to test his bowels we have to use a catheter on him every night. Right now he is going pee on his own all day. So when we empty him he barely has any in there. This is extremely good. If he continues on this path he may not have any bowel problems at all. This is the hardest part for me. As a guy it is extremely hard to stick something up there. Even if I know that we have to and it is helping it makes me cringe every time its rough.

His feet are the only thing that we are waiting on seeing what we have to do. We have to go back up on November 7th to Salt Lake to figure that out. They wanted to do casting but if they do that we have to go up to Salt Lake every week for 2 months. This is obviously very hard since he live 3 hours away. After that he would get braces for 4 months and then he will have nighttime braces until he is 4. So this will be something that will take an adjustment and we will need to get started. Right now we are hoping we can find another option so we don't have to drive to Salt Lake every week for two months.

The girls have done very well with adjusting to him. They love him so much. He has three moms as my wife likes to say. Sometimes they love him a little to much and don't understand he isn't old enough to play just yet. So far the adjustment has not been increasingly hard. As we continue to figure out everything that needs to happen with him it will become easier and easier.

Should I get an abortion?

First off I would like to state that in no way would I have ever aborted my child because of a defect. I do not believe that it is something that you should do unless there are very extreme circumstances. I was asked to do this post by some people. So if someone is wondering what they should do with their baby that was just diagnosed with Spina Bifida they maybe could get some help from this post. The reality in this world is that people do think that this is something that just needs to be done. When they find out that their child has Spina Bifida, Down Syndrome, or any other kind of birth defect that could make their life and the child's life harder they choose to abort. 9 in 10 babies are aborted that have Spina Bifida So why not us? Why didn't we decide to?

He is my child. That is my little boy in there. The love that I had the moment that I knew there was another little human in there has accompanied me to this day. I have two special little girls in my life and so I didn't mind if I had another girl, or if I had a boy it didn't matter to me. Was it hard when I found out that he had Spina Bifida? OF COURSE! It may have been one of the hardest moments of our life. I look at him now and he looks like me. How could I give that up? 

What about him? He is going to have a rougher life because he has Spina Bifida. Yes he is. But why can't I as a parent teach him to overcome those challenges that he may face in life? Isn't that my job as a father to help my children through the troubling times in their life? This is no different. We as parents have to help our children to be the best that they can be. Everyone is different and has different talents. He may not be Derek Jeter because he may have some physical challenges. But that doesn't mean he can't be an astronaut, a physicist, or a musician. I was born blind in my left eye and it affects me at times. The doctors told my parents that I would probably always walk weird, never be able to play sports, and probably have some different challenges in my life. I walk just fine, I may not be the greatest athlete but I played different sports all the way up until high school. I had challenges sure, but I overcame them.

Another reason is I am adopted. I could have easily been aborted and my mother chose a different option. I am extremely grateful for that. I have a beautiful family now and could not imagine not having them. I am eternally grateful that this did not happen to me. There is always the adoption route. Even if you may not think someone out there would want this baby you are going to have. I promise you there is someone out there to love that little guy or girl. 

And since I am sure at some point someone reading this is going to be a woman and maybe wants that perspective I am going to let my wife write a paragraph or so on why she didn't want to abort our little boy. 

ANN: Obviously my husband and I are pro-life we were both raised and believe that abortion is wrong but I know that there are many reasons people choose to have abortions and that it is a big decision so if you are considering to abort a pregnancy make sure you have consulted with people that can help you make this decision because it is a very personal decision and it is something that will affect you for the rest of your life.  

When we first found out that our baby had spina bifida it was a lot to take in what is spina bifida? And how is it going to affect me. Some of my first thoughts were selfish thoughts, what is my life going to consist of, taking care of a special needs child? Would I be able to still do things that I wanted to do? Next came my families needs, would I be able to be a good mom to my other kids and still be able to take care of a special needs baby? How would it affect my other kids? Would they feel neglect or anger towards us as parents or toward their new sibling?

There was a lot of overwhelming information about spina bifida, yes it was going to change our lives it already had but that was my baby, it didnt matter to me what sex he was, or what he looked like so why should it matter what his body was capable of doing or not doing. I know that some days are going to be challenging for my entire family because of his needs but I also know how much I love him and I was in love with him the moment I found out he was in there. That is why for me I would have never chose to abort. 

Spina Bifida Surgery

Well the surgery is over. Baby boy is still asleep but the surgery was a success. Here is a link to go to that explains kinda what they do during the surgery. http://emedicine.medscape.com/article/2040493-overview if you do not want to go there and want a quick overview...

They take the opening that is on the back. They cut it and push it all back into the back and then cover it with a skin graft. The spine is involved in all of that so sometimes it can be very tricky. Some of the time the spine is not intact. But with our babies it is. They will continue to have to monitor his head for hydrocephalus which is the liquid on the brain that could occur. They should know within the first 2-4 months whether he has that and if he does we will have to get a shunt in his brain to relieve the liquid. When I can get a picture of his repaired back I will post that.

Going into Spina Bifida surgery.

We have had a long morning they were supposed to come get him at 8:30 for surgery and they didn't come till 10:30. The waiting game was hard. He is in surgery for another 3 hours and I will update more. Here are some pictures of his back and what spina bifida looks like before it is fixed. There are also some of his feet because he has club feet. And then some other pictures of him.

This is his back and the spina bifida. They will repair that spot. 

Carter in his little space shuttle transport

This is when they brought him into see Mom for the first time

His poor little club feet. They will have to break and move his feet to straighten them out. They will more then likely do this in a few weeks. 

Moms first touch almost 4 hours after delivering. 

Labor and Delivery with a Spina Bifida child.

What a long day we have had. We got the call to come in at 1 in the morning. By the time we got to the hospital it was 2 in the morning. They were starting my wife and checked her and she was only to a 1 centimeter so we figured it would be a long night. I figured that we would have him around 7 in the morning and he would be here and ready for his surgery. We didn't have the baby till 1:51 P.M. This was probably the hardest thing I have had to go through and I wasn't even the one in labor.

All of our other children have come relatively easy as far as babies are concerned. Our first daughter came after my wifes water broke at work. We rushed her to the hospital at 1 in the afternoon and had her by 8 that night. The second daughter my wife started contracting at 10:00 at night. She woke me up at 3 in the morning and said she was ready to go. We hopped in the car. Got to the hospital and got half way to labor and delivery and her water broke. An hour later the baby was being pushed out. Both of these pregnancies were natural. No epidural, not even much medicine. My wife is a rock star. This was nothing like that.

At 10:30 she finally got to 2 centimeters so that they could break her water. At this point she was in medium pain until about noon. At noon she started having very very bad contractions. They were so bad that she was saying she couldn't do it anymore. I can not stand to see my family in pain. I have to walk out of the room when my daughters get shots or blood drawn because I want to hurt the person that is hurting my children. It is by far the hardest thing in my life to watch my wife go through so much pain and I can not do anything about it. She was in some serious pain this time because nothing had started. She went for about another 45 minutes like that breaking my heart every time. She goes really fast as evidenced by the other children so I was hoping she would go just as fast. At 1 they came in and checked her and said she was a 3. She was distraught she was in to much pain for that. I asked her if she wanted an epidural. My wife is terrified of needles. This plays a big part in why she doesn't get an epidural. She said yes. So at this point I knew she was in some terrible pain. She was almost in tears during every contraction. I was in tears and trying to hold them back so she didn't see. I have never prayed so hard in my life for help for her.

About 1:15 the nurse came in and said are you feeling pressure? She said yes, so they checked her again she had jumped to a 5 in 15 minutes. She said she would page the doctor to get an epidural. She left and about 15 minutes later came in. My wife said there was more pressure so they checked her again and she was a 7. Another 15 minutes another jump of 2 centimeters. They gave here some relaxant in her IV to help her. The doctor that was delivering walked in about 5 minutes later and was introducing her self when my wife said she felt like she needed to push. The doctor checked her and she was there. So they rushed her to the operating room.

So literally 5 pushes the baby was out. I cut the cord and the baby was taken away immediately. Not even shown to my wife. In the operating room they have a window on the wall to pass the baby through. So off he went to get his tests and make sure he was all right because he is high risk. They returned us to our room and told us we could see him when they transferred him over to Primary Children's. We didn't get to see him until 6 when they brought him by the room. It was hard and we kept wondering if they forgot about us or what? So when they finally got there I was able to walk him over and find out when his surgery will be. Stay tuned because his surgery will be tomorrow morning at 9. 

Life without my Wife

I am someone that always wants to be around my family. I want to be around my wife and I would rather have her around then have my alone time. So when I found out that we were going to have to be apart for about 3 weeks while the baby came that was really hard for me. On September 23rd I took my wife up to stay with my mom. She will be there until our baby boy is allowed to come home. As of today, it has been 13 days. I was able to go see her this past weekend but by the time I was able to get away, and the time that I had to go home it was only about 24 hours. This has been very hard for me to do. I miss her and I miss our one year old daughter who is staying with her.

From the beginning it has been somewhat challenging. I knew I was in for a fun time when the very first night I had put chicken in the sink to defrost. When I got home the plug in the sink had come undone so the water had drained and the chicken was still frozen. That is what I had planned so I didn't know what to do. So me and Lyla decided we would go get a $5.00 pizza from Papa Murphy's. Luckily it worked out OK that night but there is only so much pizza you can eat. My wife is an excellent cook and always makes sure we have something for dinner. Needless to say, I have not been as good as she is about it.

One of the first things my wife did was make a list of things that I had to do for Lyla when she got up. I was slightly offended that she didn't think that I could take care of our child. I am her dad I can handle it I said. She told me that she didn't want to come back in three weeks and our daughter had not brushed her teeth for the last three weeks. I laughed it off and said honey I will remember to brush her teeth, I haven't. There are some mornings and I will get to where I am going, either work or school and I will remember that I forgot. I also didn't give her the vitamin that she is supposed to get. I guess my wife did have something to worry about after all.

What is Spina Bifida?

When a baby is developing in the womb very early on the back will not close up like it is supposed to. The bones of the spine do not form properly around parts of the spinal cord. This can be either minor or severe. Sometimes with some babies there is more then one opening. By the point you find out that you are having a baby this defect had all ready formed on your baby. Another part of spina bifida is the fluid buildup in the brain. This is called hydrocephalus. What happens is the brain does not drain the spinal fluid correctly because of the malformation of the spine. Because of this your child will need a shunt to drain the liquid from the brain. It is also referred to as "water on the brain". This can cause seizures, learning problems, or vision problems. Depending on where the lesion is located determines how much control or lack there of in some cases the person has.

Starting from the bottom up I will show a little bit of what each controls. Below the L5 you have the controls of the bowel and bladder. L5 to L1 controls all the way up to the waste. The L3 is where they will be able to, for the most part, walk and be OK walking around. T12 to T7 are the abdominal muscles. T7 to T1 are the chest muscles. So essentially the lower on the spine the better off the person is going to be.

So what does this mean for our baby? We were extremely lucky and blessed with everything that has happened. I can truly say A LOT of prayers have been answered. Thanks to family, friends, and little sisters that prayed for our little guy we have been very fortunate. At first we thought from our initial ultra sound that it was on the L3. So this could have affected how well he walked. But later on when we got some better images they were able to determine that it was on the L5 which is very good. He will have bowel problems the rest of his life and have to use a catheter. But from how severe it could be we can handle that. At this point as well his brain fluid level has been measuring at a normal level. It could still change and it might change but at this point he would not need a shunt. This would lower the chances of him having infections and having to have the shunt changed every few years. The shunt and brain fluid was what the surgery that we could have done had the chance of fixing.

This is something that will affect him for the rest of his life. But I know as a father I need to make it so he doesn't blame everything for this. I am blind in my left eye and they told my parents that there was no way I was going to play sports. That I could possibly have problems walking even. I played sports growing up and was able to do the things that I want to do. Was I limited sometimes and could tell things affected me? Yes, but that didn't stop me from trying and doing my best. I hope that I can pass that on to my son and he can be successful in anything that he wants to do.

Fetal Surgery for Spina Bifida in Utero

The surgery had the possibility of doing so much good. The only thing was they had to do the surgery before 26 weeks so we were on a time crunch. So we thought for sure we were going to do it as long as we could get everything figured out and we qualified. The problems with the surgery were that after my wife would have to be on bed rest. When they do the surgery they have to cut a hole so there is a very real possibility the baby comes early. So that created a whole different dynamic because we have other family members to think about as well. Along with him coming early was the risk of development. Would he stay in long enough to be developed? What if he wasn't? All these things had to be taken into account. After we were told that we qualified as far as my wife's health and the babies health we were excited. But we knew that our insurance had to cover the surgery as well. Our doctor told us that she would put together a presentation and show them why the surgery was necessary. We got approved for the surgery from our insurance. But then came the first problem.

By this point in the process we were all ready at 23 weeks. So we didn't have that much time to get to where we needed to do the surgery and have it done before the 26th week. The surgery was in San Francisco so the insurance had to work out whether California would take our insurance. Well we kept wondering what was going on because it had been a week since our insurance had said they would cover the surgery. We got a call from the hospital in San Francisco that said they were going to take 3-4 weeks to work out the details on if they would cover it. Well we didn't have 3-4 weeks. So we freaked out a little bit. We called the doctors in Salt Lake to find out what we could do. They told us that there was a hospital in Houston that did the surgery. We thought this was awesome because a family member of my wife's lived near Houston. But the Houston hospital told us that my wife would more then likely have to stay in Houston until the baby came! WHAT? How in the world is a mom with two kids and a husband in summer school and fall semester starting supposed to stay 24 hours away from home from July to the middle of October? So we were hoping that she would be healthy and everything was OK so she could just come home after the three weeks.

So we started to try and get everything figured out for us to go to Houston. Our insurance for Houston got approved in two days. We were so happy. We were looking into travel and thought we were going to fly but to rent a car for three weeks was way to expensive. So we decided we were going to drive all the way there. Its a 24 hour drive which is insane. We were trying to figure out what to do with our girls. We knew we couldn't take them because there would be nothing for them to do in Houston. So we were setting up babysitters for all the days we would be gone. We had my mom coming down to stay with them for a period of time. It was pure chaos trying to get it all figured out. In the meantime we had a family reunion going on in Cedar City at our house that we were over with my family. So on top of us worrying about the surgery and leaving our 3 year old and 1 year old for three weeks we were trying to figure out the reunion. Luckily my family is awesome and understood even if sometimes we were a bit frazzled.

Because of the reunion and our last minute decision to drive we were planning on leaving Saturday morning and we had to be there Monday morning at 8:00. So we would drive for 12 hours both days. The night before we were planning on leaving my wife had a full on breakdown. She didn't know how she was going to leave the girls behind. Especially if she had to stay there for 3 1/2 months. She wanted to take the girls with us. I knew there was no way our girls would sit in a car for 12 hours so that would extend the trip. We just didn't have the time to stop and do that. Our housing situations just kept falling through. We had no idea where we were going to stay or what we were going to do. After about an hour of discussing we decided not to go through with it.

This was one of the hardest decisions I have ever had to make. We later found out that most families that have other young kids do not do the surgery because of the strain and the hard things that have to go on after the surgery. This was one of those moments though that people talk about when your a parent. You have to make a decision that affects 5 different people. Maybe the decision isn't going to be equal across the board for every individual. But how do you make that decision? How do you say that this person is more important? When they really are not more important but you still have to make the hard decision. Sometimes in life we have to make those hard decisions. As a parent you have to make them and you and your spouse are the only ones that can make them. No one else knows your family and the best decisions for them. At this point I know that the decision we made to not have the surgery was the right one. And I will not regret the decision we made ever.

Finding out about spina bifida

For my first post I am going to go back and talk a bit about what we have went through since we found out that our son had spina bifida. We found out at our week 18 ultra sound. Usually this time is filled with a lot of joy. I was expecting another girl (we all ready have two). But it was a boy and I was ecstatic. I love my girls and I would have been just fine with another girl but being a guy there is just something about knowing that you are having a boy to pass on your name. So there was a definite joy in the room when they said that we were having a boy. The whole ultra sound took forever. We had a new nurse and everything was just so weird in the room. We later wondered if they saw the spina bifida so were trying to figure out what was going on.

We got the call later that afternoon saying that something was wrong. We knew something was up when our doctor called that quickly. It was on a Thursday and we didn't expect to hear from him till the next week just to say congratulations and everything was not OK. My wife answered the phone and was talking to him and came back in and said that he had a lemon shaped head and that could mean that he had spina bifida. At this moment so many things go through your mind. Who is to blame? Is it me? I am adopted so I have no idea what kind of health issues I could pass on to my children because I don't have that information. The blame can then try to get passed on to your spouse. What did they do? Did they not take their vitamins? Could that have helped? It is a whirlwind of things that go through your mind in a matter of minutes.

We were referred to a doctor in St. George that dealt with problems with pregnancies because he would know more about what was going on and what they could do to help. When we got there we were hoping that the new nurse had just messed up and taken some horrible images and that was the reason why there was a problem. When we got there though that was not the case. We found out he did in fact have spina bifida and then we talked about the options. There was a surgery that could be done while the baby was still in the womb. This would decrease some of the risks that could happen when he came out. We thought that was something we would want to look into and see if it would work. There was a long process though to find out whether we could qualify.

The University of Utah hospital was an in between for patients who went and got the surgery and then had to come back to Utah. There was only a handful of places in the United States that did this surgery because it was relatively new. One of them was San Francisco and we figured that is where we would go if we qualified because it was the closest one. We did all the tests necessary to find out whether we could do the surgery or not and we were eligible. We were so excited. But then came the problems with the surgery.