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.