Baby Calvin Update

Here is Cami's latest update-

Calvin update! Thank you all soooo much for your thoughts and prayers! We have seen so many answered prayers and felt so much love!

Calvin seems to be pretty much done withdrawing from the sedatives! It was heartbreaking to see him go through it again, but this time was much better. He didn't have his breathing tube, so we could hold him whenever we wanted, and when he cried we could hear him, and with each cry his lungs for clearer and stronger! So we just rocked him and felt so blessed as he cried and cried.

Each day we slowly weaned him from the high flow oxygen and yesterday we turned it off completely! He has gone 24 hours without any assistance with his breathing! He did desat a few times over night, but recovered quickly with no intervention.

Now he just has to keep doing great, and remember how to eat! He has actually lost weight since we got here almost 3 weeks ago. He was almost 7 lbs and is now a little over 6.5 lbs. He failed a few swallow studies, but seems to be improving. He just likes taking his time.  We are doing exactly what we did in the NICU 2 months ago- feeding and growing 

But we can be patient- we have learned how to do that! We are just so happy Calvin decided to stick around and feel so blessed and so grateful for every second we have with him!

— with Nathan Joseph B

Spina Bifida Clinic

   On Friday we got a call early in the morning that they had room for us to come to the Spina Bifida Clinic. Our appointment wasn't until May 9th, so it was nice to get in earlier. At the Clinic you are able to see a lot of Drs. in a short time. It's like them coming to you, instead of you going to all of their different offices. We only saw 4 out of the 10 Drs. We really wanted to see the Neurosurgeons and the Urologist. But we were able to see the Physical Therapist and the Nutritionist also. The Neurosurgeons said that Cole's head and back were looking great. They poked at his feet and they responded, they felt that was wonderful. They want to see us back in 3 months, unless we feel there is a reason to be seen. The Urologist talked to us about Cole's bladder/ bowels. Everything is looking good so far. They will do a bladder pressure test on him when he is about 14 weeks old, to see how his bladder is really working. Cathing him so far everything seems as if he is able to empty his bladder fine. The day we left the hospital the Dr. found that he has a hernia. The Urologist is the on that would fix that. He would like to do the surgery in the next week or so, before it become a problem. The Physical Therapist said that Cole's legs looked promising. His left leg is weaker than is right. But all the muscle seem to be moving.  He said that he doesn't like to do braces or anything to assist until they are 2-3 yrs old. He thinks they need sometime to try and build as much muscle as they can before we step into help. The Nutritionist said that it is great that Cole is breastfeeding and to keep it up!

Update on Baby Calvin

Here is an update from my friend Cami about her son Calvin. Thank you to those that have been praying with us for this sweet family. 

18 anxiety attacks and 25 stomach ulcers later....

What a roller coaster weekend! Calvin got his blood transfusion Saturday evening, thankfully that went flawlessly! He pinked right up . He was doing really well with all his cpap trials Saturday night and Sunday morning, so the plan was to extubate him around 2 pm on Sunday. A little before 1 pm, Calvin let us know he was NOT ready to be extubated yet by not breathing on his own at ALL for about 2 hours, and KIND of breathingon his own for another several hours after that. Overnight he had a few de-sats - but nothing crazy - and he did pretty well during one more trial. His chest x-ray this morning looked good (it has been not so great for the last couple days) and he was really awake, so at 1:30 pm the Dr. said now or never, and pulled his tube.

So far he's been doing well. No major de-sats and no periods where he's forgotten to breathe. He is on a high flow nasal cannula, which means there is basically a windstorm going into his nose reminding him to breathe. Over the next few days we will work on weaning him off of that.

We are not out of the woods yet, but heading in the right direction!!! We are so proud of our little man!!!

Cole's Back

      One of my Spina Bifida friends posted this chart of what part of your spinal controls what part of your body.  I thought it would be a good time to explain why we feel that Cole situation is so special. Cole's legion is T10, which means everything below T10 when he was born without the fetal surgery, would most likely be damaged and not work. With the surgery that we had done, we were told that it would likely lower the damage to L1. Which we were very excited about and felt the surgery was well worth it. So far Cole has show great movement in his lower body. When people ask us if the surgery worked, it's a tricky answer. Yes it closed his back. Yes he has movement that we were not planning on, but hoped for. Yes his ventrals have not grown, so he has not needed a shunt. It will take time to know how well his body really works, but our family feels we have been blessed. The surgery couldn't have gone better in our eyes. We feel blessed that we qualified for it. The Lord has truly been with us this whole time. 

    Here is the chart and a picture of Cole's back. 

2 Month Check Up

    We went in for Cole's 2 month check up today. He has gained weight since last week. He weighs 7 lbs 10 oz. His head is measuring well. He was a tough little cookie when he got his shots. The nurse said he was the first baby that didn't cry for her. Not sure if that means he is just use to being poked or he doesn't have much feeling. The nurses in the NICU would always comment on how calm he would be as they would work on him.
     We are now just waiting to meet with the Spina Bifida Drs and get an echo in the next couple of weeks. Our Pediatrician thought he was looking great.
   

Tay and Cole love hanging out, even when they are sleeping! 

Enjoying Cole

    The kids love to do anything to help with Cole. Taylor is always willing to change his clothes, hold him or really anything I ask her to help with. She sure loves that kid. I was talking to the kids about what they love about Cole. Drew said that he loved his little hands and feet. Luke said he loved holding him. It's so fun to see how mothering Tay is and how tender the boys can be.
     The kids enjoyed helping give Cole a bath. Everyone got a turn cleaning an arm or a leg. Now not only does he make squeaky noises, he is squeaky clean!

First Day Home

    Bright and early we had an appointment with Cole's new Pediatrician. Dr. Gottleib was referred to us after the Dr. that Dr. Bloom referred didn't work out because she didn't take our insurance. He seemed very nice and I think it will be a great fit. Cole is going to need to have a couple appointments with the Spina bifida clinic, an urologist and have an Echo done. So we will be busy the next couple weeks. He also has an appointment with Early Intervention, to evaluate him.

Cole was a very good boy at his Dr's appointment.

Weighing 7lbs 2oz  and 19 inches long.

Mark was a pro as he feed Cole his vitamins for the first time. The house has been magical having Cole here. Everyone is so excited that he is finally home.

It's Great to Be Home!!

Its been crazy but it's been great! The BIG kids are in heaven and Cole in handling the attention well.

He is Home!

  Sunday night they were talking about Cole going home maybe on Tuesday or Wednesday.  Someone had even mentioned that it could happen on Monday. So we went home and got a couple things ready just in case and put them in the car. Monday morning when I came in they said Cole was looking very good and they possible could be sending him home today. At rounds they decided he could go home. So at around 7:30 p.m. Cole was discharged and we headed home. It was so great.

Look at Cole!

    I came in tonight and Cole looked different to me. It took me a minute but then I saw it...

   

       There are no tubes on on his face! He is still hooked up to the monitors but that is all.  They put him on the 4 hour eating schedule, where he gets to say when and how much he eats. He pasted his first 12 hour test. So he was able to get his feeding tube out. This is very exciting news. It means that if he keeps it up he could be home next week! The kids were so excited when we told them. They were calling dibs on who gets to sit by him first in the car and who gets to hold him first. It will be so nice when we are all together.  Let's pray that everything will keep going at planned.

Keep Truck'n

   Cole has been doing really good. Thank you for all the prayers. He was able to eat 4 feedings in a row. On the fifth one he was in a deep sleep and didn't care about food. But woke up for the next feeding and ate really well. When Mark and I came in tonight Cole had been really to eat for about 20 minutes. We are getting closer.  It so exciting to think we could be home soon.

     On my way to the hospital I have been listining to talks on tape. I don't know if you have heard of Hank Smith,  but our family loves him.  He has such great messages and he is so funny and fun to listen to. I love that my kids love going to sleep listening to his talks. Here is a little clip that I found online. Hope you enjoy it as much as I have.
https://m.soundcloud.com/user7604312/hank-smith-5-temptation

7 weeks old/ 50 days old

    Tuesday turned out to be a pretty good day. Cole ate well and while I was home having dinner,  he had a bottle. I was kind of afraid that he wouldn't eat for me at the 8:30 feeding but he did. So the nurse asked about feeding him a bottle at his night cares if he woke up for them. Wednesday morning I called to see how it went, and they said that they had put him on a 4 hour feeding plan. This is where he is in charge. He can wake up when he wants to eat, but it has to be before 4 hours. He had been doing great. When I came into feed him he ate really well in the morning. At rounds they were even talking about discharge for this weekend, early next week. It was kind of exciting.
        Then in the afternoon he got really sleepy and wouldn't wake up to eat. They let him sleep for a while and then tried a bottle, but during the bottle he had a huge A & B. (where his breathing and heart beat go down for a while) He was very pale and coma like afterwards. They told me that he would most likely need sometime to recover from it and not to be surprised if he sleeps through the next couple of feedings. It was a scary experience. I was pretty shaken up the rest of the day.
    Today it seems like he was back to his old schedule. He ate well at the 8:30am feeding and then slept through the 11:30am feeding. Then he ate his 2:30pm feeding. Hopefully he can add one more feeding in at a time. I think we will have better success if he does it slowly.

   I found out that one of my friends that had fetal surgery is on hospital bed rest that the hospital. So I was able to visit her this afternoon. Her water has broke and they are hoping to keep her pregnant for a bit longer. She is almost 30 weeks. I took her on a tour of the NICU. We have another friend that just posted today that her little guy isn't doing very well. He was home from NICU  for about a week then started showing signs of needing a shunt. They had the surgery last week and have been home for just a couple day. Since the surgery he hadn't been acting normal. Crying a lot, breathing different. The moring of his first appointment to check on his shunt, he stopped breathing. She calling 911 and he was rushed to the hospital. He is on a breathing tube and they are still trying to find out what is wrong. Our hearts goes out to these two families.

Two steps forward one step back

   Today was a hard day. Cole didn't not eat good at all. The 8:30am feeding he at 10 mil. At the 2:30pm feeding he at 30 mil. He was so sleepy. He just wouldn't wake up. I went home around 4pm feeling very down. The highlight of my day that kept me going was at lunch right before I left I met Nola and her son John. They weremthere for an appointment. John was in a terrible motorcycle 3 years ago. John is in a wheelchair, but was very quick to show me that he can stand.  He has been working very hard to get to where is today. At the time of the accident he was in a coma for 3 months. He is a true miracle.  What a neat person. He was so great to talk to. I personally know how hard it is to learn how to walk and talk because of Mark and all that he has gone through. John was such a tease and had such a great attitude about things. His Mom was amazing too. You could see that she was very selfless and would do anything for her son. I truly was blessed by meeting these two. It really help left my spirits.

     At night I went to the hospital alone because Mark was running kids around. I was discouraged because I had trying for 45 minutes to feed him and he was so sleepy.  I was starting to think that something was wrong. When I told my nurse of my concerns she told me that she forgot to ell me that he was feed a bottle at 5:30pm.  That made me feel a lot better. He was just tired from that feeding. She asked me if I'd be okay if she fed him a bottle at the night cares if he woke up. I said that would be fine. So we'll see if he wakes up for them.

What a Wonderful Weekend

     Cole has been doing really well with eating. He ate full feedings for the last 2 days. Everything else is looking good.  Moving his legs, sleeping, eating and pooping. He is weighing in at 6lbs 8oz. Hoping that he starts waking up for his other feedings.

  Conference weekend has been nice to help the time go by. I really enjoyed Pres. Uchtdorf's talk. He talked about counting your blessing. I thought it would be a good time for us to count the many blessing we have been blessed with. It is a great reminder that the Lord is always near.

https://www.lds.org/general-conference/2014/04/grateful-in-any-circumstances?lang=eng&media=video#watch=video

This part of the talk stood out to me-

"Being grateful in our circumstances is an act of faith in God. It requires that we trust God and hope for things we may not see but which are true. By being grateful, we follow the example of our beloved Savior, who said, “Not my will, but thine, be done.”

True gratitude is an expression of hope and testimony. It comes from acknowledging that we do not always understand the trials of life but trusting that one day we will.

In any circumstance, our sense of gratitude is nourished by the many and sacred truths we do know: that our Father has given His children the great plan of happiness; that through the Atonement of His Son, Jesus Christ, we can live forever with our loved ones; that in the end, we will have glorious, perfect, and immortal bodies, unburdened by sickness or disability; and that our tears of sadness and loss will be replaced with an abundance of happiness and joy, “good measure, pressed down, and shaken together, and running over.”

We are feeling blessed!

   Cole has been doing well the last couple days. He has been taking from a bottle in the middle of the night. I have still been going up in the day and evening to nurse. Today we took him off of the head box to see if we could get him to wake up more often. Nothing so far.
     We have been truly blessed by one of the doctors at the hospital. We don't have a pediatrician for Cole. The other kids go to our family doctor, but Cole will need a pediatrician who will help us with his Spina Bifida. This Dr. has gone above and beyond to help us get an amazing pediatrician.  It's amazing how the Lord blesses you through other people. We are so grateful!

6 Weeks Old

   Cole is now 6 weeks old. Not only is he getting bigger, I'm getting better. I had my 6 week check up and everything is looking good so I was told that I could start driving again. 3 months is a long time to not be able to drive. I was a little scared at first, that maybe I would have forgotten or something. But it's like a riding a bike, you never forget.
       Because of my appointment I wasn't able to be at the hospital for Cole's afternoon feeding. Because I was going to be home more today then normal. I told Drew that we could make cookies. The kids had a great time and it was fun to do something special with the big kids.

    The kids all made new pictures to decorate Cole's bed.

My friend Annie Miller came to visit us last week and took some pictures of Cole and his hospital experience. They turned out amazing. We are so grateful to her for share with us her wonderful talent.

http://photosbyanniemiller.com/welcome-baby-c-to-the-world-2/