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.