Getting Back to Normal Life

     Slowly but surely we are getting back into our normal crazy schedule.  With the weather being warm the kids have been enjoying our slip n slide.

    Cole was a pal and hung out while we planted the garden and did some much needed yard work.

 
   We renewed our 72 hour kits. The kids were excited to eat the old kits. They started playing survivor man.

     Sat. Tay had her last dance comp. They did great. I was so glad that I was able to finally see all her dances.

   Cole is fitting into our craziness very nicely. 

   

12 weeks old

     Cole was swollen and sore over the weekend. You could tell that he wasn't feeling very well. On Monday he seemed to start feeling better, but Tuesday morning he woke up boogery.  So Tuesday we just held each other because I wasn't feeling well either.

     We have been working on his exercises that the therapist gave us to do. Cole isn't always happy about doing them but he seems to be getting stronger.

     Tonight Miles' church youth group had a Mom's Night. We painted nails, played games and roasted marshmallows for smores. It was really fun. Mark and Cole had a great night hanging out together too!

Surgery Day!

We started very early this morning.  Cole could not eat after 3:30am. So we had him eat at 3:15am. He normally eats every three hours. I was just praying that he would they sleep until the surgery happened so he wouldn't get so overwhelmed. From not eating. By the time he got done eating and we got him ready it was time to head to the hospital. Cole was an angel. He woke up a little but was not showing signs of wanting to eat. I was so grateful. We checked in and got all set up for the surgery.  The hardest part was sitting in the pre-opt room listening to othet kids cry. "No I don't want to, no, no!" It justbroke my heart. I was grateful in a way that Cole isn't big enough to know anything was going on.
    Mark and I waited in the waiting room for updates.  The first updated said that Cole was doing better now that he is under anesthesia. (Which makes me think that after he left us, he gave them a run for their money. He gets pretty grumpy when he is hungry.) They said they were just finishing the second hernia then they would circumcise him and be done. Yeah for good news!
   Then Dr. Cartwright came in and told us he was done and that everything went very well. He said that he should be a little sore but shouldn't have too much pain. He did say that babies at this age do have a hard time breathing and to not be too worried. That is why  they are having him stay overnight. To keep an eye on him and to make sure he's comfortable.

   Cole has been doing well.  He gave us a little scar right after surgery. We came to see him as he was waking up. I started talking to him and he was so excited to see us, he stopped breathin or held his breathe. All his alarms started going off.  Well that kind of freaked me out and I stopped breathing and held my breathe. I had to sit down for a little bit, so I didn't fall down.  Gratefully he hasn't had anything else like that happen since. The rest of the day we have been working on eating, sleeping and healing. For dinner I was able to go to eat at the Ronald McDonald room. My friend Ariel is here at the hospital with her daughter in the NICU,  she invited me to go with her. We peeked on Cole who was sleeping, then we headed over to see her little girl. She was born about 2 1/2 weeks ago.  And will be here for about 2 months. I know them because they also had Fetal surgery.  I had a great time chatting with her mom and looking at her sweet little body. She is so tiny and precious.

Now Cole and I are getting ready for bed. 

Early Intervention

I forgot to write about early intervention coming last week. They assess Cole to see what his needs are. The gentlemen said that Cole was looking very good. He thought it was a great thing that we had the surgery done. He said a couple weeks ago he was with a child that had the same T11 legion and they had no leg movement. He gave us some different movements to do with Cole legs. Cole likes to turn his head to the right a lot,  so he told us somethings to do to help his head not be flat on the right side. He thought that Cole is suffering from reflex. Sometimes babies will turn my head to the right to relieve the pressure because they are not throwing up their food, they're holding it in. Which could be right because Cole does not throw up but seem uncomfortable. He arches back and turned his head to the right. So we are hoping that after his hernia surgery, his digestive system will work better, if not we will have to talk to his pediatrician about getting some medicine to help. Cole qualified for early intervention and the next day a lady called to set up an appointment for later in the month. It will be nice too be on top of Cole's development and get a little extra help.

2 1/2 months old

     It's been a busy week. Wednesday was picture day for Cole. I tried my best to make sure he would be sleepy for it but he would wake up every time they moved him.  Plus it was little cold.  They had a space heater that helped a bit.

We got Cole's surgery schedule for next week. Excited and nervous about it all. I know he will feel better after the surgery, but I hate the idea of him having to have the surgery in the first place. Because he is so young he will have to spend the night.

    The kids are going off track this next week. It will be nice to have some of my helpers home to help out during the day.

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!