Home time

Lots of pictures, but I figure they tell the story of how life is going!   Caleb is loving home life.  It's hard to not feel trapped at home, but getting outside to watch the kids play, or to a ball game in fresh air helps.  We  are trying to get used to the g-tube-- daily dressing changes and ventings.  He tolerates the daily bolus feedings and we increased the rate once with no problems.  He gets fussy early evening.  I try to determine whether its gas, needing to be "burped" (which is why we vent his tube), sleepy, or just typical baby fussy. 

We made an outing to the boys' baseball game on Saturday-  got there 30 minutes after the game started, then sat in the car giving meds for the end- but saw great hits and superstar plays while keeping him in his "bubble".

This is Cooper sliding safely into home.

We started oatmeal.  He actually did okay.  We have been trying every day-  hoping he'll like it & just figure out how to swallow and breathe at the same time.

He found his tongue and started making bubbles.  The faces he makes are too cute with his chubby cheeks!

Discharged!

Caleb is home!  I took this picture as I first saw his precious face this morning.  It was a perfect moment.  Tears welped in my eyes as I've never before seen him with no tubes, oxygen, or IV's on his face.  His nurse had him looking so handsome and I was just speechless to see a huge grin when he opened his eyes-- with no scalp iv's or tubes!  I couldn't wait to get this little boy home to his family!  Bo had tried to talk me into going to see him today (although I think he was trying to get out of his flu shots he was getting today!). They were all elated to have their brother home.  I had a lot of "help", although it is so challenging to keep up with all of his meds, feeds, taking care of what comes along with Caleb, and still be Mommy to 4 others that need constant assistance.  We'll adjust and figure it all out, but in the meantime, I'm taking it minutes at a time!   God has blessed is with a glorious weekend with amazing weather for Caleb's homecoming!  We are going to treasure every moment of being together!

Happy Birthday Zack & 5 Month Birthday Caleb!

IYesterday was a great day.  It was Zack's birthday and Caleb turned 5 months old!  Not the ideal way to celebrate either-  after staying up most of the night working, Zack was up and heading out of town for a meeting before most think about waking, then came home to get/ collect the kiddos, care for them, and then continue work late into the night;  Caleb's day spent in the PCICU.  However, to look on the bright side, the best gifts are not tangible, but the gifts of friendship and he definitely has that!   I had multiple people contact me asking how they could help make Zack's day special.  I really didn't know how to reply, I was so amazed.  They recognize how awesome this man is and deserves so much-- even "help" for the day!  

     Caleb had a great 5th month birthday.  He got moved to the floor last night.  Today has been wonderful.  He's been so happy, playing with toys, & cooing.  He tolerated a bottle nipple in his mouth for a bit and actually sucked on it a few times!!!   I was elated and brought to tears!  

    Cooper sent his Vanderbilt hat up for Caleb to borrow yesterday (I think he wanted to cover his IVs.). He was so proud when I showed him a video of Caleb wearing his hat.  He told me that Caleb could just keep it up here until he came home.  What a great big brother!

Super Caleb

Caleb had a great day today.  Weaning down his oxygen.  He's on 1/2 liter currently.  He started his formula (Elecare) through the g-tube at a rate of 7 ml/ hour and have increased it to 14/hour and just increased it again to 21/hour.  He's tolerating it so far.  I practiced picking him up under his arms-  makes me so nervous simply because I just haven't done it because he was on sternal precautions for so long.  He did fine.  We just have to get him used to transitioning and head control. His X-ray looked so much better.  The team decided to hold off on the PICC-- yea!

Bo and Cooper made me a "SuperMommy Cape" and surprised us with a visit!

Weaning off Vapotherm

     Caleb looked so much better today.  He smiled at me!!!  They slowly weaned him off Vapotherm and as of late this afternoon, he's on 3 liters of oxygen via nasal cannula.  He's still on IV lasix and they are consulting picc team tomorrow about whether to put a picc line in.  I pray they don't have to, but understand the importance of having longer term access and the likelihood of his IVs not lasting.         Although I melt over his smiles, I literally collapse over him many times a day in prayer.  This time is so comforting to me.  I feel so blessed when others tell me they are praying for Caleb, sending prayer requests, teaching their children to pray for him, and even dedicating their biggest challenges to him-- praying for baby Caleb when it gets the hardest.  This weekend has been more emotional for me.   When I needed it the most, friends and family sent texts, phone calls, messages, even an Ironman triathlon dedication-- it is always such a God- thing in His perfect timing!  

Day 2 post Surgery

Caleb was a champ through another surgery yesterday.  The anesthesiologist met with us prior to the surgery that morning to tell us that he would not be doing the epidural.  He was concerned that holding the Lovenox shots for his blood clot (which we would've had to do for at least 4 days) would have been dangerous to him.   He said that he thought and thought, and lost sleep the night prior over this case, and just couldn't take such a risk.  The pain from this surgery is high and the concern with not being able to use the epidural to help manage the pain was that he would not take big breaths causing difficulty being extubated.  Prayerfully, he came out of a successful surgery and was off the vent prior to recovery!  The surgeon, Dr. Neblitt, spoke with us and said that he did the Nissen, g- tube, and additionally found that his diaphragm was herniated so he put a few stitches in it.  Caleb has been in the PCICU since.  He came off oxygen, but required it early evening and has been on a liter today.  Pain was being managed via a morphine pump that could be pushed once every 15 minutes, if needed.  He started getting a small amount of Pedialyte through his g- tube, through continuous venting.  He had edema (swelling) on his face and upper chest, which by mid day, was worsening and got quite scary.  He began retracting while breathing, nasal flaring, rib pulling, stomach expanding, dropping satts to low 50's...and this all quickly went from bad to worse.  They gave him extra deuretics and put him on Vapotherm (so his feeds have been stopped).  They stopped the morphine pump and want him to wake a bit more.  Praying for a quick turnaround.

Surgery tomorrow

Caleb is having another surgery tomorrow (Thursday), first case.  He's having a Nissen Fundoplication and a G-tube.  Although I'm so sad he's having to be opened again, I have faith that he will be so much better after healing.  He will be on the ventilator and completely sedated.  Additionaly, an epidural will be used to help with pain management for 2-3 days. He had to have an IV put in today and the best place was in his head.  :(   He also pulled out his NJ tube and "earned" his no- no's on both arms! 

Caleb is one blessed little boy.  He is wrapped in prayer by so many.  We ask for a few extra for the next few days.