Recovery

The past few days have been some of the hardest since Mr. Boy has been born. It's so hard to watch him on the breathing tube and in so much discomfort. They are still weaning him off the sedatives and think maybe tomorrow they will take him off the breathing tube, but it's hard for him to breathe because his abdomen is completely stuffed full with organs which weren't located there before, and all the swelling is pushing up on his diaphragm. Plus it probably hurts to breath. The breathing tube is good because the machine can breathe for him, but then fluid builds up in his lungs that he'd normally cough out, but can not, so they have to suction out his lungs and tummy quite often which he does not enjoy either. He also gained a pound during the surgery just from all the fluids they pumped into him, so he's quite a puffy, swollen little man. Hopefully we'll be able to hold him again in a week or so, but they don't want any pressure on his abdomen for fear the stitches will rip open since they are sewn in very weak tissue. Everything should be fine, but we can't be too careful.

Yesterday while they were changing his head positioning, the breathing tube became obstructed and had to be pulled out of his throat.  The nurses hit the panic button and in 2 seconds the room was filled with nurses and Drs pumping air into his lungs and trying to shove a new tube down his throat. It was all so traumatizing and I while I knew Mr. Boy asn't going to die, it was terrible thinking how much pain he must be in. Its hard when all you can do it sit there and hold his hand. Please pray that he heals quickly and with as little pain as possible. We just want to get through this week!

holding mommy's hand

Eyes finally pop open

Swollen little boy!

First Surgery Update

Mr. Boy underwent his first surgery today.  He could not eat for 13 hours before the surgery, so Kassy stayed the night with him to try and console him.  But the Lord was helping because Mr. Boy was calm all night and morning which is not normal when he doesn't get to eat!  The surgery took just under 5 hours and Mr. Boy seems to be doing very well.  He has a machine breathing for him and he is pretty sedated to control his pain levels.  They plan to control his breathing for a couple more days as he recovers from all the strain on his little body.  Mr. Boy is a fighter and is doing really well.  He has incredible Surgeons, doctors, and nurses that are taking such good care of him.  Thank you all for praying, it is greatly felt here and greatly appreciated.  The peace of God surrounds us.

taking advantage of his sedation to clip his nails

back in the isolette while on the respirator

New Gear

Mr. Boy got his final cast off of his club foot Thursday and received his new special shoes Friday. He will wear them 24/7 for 3 months and then nightly for approx. 3 years. He looks like a snow boarder:

Original Club foot  

After the 5th cast

Mr. Boy got a new chair which vibrates and plays music which he loves. The nurses tried a blue, more upright one which turned out to be unsatisfactory, so they tried a pink one and he loved it. Please don't tell him its girly. :)

Receive

Why is it so hard to receive things from others?  Kassy and I have realized that one of the toughest things for us during this time, is to receive gifts from others.  We have been so taken care of, so loved, so blessed and so encouraged by all the love, support and gifts from others.  We feel so undeserving and have been so humbled by the graciousness of many.

A friend of mine from highschool who found our blog through facebook contacted me a few days before Christmas asking if we could be their "Adopted Christmas Family."  They wanted to send us gifts that we needed/wanted to bless us this Christmas. At first I wanted to say no...there are so many more deserving families than us. But as Kassy and I spent time praying about it, we realized, our pride was getting in the way of what the Lord was trying to show us.  We are his Children and He loves to lavish good gifts on all of his children.  So the gifts kept rolling in from them: many items off our registry, plus a fancy dinner gift card, and a couple's massage! This morning we got to partake in the extrememly thoughtful couple's massage and it was more of a blessing than we even expected! There was stress we didnt even know about till they massaged it away! :) We have been overwhelmed by their generosity and felt the Lord's love and provision through them in a real way.

Here is another exapmle of a gift that was difficult for us to recived, yet it was one of the most self-less gifts we've been given. We hope to show it to Mr. Boy one day and empower him to be like these:

These are only two examples of the amazing things people have done for us: the prayers, the gift cards, the meals, the texts and emails of concern, have all touched us deeply and we thank you all for generous, thoughtfulness. We feel so blessed. 

PS: Kassy still has a bit of a cold but has been back visiting Mr. Boy since Thursday night and wearing a mask. 

Sick

I (mom) have a little cold today which means I cant go see Mr. Boy!  I have been loading up on the Vitamin C and will take advantage of this time to rest, but its hard not to see my baby.  I can wear a mask while I'm there to protect him, but while in the beginning, most contageous stages of this cold, I need to stay away. :( Please pray that I get better soon and don't infect Mr. Boy.  David will be going to see him tonight alone so hopefully they can get in some serious male bonding time. :)

The "Little" Things

Although Mr. Boy's main issues are under control for the moment, it's the "little" things that drain us.  It's funny that your child can have intense issues with many organs, but that doesn't bother you nearly as bad as the diaper rash.  Mr. Boy doesn't mind the displaced organs right now, he minds his tender bottom.  It's ok when he cries because he's a baby, but it hurts when he cries because he's uncomfortable and this week his crying reached a new decibel level.  The worst thing has been that we had to limit his eating.  I can only breast feed once a day now since he was scarfing down too much milk and they cut him back on his bottle feeding and just increased the nutrition he gets from the IV because his intestines isn't absorbing the nutrition from the milk (and the more milk he gets, the faster it flushes through his system without getting absorbed).  So every time we feed him and he gets to the end of the bottle, he sits there wondering where the rest of it is, gnawing on his hands and screaming like we are the meanest people in the world because he feels like he's starving. :(  He gets so upset that he grabs at his face and scratches himself.  He has 4 scratches on his face today! Plus, the newest cast on his leg looks painful.  This all keeps him from sleeping and sleep is so vital right now to his development. It is so hard to watch him suffer. So although the big issues are doing well, the little things wore us down this week.

He got another blood transfusion yesterday so that seemed to brighten his spirits, along with his color! :) So we think next week will be a better week. One of our nurses thought up a great way to keep his bottom dry. Thank goodness for innovative nurses! 

Safe in daddy's hands

Scratches on his face and mittens to keep it from happening again.

Progress

Goodbye Isolette!

~Mr. Boy's NG tube (tube going from the nose to his stomach for feedings) fell out again but they did not put it back because he can take all his milk through the mouth!
 
~Moved to a crib from the Isolette. Our baby boy is growing up so fast!

~Umbilical cord finally fell off! whew!

~He can now have music playing in the room, so we bought a Lullaby Hymns CD and a Lullaby Piano Classics CD so we can get him off on the right foot.

Turning the wrong way

~Therapists come once a day to stretch out his neck because he only likes to turn his head to the right so he's forming a nice lil flat spot on that side of his head. This is called Torticollis, where the muscles on one side of the head are weaker. (He likes the right because thats where his stitches are, from when they cut into his neck to insert the Broviac IV under the skin.) They taught us how to stretch it as well, and how to hold him in order to work out that neck!

Stretching the head

~Mr. Boy's poor bottom is almost bleeding due to sever diaper rash, but the nurses are working hard to remedy the problem. Surgeries will eventually correct some of the problems causing this, but right now it makes for a sad bottom.