Saturday, November 26, 2011

First B-Day + Hospital Stay + Thanksgiving Weekend

Mr. Boy had a cold for 3 weeks and the day before his Birthday, it turned into something nasty. On his Birthday I took him to see his Pediatrician for the cough because Mr. Boy did nothing but cough, writhe, and cry for 2 days. The Pediatrician thought it was a type of pneumonia and sent us home with some meds and a nebulizer machine (a breathing mask that emits a helpful mist) and said if Mr. Boy was in the same condition that evening, to take him to the ER. He didn't improve at all, so we took him to the ER and they admitted him to the children's hospital for "respiratory distress." They think he had a form of Bronchitis that got out of hand and assumed we would be in the hospital for the rest of the week, but thanks to all your prayers, he recovered very quickly and was discharged Wednesday night, just in time to spend Thanksgiving at home. We intended to fly to Denver to spend thanksgiving with David's family, but had to cancel the trip due to Mr. Boy's  illness. It's super sad that we had to miss the trip, but we are so thankful Mr. Boy is better!
PS: If you have a small baby, buy flight insurance! It's good stuff. :)

The Nebulizer

A sock on his hand to keep him from chewing on his IV tape

On a walk

 A new haircut!

Monday, November 21, 2011

Happy Birthday Mr. Boy!

Today Mr. Boy is one year old!!!!! It is crazy, crazy, crazy to think that we've already had Mr. Boy with us for an entire year! Weird. There have been good days and bad days, but somehow we made it through 365 of them. An overwhelming majority of them were filled with frustrations, breakdowns, tears, exhaustion, and utter helplessness and we have to credit the Lord and His amazing mercy for keeping us in one piece. There are a lot of hard things about being Mr. Boy's parents, but ultimately, we are not worthy of the task. The Lord created this precious little being and amazingly allowed us to be his parents. Go figure.

We remember feeling terrified to see our son. We knew so many horrible things about his condition and how his body would be a mess, that we were afraid we would look at him and be more horrified than in love. Would he even live? Would we be able to take care of him if he did survive? Would we be good parents? So many questions and so many fears. As you probably guessed, we did fall in love with Mr. Boy and although we still have fears and worries for our son, we give them to the Lord daily, knowing that He has AMAZING plans for Mr. Boy's life!

He arrived 2.5 months early, 4lbs, with a club foot, spinal defects, with many of his abdoninal organs on the outside of his body... and perfect in every way. A miracle in so many ways.

Mr. Boy's Birthday Party Pictures:
Reason why you were not invited to Mr. Boy's party: :) While planning Mr. Boy's party I got progressively stressed out about the amount of people we should invite and how crowded it would be and how many favors I needed to make and they would have to be super cute, and all the appetizers I'd need to bake, and how Mr. Boy would get anxious if I wasn't by his side the entire time while I'd need to be a host and all I really wanted to do was bake a fun cake cuz I've been watching too many cake shows and yada, yada, yada. Then I realized:
        I wanted a big party just to impress others and fill their expectations.
Mr. Boy's not a huge fan of people.
Amazing small family party!

My 4-tiered cake! 

Birthday Gifts!


Gazing at his birthday cake all lit up


After. He's pretty clean actually...taking after his mother. 

Here is a little recap of Mr. Boy's first few months:

Here is a little comparison of Mr. Boy then and now:

If nothing else, we know his head has grown. :)

Wednesday, November 16, 2011

An Honor

The very night I called my parents to tell them the bad news about my ultrasound, my mom knew she was going to have a rough night of praying and sobbing and prepared herself for a huge cry session. But when she began to pray, she was overwhelmed with peace and joy and spent the whole time rejoicing. The Lord showed her that it was an honor for us to be Mr. Boy's parents and He was blessing us with this baby.  
I have to say, we don't feel this way every single day, but we know it is true regardless. The Lord is our Shepherd and we are in his fold. He allowed this into our lives and has been using it for His glory! I am sure Joseph didn't feel super positive every single day he was held falsely in prison in Egypt for years, but the Lord used that prison stay to lead him to become the second-in-command of all of Egypt and thus save all Egypt and his family from a 7 year famine (Genesis 37-50). God knows what He is doing even when we don't. And that's comforting! 
One year ago this week, I was checked into the hospital with pre-term labor after carrying Mr. Boy for only 6 1/2 months. I told the Lord, "Lord... excuse me, but I think that all these birth defects are enough.... this baby doesn't need prematurity too." It was like one more blow to the gut in a series of horrible events in this pregnancy. I sat in the hospital this week last year, praying that I would still be there with Mr. Boy in my tummy, until February 1, his due date.  But God knew what He was doing and had a different plan. It's good that He answered our prayers for Mr. Boy's protection in His own way, even when it looked like a really bad idea to me. haha. What an honor to be put on this crazy journey as this little boy's mommy!

Mr. Boy thinks it's funny that he arrived early.

Sunday, November 13, 2011


The past few weeks Mr. Boy has gained a little weight despite having a cold for 2 weeks. His vomiting is pretty bad again, so we are thinking about making the tube an NJ again (the tube empties formula to his stomach right now, but we would make it empty into his intestines) so he can't throw up his formula. There is a surgical option, involving putting the tube in his side instead of taped to his face and making a wrap around his esophagus to prevent food from backing up, but the surgeon said My. boy's anatomy is too complicated at this time, and we agree. He just doesn't want to give Mr. Boy any extra surgeries if he can avoid it. The tube in his side would have to be too close to his other medical devices, opening him up to lots of infection possibilities and probably leading to the complete loss of my mind. :) As the Dr put it, "You would be very mad at me if I did this surgery."

So if Mr. Boy still has a tube taped to his face in one year, then they will do the aforementioned procedures when they do Mr. Boy's closure surgery (where they will put some of his organs back inside his body, close his abdominal wall and break both pelvic bones, to bring them together, among other things.) They decided Mr Boy will have this huge surgery next fall. They asked if I wanted it next spring or next fall, and I said there was no way I would let them take a summer from us... if Mr. Boy is going to be in recovery, it will be over the winter when we will be indoors anyway! You gotta think of everything. :) So if all goes well, and Mr. Boy continues to grow then we will have our next surgery in a little less than a year.

I am a planner and realllllly like to have my life planned out to the minute. I thought I wanted to have a date for Mr. Boy's "BIG" surgery because "around age 1 to 3" is just a little too vague, but I have to say that when I heard the Urologist say that we could have the surgery in a year, my heart dropped. I think I preferred the "BIG" surgery to elude my calendar like a strange, far-off, mythical event. I liked it better on the outer edges of my peripheral. But we knew we'd have to face it one day, so now at least we know how to pray more specifically!

Mr. Boy is reading the Bible his own way

watch out, he could be calling you!

Sunday, November 6, 2011

UFOs, AFOs and torture devices

Many times the devices that the doctors expect me to use to "help" Mr. Boy might as well be UFOs because I can't figure them out and can't wrap my mind around how they expect me to implement them. Maybe if I just called up some aliens, they would have a better idea...

They made molds of Mr. Boy's legs/feet to made him these AFOs (Ankle/Foot Orthotics).

They keep his feet from moving up or down and he is supposed to wear them when he is standing up to play. He is also supposed to wear them while in this:

It is a "stander" and it's supposed to get Mr. Boy used to standing and stretch his muscles in the right direction. They want Mr. Boy to play in it about 30 minutes a day.
Play??? I can't get him to stop screaming long enough to breath much less play.

Needless to say, he has not been strapped into this 30 minutes a day... more like 0-2 minutes and maybe one day a week. Oopsy.

Wednesday, November 2, 2011

Speed Bumps

Despite the fact that every time we walk into a room with Mr. Boy, people say, "He's getting so big!" He is not. :( In August he weighed in at 17 lbs, just finally making it onto the chart for weight and Thursday, 3 months later, he weighed in at 16 lbs 10 oz. As our Gastrointestinal Dr put it, babies aren't ever supposed to lose weight. She said that if Mr. Boy continues to lose weight, they will have to put him in the hospital to figure out what's wrong. Well it didn't take a hospital stay to figure out what was up... I figured it out at 10pm saturday night as I read over the fine details of Mr. Boy's formula recipe. In September we switched formulas and they increased his caloric intake. They gave me a new recipe for mixing his formula with water and it didn't specify wether we pack the powder into the measuring cup or just scoop it in. All our other formulas specifically called for "unpacked" measurements. Because Mr. Boy's weight was down on Thursday, they gave me a new recipe for an even higher calorie mixture, and this time it called for "packed" measurements. I realized then that we were supposed to be packing the powder in all along with this new formula and so David and I did a test to see how much of a difference it would make, and it was a whole 1/4 cup difference and when you usually mix in one cup, a 1/4 cup makes a HUGE difference. So we'd basically been starving Mr. Boy.  He wasn't getting enough calories.

At midnight that night, as I was trying to sleep, I realized that this was probably also the reason why Mr. Boy stopped vomiting. I laid there and cried as the realization hit hard. We were watering down his formula, so the vomiting got better and stopped altogether. We decided to not use the new higher calorie recipe and to simply mix Mr. Boy's old recipe the right way for the first time and see how he did the rest of the weekend. The vomiting returned and he showed signs he was suffering from reflux pains several times a day. I talked to the GI Dr Monday morning and she decided that we better go back to watering it down and slowly, slowly add more and more powder over weeks to try and get him up to the proper amount without him vomiting.

We are wishing he never got "better" in the first place. It's much harder to think you see the light at the end of the tunnel and then have that light snuffed out. Back to square one.

Through all this, God is still good. We still have hope and faith in His healing power. And we know God has a special plan for Mr. Boy.


Psalm 33:18-22

18 But the eyes of the LORD are on those who fear him,
   on those whose hope is in his unfailing love,
19 to deliver them from death
   and keep them alive in famine...

20 We wait in hope for the LORD;
   he is our help and our shield.
21 In him our hearts rejoice,
   for we trust in his holy name.
22 May your unfailing love be with us, LORD, 
    even as we put our hope in you.