Weary

The week after we found out that Mr. Boy would be born with many special medical needs, something switched off inside of our hearts. We lost our spiritual fervor amidst the fear and pain. We didn't become mad at God... we know that God is Good, that He is Love. We know He does miracles and has been producing them in Mr. Boy's life all along. But it suddenly became much easier to live off of the prayers of others and not pray ourselves. We still have had peace and some joy because we feel the weight of all of your prayers for us... and can see that God has been moving and working. But we have had no desire to pray ourselves. No desire to engage in conversation with our Saviour or read his beautiful word. It was and is much, much easier to escape reality with mind-numbing activities like watching TV. It hurts too much to get on our knees and pray for our son. If we pray for him then we are opening ourselves and our hearts up; we are thinking about all his issues, we are thinking about what he is going through and therefore opening ourselves up to more pain. So the emotional walls went up and the numbness set in. When Doctors would take Mr. Boy to poke at him and Mr. Boy would in turn, scream bloody murder, they'd say, "sorry, we know this must break your heart." But I'd always think, "not really... not so sure if my heart is there anymore." The walls were thick. 

With great sorrow, comes the incredible opportunity for peace, joy and growth in the place of intimacy with Christ. But to get there is scary. Emotion is involved, and we have been fleeing anything that will make us face emotion. We've chosen to feel numb instead of anything. If we can escape emotions, maybe we can forget what is going on around us. If we can watch an hour show on TV, maybe we can escape the pain and confusion and fear for that hour. The first month Mr. Boy was home, I just went through the motions of my motherly duties, while soaking my days with Mr. Boy in tv so that I do not get too emotionally attatched. The more I pray for him, the closer I get to him and the more I have to think about what he is going through and will have to go through and then I will have to be more emotionally vested and opened up to be hurt. I will have to hurt when he hurts instead of being able to shut off my heart and look the other way at whatever is captivating on the TV.  It's a very selfish move on my part, but it felt like the only way to survive.

TV is an easy fix and not a lasting one, but its the one we have been continually turning to instead of the lasting peace and joy found in a close relationship with our Heavenly Father. You can only run from the Lord for so long before weariness sets in. We've grown deeply weary and tired of running. We want to embrace our emotions, embrace our loving Father, fully engage in prayer and love for our son, and rest in the Lord's beautiful promises and engulfing love which will surely result. (Of course we've loved Mr Boy all along, but there is a sweeter, selfless love for our son that can only be found in the place of intimacy with the Father, a kind of love only He can instill in us, because it first came from HIM). It feels like we've been sitting in an immense heat, shriveling up, while all along there has been this deep, refreshing river right in front of us, waiting for us to jump in. We are just beginning to wet our toes.

Matthew 11:28-29 

   ²⁸ “Come to me, all you who are weary and burdened, and I will give you rest.²⁹ Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 

Test Results

The doctor called back today and let us know that the test didn't show anything wrong, so we are still in the dark as to why Mr. Boy keeps vomiting so many times a day.  Its pretty frustrating, especially since each time we've given him tiny tastes of food he has gagged and vomited then as well (Normally its just random).

But here is a cute video to liven your spirits. :)

Entertainer

Another Test

Welp, we tried a few things now to see why Mr. Boy keeps vomiting. We've tried new formulas, increasing our reflux medicine Prevacid, tried Regalin which empties the stomach more quickly, gas medicine, allergy medicine, keeping Mr. Boy propped up, having him sleep on a wedge, x-rays and ultrasounds to check for blockages in the stomach or intestines, 24-hour swallow studies, live x-ray swallow studies, blood labs... and I'm probably leaving something out. After one of the x-rays back in April, they saw that Mr. Boy's intestines is twisted and decided that was obviously causing the vomiting and reflux and screaming, and he'd be taken into emergency surgery and I was thrilled. It sounds horrible but I almost cried tears of joy thinking that this problem would finally be solved and Mr. Boy would eat normally and even take my milk! But only moments later they realized most babies with an Omphalocele have twisted intestines and its no big deal and was not the reason for the vomiting. Then I actually cried tears of sadness. It's hard to not know how to fix the problem that is causing your family so much frustration, and your baby so much pain.

Monday we are going to try something else. Its another type of swallow study where they have Mr. Boy drink colored fluid and watch it flow through his system with an x-ray to determine if this is an esophagus problem or perhaps if it really is a blockage in the intestines, perhaps from scar tissue from surgery. If this doesn't discover the issue we will try switching formulas one more time and then we may be out of options. The doctors keep thinking Mr. Boy will just grow out of it, but I've talked to a few parents of kids with the same condition Mr. Boy has and several of them vomited for years. I don't want to accept that he will eventually grow out of it, if we are talking about years. There has to be a reason for all this and until we get a logical answer, we will keep asking the Doctors and searching google. :) Please pray that we will figure this out soon. I am afraid it will keep him from being able to eat solid foods well and then we'll have a host of new problems. Thank you for your prayers! Whatever happens, the Lord has been so good to us, providing financially every step of the way and obviously providing strength to move every step we take because we couldn't be doing any of this with out HIM.

First tastes of real food

We got the "ok" from the drs. to start feeding Mr. Boy baby food for fun. The following is the shenanigans that ensued from following the Dr's suggestion for how to begin:

"Are you sure this is ok?"

Peas aren't all that bad

He actually stayed quite clean. He got my neat genes. :) Either that or he was more interested in the chinese food we were eating than his peas.

What Happened?

We were on a walk the other day when a cute little girl the age of 6 came up to the stroller and peeped in. At the sight of Mr. Boy's feeding tube, she quickly exclaimed, "What happened??" HeeHee. We tried to explain that Mr. Boy doesn't eat very well, so we just send the food on down to his body for him through the tube. She was so impressed. :)

Captivated by the beauty of nature. :)

My sad attempt at being artsy.

Renewed Hope

At our latest GI visit we found that Mr. Boy is now 15 lbs and in the 25th percentile for his weight if we go by his due date (not birthdate). They are very pleased with his growth. However, one thing we have not spoken of much has been the fact that Mr. Boy still vomits about 5-8 times a day... for the past 3 months straight. I shouldn't say vomit, because no food comes up since there is no food in his tummy ever (since it goes through the tube straight to his intestines) but after fits of screaming, gaging, wretching, and heaving either nothing comes up or lots of mucus projects out. Its not very pleasant for anyone. :( Mr. Boy has been doing this for a long time and it seems like a weird thing for a parent not to insist upon fixing sooner when their child has been vomiting 8 times a day for 3 months, but it never seemed that bad until now. It just blended into the background of a host of difficult things that were going on with our son and quite honestly it seemed minor in comparison to other things. Mr. Boy screamed and cried all the waking moments of his life, so wether he was gaging or just screaming, it was all horrrible and the gaging just seemed to "fit in" with it all. So every time in the blog that we mentioned that Mr. Boy had a really good week, it was all relative because this was always still going on in the background. This past week he has been a wonderfully happy, silly, adorable little boy every waking moment except the moments during or building up to vomiting, which adds up to about half of every day.  So now we can see a sharp difference between our happy boy and this incessant sickness of some sort. We've mentioned it to the doctors every single visit for these 3 months, but they keep ignoring it hoping it will go away, as do we. But we are now seeing this as the major thing keeping Mr. Boy from full happiness and growth during these infant days. He will be late developing physically in most areas because of his body structure, but we don't want him held back anymore from developing by the fact that he spends half the day fussy. He can't get better at head control or work on sitting up if he keeps needing to cry and be snuggled due to pain. So now we are on a diligent quest to find the root cause of this. We have the pediatrician and GI specialist on the case and are going to try several different methods to make this go away. They've finally agreed to do something. We'll keep you posted if something works!

Hard at work

All moved in

Last weekend we had an army of family and friends help us paint and move into our first home! We couldn't be more blessed to be surrounded my so many loving people and in such a wonderful home. My parents came from their home in Florida and stayed all week helping us move in and get settled by watching Mr. Boy,  cleaning, hauling, painting and by hanging pictures on the walls like seasoned decorating pros. It was sad to see them leave this morning. In one week every box has been unpacked and every room painted and decorated.  It was a whirlwind miracle.
Mr. Boy has grown leaps and bounds. Every day he does something new and adorable and we realize just how far he's come. He has yet to be able to hold his head for long periods, sit up, roll onto his side or tummy or eat anything orally, but we know he will get there eventually... even though it will take much longer than most. When you have a premature baby, you don't measure milestones based on their birthdate, but on their proposed due date. When Mr Boy was born 2.5 months early, he behaved like he was still in the womb and still needed to develop as such. It wasn't till 2.5 months later that he could function like a newborn baby. So we went through almost six months worth of the usual "first tough 3 months" of a baby's life before you start being "rewarded" so to speak, with smiles and coos and playfulness. Watching him actually play is such a new thing for us and a huge source of joy.