Thursday, July 22, 2010

Hold It Hold It!

The other day my BFF and I met for lunch--Rubio's was all that sounded good to me that day. We were the only gals in there basically and definitely the only one's with kids. Everyone else was the business lunch crowd. So we picked a corner table and huddled 4 highchairs around our table. Next to us was a high top table and about 1/2 way through our lunch a well dressed business man sat at that table. I asked him if he was sure he wanted to sit there and he replied by saying he forgot people were made that small. Well, I think Clara wanted to make an impression on him, she kept turning around and giving him her cheesiest smile. Then she loudly announced "Mommy, I poop!" And I quickly hushed her and told her that she'd have to wait just a minute. She then began encouraging herself very loudly saying, "Hold It! Hold It!"--oh miss Clara. She's so funny

Clara is beginning to declare her own fashion sense. Notice the very dirty white sock. She walked around the house like this for a whole afternoon. Can't wait to see what she comes up with when she's a teenager.
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My God is a Provider


My God is a provider. I have seen that so many times in my life...how I got through college, how I met Owen, so many different ways. But this week, God did some really tangible providing for our family. See those five boxes pictured above? That's about $250.00 worth of the thickening gel that Judah has to have for at least the next 3 months. That's 500 packets--we use at least 12 packets a day so that's about 1000 packets for the next 3 months. There was a mom at church who had a young baby who was on the gels for another medical issue and the only reason I knew this was because I had to prepare his bottle. Well the Sunday after Judah was diagnosed with silent aspiration I saw her and asked her how she got the gels--she went on to explain that since her son was a foster son, they hadn't had to pay for any of it and that she had "a couple" of boxes that she was willing to give me. This was more than a couple. FIVE BOXES. What a blessing!

Another way that God has provided for our family this week is through the meals ministry at our church. I have been so sick with "morning sickness" and have experienced the worst episodes in the late afternoon and evening. Making dinner last week became such a challenge. Throwing up while preparing dinner for my family was more than I could take. So this week every dinner has been provided by someone in our church body. I am still throwing up in the evening, but at least I don't have to make the food. It has been such a blessing--I am sure that Owen is super appreciative of that too!

Finally, Grandma is in town! Thank God! Being so sick has taken such a toll on my ability to take care of Judah & Clara. Joy came into town on Tuesday to help out. This was not a planned trip, but when we said we needed help she willingly came. I was able to sleep a lot yesterday and today I have been able to catch up on cleaning & organizing around the house. Yes I know that Joy really enjoys speding time with the kids--but I will count this too as a way that God has specifically cared for the needs in our family. We are so undeserving of His goodness. How has God been providing for you?
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Wednesday, July 14, 2010

FIVE

The rumors are true. I've been puking my guts up for about 3 weeks. That can only mean one thing.
I am pregnant.
I found out the day before fathers day and made it a sweet little gift for Owen. We had planned to keep this pregnancy a secret until the end of the 1st trimester but I have been so so sick that there's just no hiding it. We are due February 26th-ish and have already decided that we WILL find out the sex of this baby. I am sure our families are so proud. I wanted to have 3 cute stories of how we told all of our families, but I am just too sick to do anything cute, or do anything cute, or be anything cute. Seriously, how can something so small cause such mehem in my stomach? I was pretty sick with Clara, had the regular puking in the trash can at work, I was medium sick with Judah but this is a whole new level. I made the ultrasound tech check twice to make sure there was only one--because I am so sick--there's only one--promise.
We have been trying to get pregnant since January. We have very much wanted this baby, prayed for this baby and cried over the two babies we lost in those six months. But we rejoice in knowing that we serve a soveriegn God who's plan is perfect and let's face it, He's the real maker of babies. He knows when we were really ready for a baby and has already destined our family to be what it is before the beginning of time. There's a lot of peace in knowing that!

What a difference a week makes

WOW! Judah has come such a long way this past week in the eating & gaining department. The change from last Wednesday is dramatic! I started the thickened liquids with Judah on Thursday of last week and was pretty much overwhelmed with the fact that he was never going to learn to take them and we would be in the hospital getting the NG tube. Instead of playin it completely by the rules, my oh so wise husband encouraged me to "taper" him onto the thickner rather than giving it to him full force. Oh how I love my husband for that. I am such a "by the book" person that I wouldn't have thought of that. I aggressively increased how many thickner packets we were giving to him in each bottle and miraculously this kid started eating and eating. He went from 11 oz, to 20 oz, to 28 oz and then yesterday all the way to 30 oz. I cannot believe it! The minimum goal is still 35 oz per day, but he's definitely gaining and definitely more excited about food.
Can you tell? His improved eating has translated also to solid foods at some times of the day. He couldn't get enough of this yogurt the other day. The main difference is not only the in-take amount, but his eagerness to eat & drink. Seriously, each meal has been a battle of sneaking bites in and tempertantrums when he just wont do it--on his part--not mine--promise. But he's eagerly taking his bottle and no longer cries when I approach him with it. He also started to let me hold him for a portion of his bottle which is a major accomplishment, since he's probably long associated me+bottle=discomfort. I am so thrilled.

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Thursday, July 8, 2010

We have a Diagnosis

For several months we have slowly been trying to figure out why Judah has not put on weight. This is not the normal "active infant slow down" or "skinny gene" slow down that we all thought. Judah will gain weight and then loose it. He eats some days and then doesn't eat other days. I have gone from not worried at all, to being concerned, to feeling like this was all in my head to being quite concerned after his 1 year check up.

Finally, as recomended by the GI doctor, we had the swallow study completed yesterday and the results were definite. Judah has silent aspiration. It's basically when thin liquids, and in Judah's case even "thick nectar liquids" penetrate into his larynx and treachea then into his lungs instead of going back to his asphogus and stomach. Of course, most of what he eats and drinks gets to his stomach, but he basically gets liquids down his windpipe every time he drinks. So instead of coughing or chocking like most adults do, he just refuses to eat. We praise God that he has not had the chronic respiratory complications that often go along with this condition. The hope is that this is fixable. The hard part is it's a lot of work and consistency (pun intended). Below is a little diagram so you can see the two "pipes" and where they lead, one to the stomach and one to the lungs.


The first step is to make sure that all of the liquids that go into Judah's mouth are at least the thickness & consistency of thick hot pudding. There's a product called "simply thick honey gels" (that are conveniently not covered by insurance) that we'll add to each bottle--2 gel packs to each 4 oz. of fluid. We're still doing pediasure to help combat his weightloss. This tickening agent even has to be used for the 1/2 tsp. of oral meds I give him 2 x a day. The catch to this is while it thickens the liquids, it increases volume without adding extra calories. So it works to re-teach Judah how to swallow, but it doesn't help in the long run with calorie intake or weight gain. Since we're already struggling with the amount he takes in, I am fearful that we will have to take the next step of an NG tube. To break it down, he needs to have 27 1/2 oz of calorie rich fluids like pediasure a day--with the gel that translates to 41 1/2 oz to get the calories and fluids required. YIKES. Considering that the most he has ever taken is just 24 oz we obviously have an uphill battle. We are working closely with a certified infant dietitionist and nutritionist from PCH and the GI doctor.
We are not loosing hope. We know that we have our friends and family praying for our little dude and we also know that there is a purpose in all of this. The doctors have encouraged me to closely observe Judah over the weekend and if he is not taking at minimum 35 oz of "geled" fluids that he should be brought in for the NG tube. I am not convinced that's where we are at yet and will be very cautious before we take that step. He just looks so so good it's hard to even imagine that there is something like this going on. Please pray for wisdome for Owen and I as we make decisions for him and for wisdom for those who are caring for Judah. But most of all we would pray that God would be glorified through how we handle this bump in our road and that our hearts and minds would be focused more on Christ as we seek wisdom on how to deal with this situation!