Tuesday, May 22, 2007

May 22, 2007




"Then they would put their trust in God and would not forget his deeds but would keep his commands." Psalm 78:7

Unfortunately, things did not go to well with the speech therapist yesterday. With-in the first minute of the meeting the therapist decided Kyle was not ready to try a bottle. Needless to say, I was very disappointed. Kyle was sound asleep and the therapist picked him up and gave him a pacifier. When she did this, his oxygen level dropped a little (from 95 to 89, still well with-in the normal range). As soon as this happened, she said he was not ready because he could not maintain his breathing while sucking on a pacifier. I pointed out to her that his oxygen usually fluctuates some when he is first picked up, but she said that him not liking to be touched is another indication that he is not ready for the bottle. I tried explaining that Kyle loves to be held - he has since we were first allowed to pick him up, and that he does fine on a pacifier, but her mind was already made up.

The speech therapist came back today and before her 11:00am appointment with Kyle, I woke him up, changed his diaper and was holding him when she arrived. I figured that if I was sound asleep and a stranger came and picked me up and stuck a pacifier in my mouth, it would take me a minute to figure out what was going on as well! Anyways, it seemed to help some, as she said Kyle did much better today. He did not have any problems maintaining his oxygen levels and sucked just fine on his pacifier. Because he was doing better, she dipped his pacifier in milk and observed his reaction. She said he did everything right, so her plan is to try dipping his pacifier in milk for a few more days and see how he handles it. She couldn't give me an exact time as to when she thought he might be ready for a bottle, but said it would most likely be in a couple weeks. I asked what the worst case scenario is if we try giving him a bottle now and if he doesn't handle it well, we stop...she said that this may give him a negative impression of a bottle and lead him to never want to take one.

I am trying to remain positive, we have had so many blessings, but it is frustrating sometimes. It is hard when the nurses and I have been around Kyle all day for the last few months and we think he is ready, then a speech therapist comes in and after 5 minutes makes a determination that will prolong our stay in Florida by at least a couple weeks. My due date is June 7 and that was always the date we were told to strive for him coming home. As it stands now, he most likely will not have even had his first bottle by then. Once he does take his first bottle, it is a very slow process until they work up to all bottle feeds. First they start with one bottle a day, and after a few days they'll increase to two bottles a day and so on until he is taking 8 full bottles a day. Sorry for venting, I just miss being home so much and was a little caught off guard by this set back.

"Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For after all these things the Gentiles seek. For your heavenly Father knows that you need all these things. But seek first the kingdom of God and His righteousness, and all these things shall be added to you. Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble." (Matthew 6:31-34)

Although there is no shortage of things to worry about, Jesus's message offers a new perspective. He reminds me that our heavenly Father knows my needs (much better than I do, by the way), and He will give me what I need from day to day. Sorry again for venting, I just need to remind myself to seek God's kingdom first and make it my central focus, and all of these other things will fall into proper perspective.

Much Love,

Jennifer, Joe, Madison and Kyle

5 comments:

Anonymous said...

Jennifier so sorry for all the problems you are having. I know people can get to you by the things and way they do certain things, if they were in your shoes it would be all together a different story.I sure hope Kyle can start taking a bottle and so you all can get back home soon, I know how it must feel to be so far away from your family, I was there one time when my daughter had leukemia and we was at St. Jude's hospital for 3 months and had to leave 3 of the kids home and it about killed me, so know a little of what your going thru and its not easy. Kyle seems to be doing good looks like to me and he looks so cute in his blue suit. Will just have to start praying harder I guess till you all are home and he is doing better. I will be praying for you as well as Kyle as I know what your going thru. Just take care of yourself and it will all work out in the end. God has a plan and it will work out in His time not ours. I love you and wish there was something I could do or say to make you feel better.

Love & lots of prayers, Aunt Sandra

Anonymous said...

Jennifer, It is understandable this would seem like a significant setback. Yet, if you were on the outside looking in you might come to the conclusion sooner that you would rather be conservative as you move forward.....not take unnecessary risks. And, it is natural you would be tired of the strain of living alone with Kyle through so much of this ordeal as well as having to be away from your home and separated from your husband and daughter. But, the reward is you will have a healthy son when you do return!
Keep on keeping on, Jenn. You have done remarkably well to date. And, when you need to vent express it. Holding it in does not help. We are here to support you with prayers as well as listening ears, broad shoulders, and compassionate hearts. Laura

Anonymous said...

Dear Jennifer,
You are allowed to be frustrated about being away from home for so long and how things are handled regarding Kyle. You have been so strong and deserve a chance to vent your feelings.
Have faith in what the therapists say. It is very important to move slowly regarding feeding to avoid so many potential problems even though you feel Kyle is ready. He will catch on quickly enough and you will be home soon. Stay strong and know that so many people are praying for you and offer support to you through this difficult time.
Love,
Aunt Kathie

Anonymous said...

Jennifer,

So the little guy truly has Daddy's blood in him ... stubborn from the beginning! Have faith that Kyle will take the bottle when he is physically ready. Remember that he would have still been in your womb at this time and not yet suckling. So give it a few more weeks and you'll both be home thrown into the craziness of home living. *(Hmmm, maybe Florida isn't all that bad after all?!?!?)

Love,
PattieCakes

PS. Madison will be spending Sat & Sun with Papa Bill, Jesse and me.

Anonymous said...

Hang in there Jenn, you have all come so far. Kyle is beautiful and hopefully he will take those bottles like a champ. This is such a long and tedious process, who could have ever imagined. I am sure that you feel so torn and while Madison misses you as much as you miss her, she is so strong. You have every right to express your feelings, don't feel bad, you have been through more than most. We will keep praying for a quick return and for a quiet summer at home. Saw Uncle Bob, Aunt Lynn, Stacy and Matt this weekend, anxious for baby Jones to come next month.

Lots of Love, Mary Beth Beebe