Sunday, May 17, 2009

Day 15--April 24, 2009

Yet another day of progress! Albeit, small progresses, but better than big set backs!This morning as Beth and I entered the small room where Katie “hangs out” we were surprised to see that she was not in her basinet. No she wasn’t on the floor, or abducted by extraterrestrials. The kind folks at Duke had decided that she had graduated to a crib!We call it her “Big Girl Bed!”When I saw Katie the first time here at Duke, she looked so big. This was in part due to all of the hoses, tubing, and wiring that was in the basinet with her. She appeared to take up all available space. As these items have been gradually removed one by one, Beth and I have commented on how small she looks with so much empty bed around her.Now she really looks tiny in that big ol’ crib. She is absolutely beautiful.Of course this apparently incredible shrinking baby is not so much fantasy as fact. When Katie was born she weight 8 pounds .04 ounces. As of the last time she was weighed she only weighed 7 pounds and 4 ounces. This rapid weight loss is due in part to the fact that she hadn’t really eaten until the past few days. The majority of her weight loss is attributed to her highly elevated metabolism as a result of the high amount of morphine she has been on. This is only compounded by the high amount of energy needed to breath at such a high rate of speed. The withdrawal symptoms that she has been fighting for the past couple of days have only made her weight loss worse. As you can see in the photos she looks quite gaunt. We are confident that she will be gaining weight quickly over the coming days and weeks.As far as her withdrawal symptoms are concerned, she seemed to be much better tonight. I think she is exhausted, and she spends most of her time sleeping now. It is difficult to get Katie to wake up for any extended periods of time. Beth and I are content to just watch her sleep for hours on end, as we know that this is the best medicine for her at present.Katie is also tolerating her feedings quite well. She has been assigned to all kinds of therapists. Several of which are speech and feeding therapists. They have been working with Katie to teach her those suck, swallow, and breathe reflexes. Today was the first time she has been allowed to attempt to drink from a bottle nipple. The therapist used a syringe to drop a bit of milk in Katie’s mouth to give her at taste, then she inserted a bottle nipple only into Katie’s mouth like a pacifier. As Katie began to suckle, the therapist gently dropped in a little milk and watched it disappear!SHE DID IT!!! Katie suckled a bottle nipple for a second. It was only 1cc, but she did it. It was very encouraging to watch that jelly bean sized drop of milk disappear from inside the nipple! By this time Katie Darlin’ was exhausted and dropped back of into a deep slumber. We finished her feedings through the naso-gastric tube.The therapist said that this was a great start. SO great in fact that orders have been left for therapists to work with her over the weekend. According to our nurses this is nearly unheard of. Katie’s respirations are still really high, but the doctors think that she has the ability to compensate. With all she has accomplished I don’t doubt that at all!Beth and I were told that we would have to be patient, as this learning curve might be steep. We should prepare ourselves just in case this takes time. I quipped right up, and told the therapist that Beth was a registered nurse, and that I was a school teacher. She didn’t know it yet, but that she had been talking to two very patient people.It was then when I realized God’s message to us today. It only took a minute to find the following scriptures in the book of Romans chapter 5. Especially verses 3 and 4.1:Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: 2: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. 3: And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; 4: And patience, experience; and experience, hope: 5: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.Patience is a hard thing to learn. As educated people it is hard to give up control. However learning to work on God’s time, and not ours will make us all better Christians. I have meant to go back and re-read the first 14 days of Katie’s story, but have not done that yet. However, Beth and I do not recall ever asking God for an instant miracle. Many who pray want what they want right now. We know that we have asked for prayer for healing on behalf of our daughter, but we have not put a time limit on God’s work and blessings. Once we can learn to just say “alright Lord, we’ll be patient” it is much easier to serve him, without feeling left out or slighted.Lord, grant us patience! Please continue to extend what you have already stretched to near the breaking point! We’re waiting for you!Oh by the way: They have increased Katie’s milk volume to 35 mL!On the home front, Katie is not the only trooper. Michael was bitten on the left had by nine, count’em, 9 fire ants while playing in the yard. Do you know that he never shed one tear! He did whine a bit, but we didn’t even know why until WAY after it happened, and we found his toy truck in the mound! He is tough as a lighter knot too! These children come from good stock!

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