Monday, May 18, 2009

Day 39--May 18,2009

I know that on day 11 of Katie’s Story I said that “Our day started, for all practical purposes, yesterday.” I really thought that was true statement until today. I can honestly say tonight that my day did start yesterday. If you read day 38 you will see that we did not get to bed Friday night until after 1:30 a.m. and then got up yesterday morning about 6:00-6:30. We did not know that once we got to Duke we would not be coming back. As I mentioned yesterday, we were allowed to keep Katie all by ourselves in the Care by Parent Room. This was absolutely wonderful except there was little sleep to be had.

At present, the best that we can figure is that Beth and I got about five hours of sleep between us since Saturday morning. No one can sleep in a hospital! The baby was doing her job, and we had to feed her every two to three hours. Keep in mind that Beth has to pump milk every three hours as well. Also since Katie is not real good at this eating business it sometimes may take an hour to get her to eat one and a half ounces. This child is going to be extremely labor intensive until she learns to eat properly. We are not complaining and it was a joy to have her all to ourselves! We are thankful for every drop of milk we got her to drink, and for every minute of sleep that we exchanged for precious moments in the dark holding our baby.

Katie responds real well to Beth and I, relative to the nurses, when it comes to feeding. Over the past 36 hours we have managed to get her to take several 40+cc bottles and three that were over 50ccs! Keep in mind that this is work for all of us, and many times Katie is wet with sweat by the time we are done.

Even after 39 days Katie is still below her birth weight. The nutritionist tells us that the energy needed to breath, suck, and swallow is actually exercise for Katie. Basically she burns about as many calories while eating as she takes in. That is why it is so important for her to keep taking larger volumes in a shorter period of time.

As we look back over the past weeks, it was not too long ago that we were jumping for joy when she ate double digits like 10-12ccs, and now we are achieving over 50ccs on occasion. She is making progress, and we are proud of her.

Apparently we proved to the nurses and doctors at Duke that we did indeed possess the ability to provide for her care around the clock, and they have offered us the following option. We, meaning Beth and I, must take a class on inserting as well as maintaining and caring for a naso-gastric tube. Not only will we have to take the class, but we will have to insert an n-g tube into Katie. Katie will come home with this tube, but it is for “back-up” only. That means that if for some reason she does not get in her minimum amount of milk volume required for one day by mouth, then we will have to put the remainder through the n-g tube. If we can prove that she will consistently take in the daily minimum or more then we can remove it, probably within a week or so.

Since Beth is already a Registered Nurse and CPR trained, she was ok, but I also had to take and infant and toddler CPR and Heimlich maneuver class. We will also have to go over a lot of ground rules about visitation and people around Katie when we get home as well (more on that another day), but we are tentatively scheduled to come home on Wednesday! That will be exactly 42 days or 6 weeks after she was born. We are so excited that we can hardly stand it.

We are both physically exhausted, not just from the last 39 days, but from the last 48 or so hours, however our jubilation cannot be subdued. We were told by the nurses though, to not tell Katie, as that always made them do something screwy and mess the whole thing up. We have taken their advice and have not mentioned it to her. For Katie, it should be a surprise.

We are comforted that strength comes in many forms: metal, physical, emotional, spiritual etc. Isaiah 40 verse 31 promises “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Beth and I daily strive to do the Lord’s will. He has promised that he will not put more on us than we can bear. We have spoken at length with other parents in the ICN and TCN at Duke whose precious babies have been hospitalized much longer than Katie, and may continue to stay long after we are gone. It would seem that the burden of this stress would be more than many could bear. Perhaps these parents, we, were chosen to have children in this condition in order to spare another set of parents who may not have the strength in any form to endure this exhaustive experience. I know that the Lord has renewed our strength daily, not just physically, but emotionally, mentally, and most definitely spiritually. How anyone can see these little miracles, and then declare that there is no God is beyond my scope of comprehension.

Thank you oh Lord for the gift of your strength, which enables us all to get through situations that seem hopeless!

Andy and Beth

2 comments:

  1. Thinking about you all as my husband and I have been down this road. Our daughter Ava was born in 2006 of CDH. She is still struggling with it's effects. I pray that your journey leads you to peace and understanding and on top of it all it has brought our family so close. We also never take one day for granted as we never know when tomorrow will not come. Just know I understand and please let me know if you need an ear. I know somedays can get pretty dark. KNow that God has her safely in His arms!

    ~Terri, Brian, and Ava
    http://avaslifewithcdh.blogspot.com

    ReplyDelete
  2. Jessica SingletaryMay 19, 2009 at 6:37 PM

    We are so excited that Miss Katie will be going home soon where she belongs. It has been a pleasure and honor getting to know the Cole family. Anytime you want to send Michael this way just give us a call. :)

    We pray for your family daily and if there is ever anything we can do again just say the word.

    We love you guys!

    ReplyDelete