Saturday, November 15, 2008

A Change of Plans

Today we got some good news and some not so good news. The good news is that Josephine has gained 5 ounces this last week. we are very happy about that. She really has been eating a lot and she really lets us know if she thinks we are skimping any. She still eats every three hours on the hour, but over the last week we raised her amount twice. We are only up to 42 cc each feeding with about 5 or 10 cc of pedialyte between feedings. Even with this she usually starts to fuss a little about a half hour before her next feeding. Dr Russel our pediatrician told Clara that we would know better than he when she needs an increase of food, but only to raise it by about 2 to 3 cc at a time. Like Clara said in her last post Josephine is doing remarkably well. She is alert more of the time and we are coming to know her little personality more and more each day.
This brings me to the not so good news. Since Josephine has been doing so well we decided to take a trip to visit my mother this week end. As of yet my mother has not been able to meet her newest grandchild. Due to her age and health concerns she is not able to travel far, so we planned the three hour trip to visit her in southwest Missouri where I grew up. Now before anyone should become alarmed we have spoken with our pediatrician and he has told us that there is really nothing we can do to forestall or hasten the eventual outcome of Josephine's condition and that we should, as much as possible, try to do normal things with her. So if for no other reason that I wanted to see my mother, we decided to take this trip. Anyway, half an hour into the trip Josephine stopped breathing and turned quite blue again. This happened as we were in the middle of a convoy of tractor-trailers west bound on interstate I-44 just outside of Lebanon. Needless to say it was a stressful moment while we made it to the nearest off ramp and coaxed our little girl into taking a breath. We don't know how much time we will have with Josephine we could have today or we could have longer. There is really no way of telling.
I'm very sure now that Josephine's blue periods are related to her digestive functions, because as soon as she had a rather large bowl movement she began breathing again. Poor kid, the whole incident left her absolutely drained and limp in my arms. We decided that it would be best if we postponed the trip to grandma's till another day, and we headed home. By the time we got back home all three of our children were sleeping peacefully.
Right now Josephine is doing well. She has eaten twice since getting back and has had no more blue spells. She has had a rumbly tummy, but simethicone and pedialyte between feeds has kept things moving along nicely. I'm sorry if I alarmed you Mother, we'll try this again another day.
I love this little girl, more than my meager words can express. I am grateful to the Lord and especially to my wife, Clara, for giving her to me. My natural instinct is to wall off my heart in anticipation, but this little angle has opened my heart in ways I could never have imagined. She has inspired me and motivated me to be a better person. Episodes like the one we had today truly terrify me. I know now what my father was going through when he wheeled my mother away from the glass when their first born son, Mathew, struggled for breath and died. It's a hard thing watching a child die, and if there were anything I could do to keep the pain of it away from Clara I would do it.
Since Clara and I found out about Josephine's condition, we have been steeling ourselves for her eventual death. It may seem that we have resigned ourselves to her fate. The truth is that we would like nothing more than to have our little girl stay with us forever. I really want to see this little one grow and mature and live a normal life. I even want her to bring home a boyfriend and drive like a crazy teenager, but sometimes things like this just don't happen. Sometimes the people we love the most die. Sometimes bad things happen to good people. It is easy to be angry and say, "life isn't fair." Well the truth is that life isn't fair. Life is cruel, harsh, and painful, yet it is in this life that we are able to find our greatest joys. The happiness that I feel at being a proud father is made all the sweeter by knowing how scarce and precious this time with Josephine is. It is also made stronger by knowing that this little girl is ours forever. I know that Clara and I have been sealed to eachother and to our children for time and all eternity. If we live up to the covenants we have made with the Lord, we will be reunited with our family in the next life. I am greatful for and humbled by this knowledge. I know that our Savior lives and through his atonement we can find our greates joys in this life. One of the greatest is that of an eternal family.
May God bless you all.


Cary said...

God bless you and your sweet little girl. Your family is in our family's prayers.

Trevor and Melissa said...

Your family has been in our prayers since Josephine's birth. Your positive outlook on her situation and faith are touching and a strength to our family. We wish you the best. Thanks for sharing your special story with us.

Trevor and Melissa