What a beautiful day to praise the Lord. Happy Easter every one! Our baby girl seems to be making improvements by degrees. The Doctors have been able to remove her Cethetor and now she is actually urinating in a diaper!!! WOOOO-HOOOOOO!!! We'll take well any way we can get it.
Other exciting news is that she is stabilizing so well that they have been able to gradually reduce the amounts of her blood pressure medication until she is now not on any!!! So of the seven drugs normally given to infants with Congenital Diaphragmatic Hernia's (CDH from now on) she is now on NONE! Praise God.She is also being slowly weaned from the High Frequency Ventilator, and the amount of Nitrous Oxide that has been used has been reduced from 20 parts per million all the way down to .5 parts per million. All of you prayer warriers are fighting a winning battle!
We have had another really nice treat. We are allowed to come and "help" every four hours with her routine exams and cleaning. Starting at her head we get to remove those little shades and see her beautiful eyes. We then get to sort of swab her mouth out with gauze ans saline solution. It's kind of like washing her gums and lips. The nurses flush some of her lines to keep them clear and functioning. The tiny little blood pressure cuff is repositioned from either leg to arm or the other way around. They just switch it between the two places. Lastly we get to help change her diaper. Who would have ever thought that diaper changing could be so looked forward too? Mostly it is a time for us to touch and bond with our little girl. As parents we are allowed to do it with no gloves after donning a gown, a good hand to elbow scrubbing and copious amounts of that alcohol based hand sanitizer. You all know me, I am a mechanics teacher, a certified welder and all around lover of anything rusty or greasy, but I am the cleanest I think I have even been. My hands are washed so often they nearly stay "pruny".
With all of these improvements and would-be signs of getting better, our happiness is only dampened by the realization that we are trying to make her better only to make her worse. All of these steps have to take place to ensure that she is strong enough to survive the impending surgery. We have been told that once the surgery takes place she will be as sick or sicker upon completion as she was when she arrived. The two to three days after surgery are going to be very difficult days. We are stregthening our faith and renewing our contracts with the Lord, as we know that he will to continue to provide the wonderul peace that he has already blessed us with.With all of that said;....the factulty and staff have encouraged us to come home. We have two children and we cannot neglect our little Michael. So, we have come home for the day to have Easter with him, and attempt to have a somewhat normall day and night for his benefit. He is too young to understand why his little Katie can't come home. Beth is still also having to recover from delivery. She was released only about 16 hours after Katie's birth, in order to be able to be with her, but it has been really tough on her. She has been really weak and somewhat wobbly from blood loss associated with child birth. Added with sleepng in hospital chairs/cots has not helped either. Since Katie is so stable and doing so well were strongly advised to come and get some much needed rest, because the hardest part is yet to come. As we were told this is the "Eye of the Storm", that proverbial "calm". If there was a time to spend as some symblance as a normal family unit with Michael this may be it, for a while at least.
The thought was discussed about splitting our watches, but in short order the realization was evident that not only did Michael need us and we need him, moreover Beth and I need each other. So the painful decision was made to come home if only briefly.This was a terribly hard thing to do. My head understands it, but my heart was torn out having walking away from that room. However she is not alone. She has her own private Nurse practitioners and Registered Nurses watching over her 24 hrs a day. We were given a direct line to her bedside and encouraged to call as often as possible. Nanna Joan offered....er..uh...demanded to stay in our stead. Granny Irene and Papa John offered ...oops scratch that too...demanded that they get their turn tonight. Papa Benny has been so kind and selfless as he has been watching Michael. I know that his heart and desires are to be by little Katie's bedside, but he has been providing invaluable services as a jungle gym, "Mow Mow" driver, Shopping cart pusher, Supper buyer, Pajama puter oner, and yes even.......duhn duh duh duuhhhnnnnnnnnnnnn...............POOPY DIAPER CHANGER MAN!!!!
We Love all of these wonderful grandparents for the support that they have shown us. Beth's grandparents even sent us a package of home cooked fried chicken, peas, deviled eggs, potato salad, and chocolate pie. We had that waiting room smelling right! We will never be able to repay the displays and demonstrations of kindness that have been shown to our little family.I have attached a couple of photos of Beth helping with the those special touchy feely times. Since Beth is also a registered nurse she also gets some stethoscope time.
Keep the prayers coming!