E-mail of 4/15/2010:
All:
First and foremost, I wanted to thank each and every one of you for all of the e-mails, texts, and messages that you have sent to us regarding Miss Elizabeth. Each and every one of them has been read and re-read as Kathryn and I draw strength and endurance from your kind words and prayers. Please feel free to continue to send them as you wish, and know that we are treasuring them as we continue to care for Elizabeth. For those of you reading this that have experienced the NICU and its unique sub-culture, none of the following will be a surprise, but to those of you uninitiated to the wonder of this place, let me set the scene from my rather skewed view: I think the NICU is much like a casino--there are no windows or overt sensory acknowledgements to the outside world. Once you enter the inner sanctuum, you have little to no idea what time it is or how long you have been there. Further. in an attempt to blot out any memory of possible distractions, the rules in the NICU prohibit us from bringing in cell phones of any sort. So, in essence, Kathryn and I go "off grid" when we enter the NICU. As a result, if you don't receive a response from us, please know that it is not because we aren't reading your messages, we are just in the cellular black hole of Presby-Plano. It is refreshingly retro in that respect--and yes, to many of you, there was a time when people did function without cell phones. Strange, but true!
Anyway, Elizbeth is doing really well in her new digs. She has continued to amaze and astonish many multi-degreed medical professionals in the way in which she is doing and performing things that frankly she wasn't thought to be able to do. Apparently, no one thought to tell Elizabeth, so she has decided to just do them anyway. You go, girl. She is very alert and likes to follow people around who are talking to her, she lifts her head up often, as both a statement of her displeasure at whatever you may be doing at the time, and also, I think, just to show off. We are going to have to work on her humility a bit. She is not on any type of machine to regulate any systemic function--a true rarity down here. Her sole goal in the NICU--for now-- is to get her feeding consistent and fully on a bottle. She is working wonders on that as well. Yesterday was tough, as Elizabeth decided to apparently let Kathryn and I know that she was still in total control and was not--I repeat, NOT--going to take a bottle if offered at the time offered. We are pretty sure that she was ticked at us becuase we had allowed all those doctors to do a littany of tests to try to figure out why she is...well...awesome. (I'm pretty sure God could have informed them, but then again, it wouldn't have been half as fun to watch!) Anyway, she stood her ground and resisted the bottles and got a small feeding tube for her trouble. (first little lesson in moral stands, I guess). So, yesterday was tough on Kathryn and I as we wanted her to get consistent on feedings to justify her escape from NICU. But, alas, so it goes...
Cue today: After her little snit fit was over, she has decided to see the error of her ways and has had some pretty awesome feedings. Her last one today--at 8:30 this evening-- was her best. She is on a good road, and in all seriousness, we want her to continue to take the bottle well and take in enough volume to get her weight up and growing. Our prayer remains for her to have consistent feedings on the bottle and increase her capacity as needed. She is a pretty amazing little girl and we want to continue our good progress. We know without a doubt that your prayers are assisting mightily in this task. For that we truly and humbly thank you.
Kathryn and I cannot say enough great things about the Presby NICU. It is a great facility with great professionals who have patiently and caringly taken in these two old parents who are confused, scared and emotional and--to their credit--they have not filed a TRO on either of us yet. Kathryn remains a stalwart person whose endurance is simply astonishing. She is in the NICU all day and never seems to tire. She is an amazing lady. Keep praying for her endurance and strength.
Finally, to explain my random title of this e-mail: Our Sunday School class (headed by the now appendix-less Mr. Gillen) is studying Exodus and I was reading some verses to just keep my mind off the crazy stuff last week, and I came across the story of the Isrealites who had been wandering the desert after being freed by the Egyptians. They were hungry and asked Moses to talk to God about this. God decided to give them the wondrous miracle of manna every morning to sustain them as they wandered the desert. But, in the story, God warned the Isrealites to not hoard the manna as it would spoil and rot by the next day. They were told only to take enough for them for that day. Of course, the Isrealites were not fast learners and some hoarded their manna. And, it spoiled and rotted. I thought about that little story today as Kathryn and I were trying to wrap our minds around all this NICU stuff and everything related to it. I thought that maybe--just maybe--we should not try to hoard the blessings God gives us--storing them up to use as some type of credit for tough times--instead we should joyfully and fully accept the daily blessings He provides and have faith that He will provide again tomorrow as we need. In other words, slow down and appreciate the provision. So, we are doing so now. We appreciate His provision for Elizabeth and her truly miraculous presence here and with us. She is wonderful, and we will continue to have faith that God will provide exactly what He should for us as we need it. (I think that was the lesson in that--or I have not had any sleep in four days and I am attributing nonsense with logic...)
Thanks to each of you for your continued support and prayers. We appreciate them--and you--more than you can ever know. Feel free to forward this to whomever. I hope I got everyone, but I am positive I have not. Lack of sleep and all...
Matt
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