Thank you God for all the wonderful work you have done through my daughter!
Sunday AND today I had nurses that helped with Lilli when she was on ECMO, and they love her, Im sure they say that alot.. but I choose to believe it. Each of them was just SO suprised at how far she has come- they didnt just mention it once, but constantly throughout the day! Madonna was our nurse today and just kept saying "I cant believe she is sucking!!" and " I cant believe she is on full feeds already!!" - Madonna was the nurse telling me before: "Now dont be suprised if she throws all this food up or if it all comes up when we check for residuals... many CDH babies just cant handle milk for awhile.." - but IT NEVER HAPPENED THAT WAY! We tried nursing again today but Lillian was too worn out from the O.T.(occupational therapist) coming right before we tried to nurse...
O.T. worked with her and was also suprised at her grasp on sucking over the weekend, she WANTS a binki now and she will suck away! She has a hard time holding it herself, but man she tries! Mary is my occupational therapists name, and she would get Lilli to take the binki, and once Lilli would suck, Mary squirts a tiny bit of milk in the side of Lillians lips... If Lillian isnt sucking well she chokes... but if she is, it brings the milk to the back of her mouth and she can swallow.. sometimes its a little slow, sometimes she does great... but it just takes practice! Tomorrow Mary is starting bottle feeding with a slow flow nipple, I am anxious to see how it goes! And I will start trying to nurse once a day for 5- 10 mins. She is on a roll and I am determined to help her avoid another surgery and NOT have to get a gastric tube in her stomach. We arent giving up on this sucking!
Her blood pressure is still pretty high, they have done a urine analysis and there was 2 plus blood in it... DUNNO WHAT THAT MEANS! But that is a very small amount. They also did an ultrasound on her abdomen to check for any clotting and nothing showed... So tomorrow they are having a Kidney specialist come see her- Im not sure what this doctor will do or can do... but hopefully nothing serious is going on and her blood pressure is just high from morphine weening... WHICH, morphine is now only being given once every 12 hours... each time they ween it the first day seems pretty tough for her. I can tell her color is pale and she is sweaty and very irritable, it kills me that she has to suffer that way, but Im glad she didnt have to endure any pain through all the other crap she was going through.
I am still set on having her home next thursday.. if everything is okay with her kidneys. Tonight in the rounds at 5 oclock Rachel and I were sitting there talking and the group comes by and says " Lillian Flournoy, former ECMO baby, left side diaphramatic hernia, is on full feeds, q 12 on morphine, should be home by next week.." Rachel, at the top of her squeeky little lungs yells "WHAT? CAN YOU SAY THAT AGAIN!!??" And the Dr laughed and said " She should be home by next week. Moms birthday is next thursday the 6th right? So thats what we're aiming at" ... :0)
When they told me they would help me get her home by then.. I didnt believe them, why would MY birthday be of any importance in this situation? LOL (by the way, its rude and your totally not suposed to speak while the doctors are doing their rounds...) but it sure was good to hear THAT!
I am imagining our life out and how wonderful it will be, but then I think about how much I will really miss these nurses I have had... How do parents do this part? I LOVE my nurses- they saved her life, and took care of her FOR me, when I couldnt, when I was helpless! Im already preparing myself for the strange feeling I know will come with leaving there- no beeping, no other cries, the smell, hearing the dr's constant updates... kinda scary to leave all that! I cant imagine how tough it must be for families that have been there for months on end! God Bless them...
Please keep Lillian in your prayers for a healthy report on her kidneys!
We love you all,
Lauren and Lillian