I need mail LLLOOONNNGGG UPDATE

Hello and Happy Saturday to all of my JMB friends, I can get email ... please drop me a message if you have a chance. I am connected ... could not take sitting in this hospital room feeling so disconnected from the world. My laptop has a free AOL trial, so I signed up for it. WOOO HOOO. I have configured outlook to send and receive but only the receive part is working.... I am thankful for the internet connection and the ability to receive emails for now!!!! To update on Gracie's condition... They placed the feeding tube Thursday night; all went well until sometime between 2am and 5am (I had the nerve to fall into a deep sleep) she pulled the tube. Her morning weigh in brought a gain of a few ounces. I was very pleased. Around 7am, she started with diarrhea again, 11 total yesterday. Her little bottom is raw, we are putting a coating of barrier on it, and it is like glue, cool stuff. The feeding tube remained out all day Friday. She did not eat well. I can tell you if I were pooping every hour, my belly probably would not want to eat either. I am anxious to see what this morning's weight will be. We are not sure what caused the diarrhea. They used the wrong kind of Pediasure in the drip. I think that this may have contributed to her having the diarrhea. I called Ross Laboratories and talked to them about the differences in the products. The Pediasure that she was given is not for tube feedings, should not be left out for more than an hour (it was in her bag for at least 6) and has a high osmolality, which means it is higher in sugar which causes your gut to pull in too much water, resulting in diarrhea. The other Pediasure also has high sugar content. At my persistence, they changed her feeding tube formula to Neocate Junior, a formula specifically engineered for those with digestion and food allergy problems. The doctors do not believe that she has digestion or food allergy problems but they are using this formula because it is partially pre-digested and should be easier for her intestinal track to handle. It does not have tons of sugar so I hope that will help with the diarrhea. "We" put the feeding tube back in (I tried but could not get it in and she was screaming so I handed it over to the nurse) She has kept it in through the night and has had a much calmer night than Thursday night. We went to the hospital chapel yesterday and attended a very nice Good Friday service. We are off isolation and allowed to leave the room -Yeah!!!! The current plan is for us to go home on Monday. I hope she is progressing and that we will be able to go home. A medical equipment company is going to come to set up the pump and provide the necessary supplies for a months worth of tube feedings. Jen update... I weighed on a scale at the hospital yesterday.... 249.6.... woo hooo. I hope it is not because I am dehydrated. I am doing better, not reaching my goals but I probably had 40 or so ounces yesterday. I probably had 8-10 this morning so far. I have been having 1-2 shot of profect and have been drinking all of Gracie's milk from her food trays. Sorry for the length of this message, it is therapeutic for me to put it down on paper. God Bless, Jen

Jen, My prayers are with you and Grace (your whole family)... I am sure that this a very trying time for everyone concerned. My son was in the hospital when he was a baby and I can just remember the feeling of losing all control. Not a good position for a Mommy. Hopefully Grace will be home on Monday with everyone and the love and being in her own home will help with her healing. God Bless you and your family.... Kathy

Hi Jen! I don't post as often as others on the board, but everytime I read a post about you and baby Gracie I always say a quick prayer asking God to put His hands and blessings on you and your family. My family has had a lot of serious medical issues over the years, and anytime I would start to get anxious, stressed, depressed, worried, etc I would simply say outloud "Lord, I put my faith in you"-- somehow that always made me feel better. Here on earth we can only do so much, yet I find such comfort in knowing that God is always with us, and He ultimately is in control. On a happier note, I'm so happy you guys are going to put on your Easter best and try to enjoy the day, even if it will be while you are still at the hospital. My thoughts and prayers go out to you!!

Jen Dont apologize for your message. Thats what we are here for. My prayers are with Grace, you and your husband. I hope she gets better soon. Take Care of yourself and sip sip sip. Kay

Kay, How do you whistle on email ... girlie you look great, I love your new pic. I am sipping, I just made my bottles for today. God Bless, Jen

Thanks Jen, Congrats for getting tha****er in. Take Care Kay

Wow, Jen- what an experience you've gone through! I am very happy Grace gained some weight even with her still being sick. My thoughts and prayers are with your family and I'll be sure to email when I can!

Wow thank you for the update! I have had 3 babies on Neocate, while in the NICU and up to 6 months old...(they were preemies, my 6 year old was a 30 weeker and my twins were 33 weekers). They all did wonderfully on it, because it is predigested protein...must easier on the digestive system. It was particularly important for my 30 weeker, who developed Necrotizing Entercolitis while in the NICU. I'm hoping Grace will do great on it too! I'm sure she will! Take good care and take care of yourself too! Hugs, Chele

Jen let us know if you need anything..Would a care package help...Let me know and I could send one out.......email me your address...My address is [email protected]

I am not a religious person and all, but I have seen miracles happen at this time of the year. So I believe that now that the Docs have gotten something going for your daughter, that you will see a miracle come thru for her. The power that be seems to send more energy at this time of the year and things work out. I send my blessings in my way to your family and wish you the perfect Easter.