How wonderful the news is mostly good! You and your husband may want to consider getting sling or baby pack for the little one. He can be upright in them, but still very close to you for comfort yet your arms get a rest. I couldn't live without my maya wrap for my daughter!
www.mayawrap.com

My prayers are still coming your way. Hopefully you will all be home soon and out of that awful place.

When my daughter was a small baby she would not sleep lying down due to her medical issues. We ended up letting her sleep in her swing quite a lot. We also put her carrier in her cradle next to our bed because the swing would not fit. That way I could still rock her and she could still sit up. Luckily for us it only took a few months of therapy before she would sleep in a bed, but until then you do whatever it takes to get them to sleep, unfortunately you can only stay up with them for so long!

Dawn, please know that I am urgently praying even know as I type for a complete and speedy recovery for you son, and for strength and endurance for you and your husband as you deal with all of this. May God draw you close to Him during this time, and give you the certainty that you can rely on Him for all your needs.

Dawnie - Keeping you, Eljay and your husband in my prayers!

One of my best friend's sons was born premature and had this same problem. It will pass eventually but it is so frustrating and nerve-wracking. You and your family are in my thoughts and prayers.

Dawnie....I have not been in either cooler in a long time. I stay so busy at work. I did not realize that your son was having problems. My family and I send extra special prayers for your family and we lift your son up in prayer!!
Please take care of yourself! TBB

These are not my words, but they express my prayer better than I could:

O God, by Whose help all things grow to maturity and, once grown, are kept strong, stretch out Thy hand over this, Thy young servant, Eljay, in his sickness, that he, having regained his health and strength, may grow up to full manhood, and unfailingly offer Thee a loyal and pleasing service all the days of his life.

Dawnie, I'm thinking of y'all. Sending love & best wishes from Dallas.

I'm glad they were able to discover this sooner rather than later. My great nephew had this same problem but he is a very healthy, happy 2 year old now. Hopefully the medications are helping him eat more and helping all of you sleep more.

Has anyone heard from Dawnie? I was hoping her little guy was eating and sleeping better.

I was just thinking the same thing MD. Anyone heard from Dawnie?

Dawnie just emailed me this today.

Quote:

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I'm overwhelmed as always! This baby stuff is much harder than CRA! (Or maybe I just don't have a resident guru to answer my questions)

If you'd be so kind as to post an update for me I'd appreciate it. I only get a few seconds some days for email and I'm trying to sort through the hundreds here (dang spam!).

We switched formulas again to a formula without corn, which we though was the answer. We had three days of a beautiful happy baby boy, curious, exploring his hands (he didn't know they were attached before that) smiling, looking around his world. It was wonderful, but unfortunately when we thought we'd nailed it he started rejecting the formula again. This had been our best three days since birth so dad and I were pretty dejected. We were rushed to the only ped's allergist in the state to see if we could get an answer and after much testing we now know he does not have any allergies (I was frankly hoping for a simple allergy but unfortunately that isn't it). So we're back to the gastroentinologist (I butchered that spelling) on Wednesday of this week to test for Cyliac Disease and a bowel disease I've forgotten the name of, as well as possible structural issues in his lower intestines that could be a problem.

Despite all of this he's grown to 10lbs, but unfortunately he didn't gain any weight last week so he's dropped from the 5th percentile, down to the third and now the 2nd, which is not a good thing for preemies hence the Wednesday appointment.

He's still not sleeping more than 15 mins or so but he has been able to sit in a boppy on the bed and will be patient with us for about half an hour if the ceiling fan is on for him to look at. (He's easily amused) When he's feeling good he's a big smiler so we do know that when we figure this out we've got a happy baby in there!

Dad and I are getting a break tonight (our NICU nurse baby sitter is taking over for the evening) and we're going to the Duct Tape Ball. I'd forgotten it was happening LOL but since I invited 8 clients last year we needed to rush and get our costumes done. We're wearing "black tie" (you can wear black tie or duct tape costumes in circus themes this year). We don't like to be boring, but we were limited in planning time, so we're wearing "black duct tape ties....about 3 feet long and a foot wide" as well as top hats (duct tape, jewels and walking sticks with ducks on top, all duct tape).

I'll post after we know more Wednesday. Thanks for everyone's prayers! I miss ya'll!

(And he's calling me now....waaaaaaa waaaaa waaaaa....which I'm sure means Momma

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TR - Tell Dawnie if she has any questions on Celiac Disease, I can hook her up via email with the Director of the Celiac Disease Foundation at the University of Chicago. I know her fairly well and I am sure she would be willing to provide info, etc.

Done. Thanks, CD. I'm sure she'll appreciate it.

Thanks for the update, Truffle. Let Dawnie know she's still in our prayers!

I have positive thoughts headed North for Eljay! Let hope this appt. solves the mystery.

Hello All! It's Dawnie (someday I'll have time to resolve why I can't sign in I hope)

We are still testing and haven't found out what our problem is. ElJay is pretty much the same, but we have discovered recently that he has a malabsorbtion issue (gad I can't spell normally let alone medical words!)

Now we are testing to figure out what he isn't absorbing, which will lead us to what disease/syndrome, etc., we are facing. It can be as easy as lactase dificiency (you take a supliment for that) or back to celiac disease (if we discover this Dave I'll be in contact thanks!!) Also inflamatory bowel disease is a concern, but again, we are just in a wait and see mode now for the results.

If it's easy we'll hear soon, but they are telling us that the future testing must be done outside, so we're preparing to head to Minnesota Childrens Hospital for the balance of our testing soon either way. We still are worried that his grandma might not be able to hold on much longer and we want him to meet her

I pity the poor person who has to fly in the seat next to us I always used to groan quietly to myself when I ended up next to little ones heh heh Maybe I'll be lucky and planes will make him sleep, but since nothing else does, I'm not expecting that.

He's growing slowly, but has hit a whoping 11 pounds (EGB is your darling over 20 yet? heh heh) still no more than a few mins sleep at a time though, so dad and I are a bit worn out. I've now exhausted my time away from work so was nicely let go but my boss told me not to clean out my office so I'm hoping to return as soon as we know what we're dealing with with ElJay.

I hope all are well. EGB, that darling baby is...well darling

Dawnie

Wow, more mixed news, prayers are still headed your way from Texas. It's cool your boss told you that though...

Dawnie, if you let us know when and where you'll be in MN, I'm sure a number of us in the midwest contingency would be happy to help in any way you'd like. We could babysit (I have the official granma's seal of approval )so you and Sr. could get a good night's rest or just point you to good eateries or whatever. Leia, Mom of Princess Natalie Bear and I and a few others are here if you need us.

Dawnie - I live in the Mpls metro area - which Children's are you going to? Mpls or St. Paul - I drive by Mpls' (and we were just there a few weeks ago) and St. Paul's is just up the road from where I live.

Do you need a ride from the airport (I'm near that too) I have a carseat you can use if you don't want to haul one. Have plenty of baby stuff you can use. Let me know what I can do - I'm sure you'll need some rest for you too. Truff has my email.

In the mean time, know my prayers are with you. I've decided there is nothing worse than having a sick child (or at least I haven't experienced it yet). (((hugs)))

** Let me know if you need a place to stay!! **

You sure are being put through the wringer. I will keep you and Eljay (and Big Jesse) in my prayers. Take some of the midwest component up on their offers. You need a break. Sorry I am on the East Coast! Take care.

corkygirl here, forgot to sign in from home tonight - been too busy to check out the "couch" lately so I want to add my prayers to all of yours for Eljay (and of-course Mom and Dad ) Hope that the trip to Childrens in Minns finds the answers you need and the help for your little one. You'r right, there is a happy little boy in there, he just needs someone to find out how to help him feel better. Love to you all.

prayers from Hawaii...I know the type of exhaustion you are under. My husband and I (on advice from my ob) took turns sleeping for 1-2 hours at a crack and working up to the optimal 4 hours a night (I'm still on that schedule - 5 years). That kept us cognizant to what was going on and helped us calm our little one.

Continuing to keep you and your family in my thoughts and prayers, Dawnie. I think it's just wonderful that you're going to take ElJay to visit his grandma. Have a safe flight!

Dawnie, know my prayers are with you and your family. The power of our BOL friends are great. They have certainly helped me over the last few weeks. I hope all goes well and I am postive Grandma will be proud.