Hi Everyone!

I wanted to do a post before but with all the appointments and taking care of 3 kids I havent been able to get online that much, Thanks to the wonderful ladies that emailed and visited Samantha's webpage asking about her I thought ok maybe I should get over there and share the good news before I get swamped again.
I will start from where I can remember from my last post (i think LOL)

Samantha had gotten an infection in her incision and intestines where they performed the surgery and they had to go in and clean out all of the infection which was not a good thing for any of us and we thought it would set her coming home date into september once again, within days the infection was fully gone and Sammy was having a great week -health wise. They had took her off breast milk feedings and started her on Aliemtum (sp) and two types of stomach medications reglan & pepcid to control her throwing up and bowel problems and that has helped 110%. After they figured out most of her bad problems had been fixed they told me if she continued to do as good as she was they would let me take her home.

I stayed in the NICU for 5 days & nights with her making sure nothing happened, and I thought me staying there would help her stay on the healthy track, it seemed like everytime I left the hospital is when she would get sick and I couldnt handle hearing she couldnt come home again, so I stayed. It worked though, she continued to stay healthy with no major set backs at all, a few minor things that fixed themselves, She was supposed to come home on the 10h but didnt come home until Aug 12.

So anyways Sammy is home and doing great! Shes been home for about 1.5 weeks, and is 44 days old I feel kinda sad that I didnt get to have that "newborn" at home because now she seems to be so much older than she really is. She is now 8.12 lbs and 18 1/2 inches, She has gained over 2 lbs but only 1/2 inch since birth, shes tiny but to me she looks bigger.

She has the softest cry, not one of those high pitched "need ear plugs" kind of cry, she barely cries for anything but when she does she doesnt want to stop crying. Sammy spends most of her days sleeping and stays up a little too long during the night, and eats a lot. I cannot believe how much she looks like my other daughter Kayla. People stare and ask is she going to be ok, like she has this horrible disease, its really annoying that people are so ignorant, i mean yes ask questions but dont ask me questions like is she going to be ok, shes doing great, she might look a little different but thats alright. I cant be any happier with Sammy, she is mine and I am hers and thats all that matters.

Im thrilled to have her home! I am however not thrilled with the doctors appointments, the nurses at this point. She still has not started head start program but the doctors want to see her weekly and there is this nurse that comes to the house and watches me take care of her which is very upsetting. Im home a few days a week but then the other doctors from the hospital need to see her once a week too which is a 2 hour drive that i shouldnt have to make when she has her PCP here. Its confusing right now, nobody knows what they are doing and its making me kinda upset that I have have to travel here and there to see doctors who arent helping me in any other way but doing weight checks. She has another follow up appointment with the pedi surgeon to make sure that everything is going smoothly inside her bowels.

I wish the headstart program would get the ball rolling here, I dont want to have to wait a long time to get Sammy started. How long did you have to wait for early head start?

I thought I would be getting a lot of help from different agencies for traveling, formula and so on, but I have yet to get approved for anything. Im having a bit of trouble getting stuff I need for Samantha and they dont care so we have to get this straightened out as soon as possible. The state is the worst and they keep giving me the run around.

well I went on for a long time now about everything so here are a few pics from the past few days.

some are from discharge day to now. I still have to upload new ones so I will post them when I get more time Its very hard to get all three of them looking good in one picture lol I think they had enough already.

What a precious baby you have! Sounds like she's had a really rough start, I hope you guys can start to settle in at home. The appts do taper off, I promise!

I soooo loved the BIG Brother, BIG sister shirts, what a cute family you have. Glad to hear that Samantha is home and doing better. Where is Tioga County in PA?? I'm from DuBois PA which is Central PA. Take care and hope you get the ball rolling on Early Intervention and such.

YEAH! I also love the big brother/sister shirts!

Great news!! Your children are all beautiful!! Samantha looks adorable in her little outfits, so stylish!!

aww she's so little and so beautiful!! she's a doll!

im so glad that she's home finally.

btw beautiful kids

So glad Samanthas home. Things will settle down with services. You just relax, concentrate on having some fun times as a family and enjoying your time with her. Get out and about, aim to lead the same life as you did with your other children. The silly comments do tend to stop once people see you getting on with things, laughing and enjoying life just like everyone else. Once Dominics physical health improved our life's returned to pretty much the same as before. But better we laugh, play and enjoy life much more, because we make the best of each day and don't take anything for granted.

YEAH SAMMY!!!!!
So glad you got her home. Now the fun can start.

The best news I hav heard in a long time! She is a fighter....watch out! SHe is such a sweet little thing, I love her little outfits. Can't wait to see more pictures. Give her a little squeeze from us!

YAY!!! I'm so glad she's home and you guys can start getting a more normal life again (although it's going to be a very "new" normal!!) Darah started early intervention at a month old...we were in the NICU for 15 days...so it took about 2-3 weeks to get it going after we were discharged. Good luck, but remember to just enjoy your new baby too. I think it can be so overwhelming because there's so much to learn, but it will all come!!

I'm glad your little one is home. It is very overwhelming at first, but the apts will slow down as earlier mentioned. Make sure you enjoy your sweet new addition. She is just beautiful!

She is a beauty! Sorry you are getting the run around. You might try reaching out to your local Ds support group to see if they have ideas to help improve the state's response and to get your therapies started. Good Luck!

She is absolutely precious and it appears that she is doing wonderfully. Enjoy her!