Hello Everyone!

My name is Jolie and I just gave birth a little over a month ago to a precious baby girl name Murphy Kelynne. This is the first time I have posted on this sight...but have long visited as a lurker when I was still pregnant with Murphy. BTW...I did not know that Murphy was going to be born with Down Syndrome. I guess it was God's way of giving me a little nudge to check out this forum. I also have checked the Babycenter's site on Down's too before Murphy was born. Murphy was very much welcomed into the family with three older sisters, dad and the cats.

Unfortunately, as I write, Murphy is in the hospital having had a palliative surgical treatment (a shunt put in place) as she was born with a complex heart issue. she was born with Tetralogy of Fallot and AV Canal. How much more complex can a heart defect be. They took her off the respirator a few hours ago and I'm hoping she stays off of it for good this time. This is the 4th attempt since her surgery 2 weeks ago. For those whose child did not have heart or any major health issues...be thankful. It is a roller coaster of major peaks and valleys. Anyhoo...she is doing just great, but our family wants her home ASAP. She is so very much loved and wanted. We miss her so much. She is my easy-going baby and quite a hoot when she complains.

Anyway, Murph was a whopping 8 pounds at birth and probably would have tipped the scales around 9 pounds had she gone the full 41 weeks as I have a tendency to do.

I would just like to say that all of your children are so beautiful...and they all have twinkles in their eyes. Sometimes I bypass the conversations here to just marvel at the beautiful faces and the specialness of each wonderful child.

Well...sorry to ramble..I have a tendency to do that on occasion. Hope you were able to make it through this post w/out hitting the snooze button...lol.

P.S. How does one post a pic on here? TIA![/img]

Welcome, Welcome!! So sorry to hear about the heart complications Murphy is having. I hope this time she is able to get off the respirator, and bless you all with her complaining!! Can't wait to hear more about your family... by the way, how did you pick Murphy's name?- it's so different and I love it!!!

Thank you so much for the warm welcome! Yes, it was a real bummer to find out she was having emergency surgery the day we took her to see her cardiologist for a check up and she ended up having a major TET spell. It was the first one she had that she had not recovered from. To avoid those spells that we were warned about, I tried not to let her get worked up when she cried. So, I held her and comforted her continuously. She was only home for 12 days (she was 17 days old when she was admitted). Needless to say daddy and I were heartbroken (no pun intended)...as were her sisters. BTW...she had to have a BT shunt put in. Her major surgery is suppose to be in 6-9 mos. I do not look forward to that one at all. This last surgery was beset with a couple of post surgery setbacks....ie....she crashed once and then had a lovely blood infection which she has gotten through. She does have a marvelous doctor and surgeon...very attentive and chop chop!

Anyway.....Murphy is not a family name. In fact, that name was not even on our list of baby names. It just so happened that immediately when she was born I knew she had Downs....and she looked just like a Murphy to me. Hubby agreed the name fit her (the girls were less than thrilled may I add). I'd post a pic of her if I knew how to do it.

We live in central IL, just outside Champaign. I have 3 other girls besides Murphy. Alora is 12, Elyssa is 9 (MOTHER HEN) and Teagan is 4. They all keep me busy. NEVER A dull moment at our house.

Your girls are so precious.

Welcome to you and Murphy. Hope she escapes from the hospital soon--we look forward to hearing more about her adventures, and of course, to see a picture. (I would help with the picture thing but I'm a complete Luddite and have to get someone else to help me do it, so the only pics I have on the site are over a year old LOL). If you want to see something more recent, go to our family site, www.annasamigos.com

I sent you a private message. We are neighbors...perhaps we can put your Murphy and my Larkin Murphy together!!!

Mary...what a beautiful girl you have there. I love the b&w photos, they just tell so much. You did an awesome job on her website too. Extremely informative and just so cute with the graphics.

Amy, I sent you an email. Good looking family there! Beware cheekie tweaker is sitting on this side of the screen....lol.

If you all want to see Murph's website...go to:

www.carepages.com
The page is MurphyMoments.

That is all I have of my sweet baby at the moment. I haven't had the time or brain power to make my own website yet....

welcome. your baby is adorable. ( i checked out your caring page) i am sorry she is going through a rough time and pray that she gets to come home soon.....
if you want to post pictures. post them on something like photobucket.com and then use the url to paste them on here......
again congrats on your beautiful baby and welcome!!

Welcome to you and Murphy!! You sound like a wonderful family. I can't wait to see pix of all of your gang. Hang in there, you are doing beautifully. We will keep you in our prayers. MaryEllen had open heart almost exactly 1 year ago. We had to wait until she was 6 months old, and she went into heart failure prior, which we waited through. It all seems like it was so long ago now, but will always be a part of who we are. We will continue to keep all of you in our prayers. In the mean time, I am so glad you found this site.

congrats with the new baby, and welcome to the journey, u will love this site, as im sure u alredy love it.

ill be praying for murphy,

Our girls seemed to be around the same age!!! My middle one is the mother hen also. Funny side note- my last name is Teague and I always tell the girls it would be cool to name one of their girls Teagan.. since there are no more males on my husband's side and therefore our last name (our line anyway) ends with them. Right now I'll be lucky if I get any grandbabies- since I watch the baby shows on TLC and they have frighten my girls!! So far, I do have a Caliou and Rosie promised from Madison (she loved that show when she was little). Even if- she has informed me- she has to adopt, because giving birth just looks a little to painful

Hello and welcome!! Praying Murphy is healing well and home soon. And please keep us updated on her heart surgery date. As far as posting pictures, in the photo section there are directions.

Jolie, Murphy and family welcome to Down syn. Sounds like Murphy is quite the fighter - you go girl! Many hugs and prayers to her and your family during this time and we hope she gets home to you soon.

I'm glad Amy found you - it is great to have on-line friends and friends who you can see in person too.

I'm Jen mom to Brock and we live in Iowa. Brock is 13 months and doing well.

I look forward to seeing your family. Just go to the photo section - there are directions on how to post at the top of the page.

Welcome to DownSyn. Hoping Murphy pulls through everything like a champ. Cant wait to hear more about your family.

Welcome to DownSyn!!!! Can't wait to see pictures. It is amazing how God had your steps ordered before Murphy was born. He is always in control.

Welcome aboard Jolie and Murphy. I must say Murphy's heart defect does sound very complicated. I pray that she does well with all the corrections that have to be made. I have two children with DS and seven children altogether. Sam is 9 yrs old with DS and TOF heart defect. Katarina is 4 years old with DS and Complete AV Canal Defect. I can't imagine having both defects in one child. I'm glad you found us and I hope she gets to come home soon.
Mary Beth

Welcome . I hope Murphy keeps getting stronger and stonger. I like the name Murphy. It is my last name. I have a daughter age 2. She had open heart surgery when she 6 weeks old . She was in the hospital for the first 2 months old. I Wecome again to the site. I have 2 older children and my 10 year old son is the father hen.

So glad you have found us. I pray that your sweet girl is home with you soon. Can't wait to see pictures of your family! I am going to check out your carepage now. Welcome, again. You will love it here!

I couldn't get your page

Hello and Welcome. Glad you found us. Can't wait to hear more and I love the name by the way!!!

Hi...welcome, I am a new member too but not new to the DS world as my son is 14.

Can't wait for an update on how Murphy is doing...

Hello and welcome! Congrats on your new baby and cant wait to read and see pics!!!!!!!!!!

Hi Ladies:

Thank you sooo much for the WARM WELCOME. I thoroughly appreciate it. It means a lot to log in and see the welcomes.

Sorry for the delay in responding to you all. We got back from Peoria last night. As for Murphy, well...we had two setbacks. Murphy went back on the ventilator and...now she has blood clots in both legs. Wheeee.... So....she is on some what of a light sedation so all she does is sleep pretty much 24 hours. The doctors are telling me that they believe Murphy's problems are more than likely due to the pseudomonas infection she caught 5 days post-op. When we saw her Monday, she looked HORRIBLE and I mean that in every way possible! Both of her eyes were swollen shut & black and blue, her right leg was puffed up and tense (from the blood clot) and she was severly laboring to breathe....she was out of sync with her diaphragm. I bawled when I saw her. When I go up to the hospital Sunday to deliver breast milk, I better not see anything as creepy as what I saw on Monday. She looked like death warmed over.

I guess my biggest fears right now are: 1. She'll be in that hospital forever (as in a long time) and i will miss the crucial parts of her infancy. 2. She'll be ventilator dependent and have issues with that. 3. Plus, I'm thinking oral aversions might rear their ugly head too. She was a fairly voracious eater too before we had to drop her off at the hospital. Oh well...one step at a time, we haven't crossed that bridge yet.

Oooops....just realized I should have saved my story for the story board.

Hope everyone else is having a great day. Ready for Fall? I'm not...seems like summer has flown by.

Jolie, I am praying for you and your sweet Murphy. I can't even imagine how you must feel. I am sorry that this has been so rough. I am so glad that you are positive in your thoughts. I am looking forward to fall. It is too hot here.

Welcome to downsyn. I hope when you go back to the hospital Murphy will be much improved. Talitha spent 13 days in hospital, most of it in ICU when she had her heart surgery and it was a very difficult time. It sounds like you and Murphy have a long road ahead of you. I wouldn't worry too much about eating and oral aversion at the moment. Talitha has been tube fed since birth and has just had a g-tube put in so there are ways around these things. She is starting to eat now which is very exciting.

You and Murphy will be in our prayers.

Welcome! I'm so glad that you joined us! I'm so sorry that your sweet little girl is going through all these health issues. Sending lots of prayers your way!

Welcome to Downsyn, Jolie!
I'm sorry you are having to go through all this right now. But your family will be in our prayers for a speedier recovery!

I spent some time near Champaign many years ago. I was at Chanute Air Force Base ( believe it's been closed now) in Rantoul, IL

Thanks so much for the warm welcomes. My poz attitude is taking a dip at the moment. Seems like they reduced Murphy's diuril/lasix and she puffed up again.....so, they don't want to take her tube out when this is going on. Which I'm glad they aren't going to try it either....but at the same time what the flip is going on with her?! She doesn't even seem like my baby anymore...ha...more like she has become hospital collateral. Waaaahhhh ...I wish I had a pix to show, but who wants to see a poor pitiful pearl (her new nickname) all puffed up like a blowfish w/out her prickers. I do have her newborn pic (ya know...the ones they take at the hospital), but my friggin Photoshop is acting ugly and won't boot. I'm about ready to take my kung foo out on it...grrrrrr

sigh.......I need a sunny day

Hope all is well with everyone. I enjoy reading all of the threads...even though I don't have a lot to contribute at the moment. Hopefully that will change soon...