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Thread: Poor Prognosis Pregnancy (fetal hydrops & down's syndrom

  1. #31
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    3 months, 6 days
    Well, I made the decision to take Julia out of daycare and stay at home.
    It was a very difficult decision and we went back and forth with it for the past week. I didn't care for the daycare she was in and don't think she would be getting the stimulation or nurturing that she needs at this point. I will probably consider putting her back in when she gets a little older. But I won't send her back to the place she went to now.
    There were many reasons I didn't like it; they weren't very friendly, she got no stimulation, it seemed they rarely held her - she was always in the swing, I think they were not being honest with the diaper changing (there were 10 diapers in her bin when I picked up her stuff and I gave them 15 - this means they only changed her diaper a total of 5 times in 3 days? On their daily log, they claimed to change it 3-4 times a day, She already has a cold and had a fever last night of 101, they didn't feed her enough..). Aside from not caring for this particular daycare,this time is irreplaceable with her and I think I can provide her with more nurturing, one on one interaction and stimulation than she will get at daycare at this age. Also, it is not worth the risk of her getting infections at this point. Most kids can get over infections no problem, but for her,since she has Down Syndrome, infections can have more detrimental effects (ie hearing loss due to ear infections, fluid etc., which could then cause speech problems.....) If she is sick all the time this will only hinder her development more too. Anyway..... this is what we decided is best for our family at this point in time. I'm really excited about it and am looking forward to all of the precious time I will have with my little girl!
    <pregnancy calendar

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  2. #32
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    3 months, 2 weeks
    My last day at work was last week. They were very understanding about everything and said the door is always open when I am ready to return. I am so happy to be home with Julia.
    She is still a little congested from her cold, but she seems to be herself again. She really cried alot when she was sick, which was hard, because she usually doesn't cry much at all.
    She's "talking" so much now. She makes all different kinds of sounds, her favorite being "agooo". I think she will be a good talker when she grows up. She seems to really want to talk already. I'm doing lots of tummy time with her every day. She seems to like it on her tummy now. When she was just 6 weeks, she could roll from tummy to back, mostly b/c she didn't like being on her tummy. Now she likes it on her tummy more and isn't really rolling much. She just gets cuter and cuter every day. She's getting quite chunky. DH calls her the Michelin baby b/c of the rolls on her arms and legs. I call her my little chunky monkey. She still hasn't had any formula yet - just breastmilk. People are starting to ask me what I'm putting in my milk! The pedi. still says her weight gain is great and don't worry about it since she's a BF baby. When we took her last week for sick visit she was 13.0 pounds. (she nearly doubled her birthweight!) Today is my 35th bday - hard to believe. I really don't feel 35. Monday was DH and mine 2 yr wedding anniversary too. We went out to dinner and took Julia. This was the first time we took her out to a restaurant. We went to the same restaurant we had our wedding rehearsal dinner. Julia did great. She was awake the whole time, just looking around at everything. She started to get fussy towards the end, and we got out of there just in time.
    Last edited by r4444444; 09-26-2007 at 03:43 PM. Reason: add a few things

  3. #33
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    3 months, 4 weeks
    We weighed Julia on our home scale yesterday and she was 14 pounds, 5 ounces. My goodness, she is getting heavy! We go next week for her 4 month check-up. We're seeing a new pediatrician, b/c the one she has been seeing doesn't accept her secondary insurance. The practice we are going to is supposed to be very good and is highly recommended by some other moms that I know who have kids with Down Syndrome. Julia does not want to take a bottle at all now. We are trying to give her one bottle of expressed breast-milk a day, so that DH can feed her once in the evenings when he comes home, and if we need a sitter some time she'll be ok with bottles. She is flat out refusing the bottle now, and we feel bad trying to "force" it on her so we're trying not to push it too much. She's still BFing very well, although she has been a little fussy at the breast lately - pulling away, then nursing, then pulling away... I'm not sure if it's reflux, or maybe a little congestion causing this - I'll follow up with doc. at her appt. next week. I know she's certainly still getting enough based on her weight gain though. We took these pictures this past weekend and I just love them!



  4. #34
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    Julia had her 4 month well-baby check up this week. She weighed in at 14 pounds, 7 ounces and 22 inches long. This puts her in the 95% for weight and 50% for height (based on the Down Syndrome growth chart - they have a different growth chart for kids with DS, since their growth rates are different/slower and they seem to fall off the typical kids growth chart). Her new pedi. said she is doing great and she was very impressed by her muscle tone and neck control. She thinks once she gets more mobile with crawling etc. her weight and height should even out. I liked the new pedi. but wasn't overly impressed. There were some things that I had to bring to her attention, that I thought she should have been bringing to my attention (like the fact that kids with DS need to have their vision checked at 6 months, and a few other things). I was surprised by this as she seemed to be so highly recommended. There are a few dr.s at the practice, so I may take her to one of the other ones for her 6 month checkup. We're going to hold off on solids until 6 months, since her weight gain is so good on breastmilk alone. Gotta run...babies up...will post more later.
    Rose

  5. #35
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    4 months, 4 weeks, 1 day
    Julia has been doing well - believe it or not we will be doing her 6 month review with her early intervention team in 2 weeks. She is still only receiving OT once a week - I tried to get them to add PT when she was ~ 3 months, but they wouldn't add it b/c she was doing so well and said they couldn't justify it. Well, now her OT tells me yesterday that she is slightly behind on her gross motor skills, which kind of ticks me off, b/c maybe she wouldn't be if they had added the PT when I asked. Anyway, I'm going to really push for more therapies now and am not going to take no for an answer. I really think she is doing just fine for her age - but if they want to say she isn't that's just fine, as it will be justification for more therapy. It really kinda made me sad to hear it though, as I really do a lot with her and follow what all the therapists/books suggests to help her along with her development. I know she will fall behind at some point but wasn't expecting to hear it so soon. Anyway on a positive note, Julia was a penguin for Halloween and was just the cutest little penguin ever. I'm enjoying every day that I have with her -she is just a dream and the best thing that ever happened to me.

  6. #36
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    5 months, 1 week & 5 days
    Wow, I haven't updated this in a while. Things are going well - We had her 6 month evaluation for early intervention this week. It went very well! She is a little behind in her gross motor skills (mostly b/c she isn't rolling over consistently), but for the most part she is doing just great! I am so happy that they will be adding both speech and physical therapy
    (in addition to OT). I was really worked up over this, thinking it was going to be a battle to get the therapies that we wanted, but it was a lot easier than I thought. I really can't believe they are giving her a speech therapist already - that's almost unheard of where I live - usually people have to really push to get it by a year - 16 months of age. There really is alot they can do before the child utters their first few words, so I'm so happy to have this. PT and OT will be weekly, and speech with be every other week. PT will concentrate on her gross motor skills, OT will focus on fine motor and play skills/cognitive development, and speech will work on feeding and oral motor development. We will be starting Julia on solids when she turns 6 months - it's so hard to believe we are already almost there! We have an appt. scheduled at the Down Syndrome Center in December to have her evaluated by a developmental pediatrician. They will do a full medical exam and developmental eval. I visited there a few weeks ago and met with one of the directors. She was extremely helpful and actually helped us to get the additional therapies. Her recommendation was to add a PT now, and have a speech therapist begin by 9 months. I'm looking forward to her evaluation in December - we were lucky also to get the appt. so soon. The waiting list now is about 10 months, but there was a cancellation, so we are getting in early. We took Julia to the urologist to follow up on the mild hydronephrosis that she has had since birth, and it appears as it is almost completely resolved by itself. We will follow up in 6 months, but the dr. expects it to be completely resolved by then. So, all in all, things are going very well! She keeps me very busy - still sleeps through the night (about 10 hrs), but she is up most of the day (just cat - naps mostly). I'm still so happy to be home with her - don't think I'll be going back to work anytime soon

  7. #37
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    Default My precious miracle

    I decided to rename my journal since the topic is no longer "poor prognosis pregnancy - fetal hydrops and down syndrome". I was going to start a new journal, but I wanted to keep all of the info. together. I thought "My precious miracle" would be the best name, since that is what I truly consider my daughter to be. Here are a few pictures of Julia in her Christmas dress.


  8. #38
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    8 months, 3 weeks,
    It has been so long since I updated this!!!... I have been keeping so busy, that any time I log on, I just don't have the time to write everything I'd like to, so I end up not writing anything. So... Just to give a quick update - things are going very well. I have Jullia in 4 different playgroups - one group with kids just with DS, another all typical kids, another at our local Y with all different kids 0-3 who are in the early intervention program, and one at our local Variety Club. I'm meeting lots of moms and learning so much and Julia is getting exposure to all kinds of people/settings. She seems to really enjoy being around other people and is quite the observer. We also go to storytime at the library which she also likes. Also have been bringing her to the pool. She loves the water. I'm signed up for a mommy/me swim class starting later this month. Therapies are going well. She's still getting PT and OT weekly and speech every other week. We had some issues with our original ST, so we have a new one now. Julia's sitting up very nicely on her own and playing with toys. No crawling yet and it doesn't look like she's going to anytime soon, but it's OK. She's getting plenty of exercise and activity/therapy and it will happen when its time. For now she's content with rolling around and sitting/playing. She still sleeps like a champ, but doesn't nap much during the day. She's eating much more solids now (3x a day) and still nursing. We're working on transitioning her to a cup now. She loves to drink out of the cup, but still needs assistance. Gotta run... she's awake now....
    <pregnancy calendar

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