Poor Prognosis Pregnancy (fetal hydrops & down's syndrom - Page 3
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Thread: Poor Prognosis Pregnancy (fetal hydrops & down's syndrom

  1. #21
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    Julia Rose is here!
    Born 6/12/07@11:04am
    6lb 10 oz
    Just home from the hospital today (6/17/07), just in time for Father's Day!

    She is amazing!!!!



    Will post details and pictures later!

  2. #22
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    Our little miracle is here. Who would have thought we would have such a perfect outcome. We are truly blessed.

    Julia Rose arrived 6/12/07 @ 11:04 am
    6lb, 10 oz, 19 inches

    Birth Story (finally)
    At 1:30 am on 6/11/07, I awoke and thought my water broke. I called the dr. and he said to go to the hospital. When we arrived the dr. checked me and said that it was not my water breaking (what the heck was it then I'd like to know). So, they sent me home and told me to come in the next day if I still thought I was leaking fluid. The next day, sure enough I was still leaking fluid so I went in to see dr. He checked me and confirmed my water had broken. I was still not dilated at all yet though. They sent me upstairs and I was admitted into my labor and delivery room. They started pitocin at 5:30 pm on 6/11 to get my cervix to start dilating. It was a very low dose and they told me that it would be very gradually increased and I would likely not deliver until the next day, in the early afternoon. At 11:00 pm I was only 1 cm dilated. At 3:00 am I was 3 cm dilated. At this point they starting bumping up pitocin every half hour. This is when the pain really began. I couldn't take the pain anymore by 5:00 am and requested the epidural. Boy do I wish I asked for it sooner. By the time they got my iv fluids going and the anesthesiologist made it to my room it was 7:00 am. The contractions were extremely intense by this point. I was 5 cm dilated now. Talk about instant relief...WOW. Thank God for epidurals! I really give women who have completely natural childbirth ALOT of credit! By 9:00 am I was 10 cm dilated! I went from 5 to 10 Fast! As soon as I got to 10 cm I got really bad chills. I kept putting more and more blankets on myself to warm up but nothing worked. Apparently this commonly happens during the "transition" stage to pushing.
    I did some pushing at this point, but baby wasn't completely descended. So they let me "labor down" for about another half hour. They cut back on my epidural at this point so that I could feel the contractions/pain and be able to push better. So much for all of the relief I had from the epidural. It was time for hard labor again now. The pressure down below was very strong and I felt like baby was going to come out. The nurse came back in just before 10:00 am and it was time to PUSH. I never realized how difficult and completely exhausting the pushing process would be! It took me one hour of pushing to get her out, which they said is pretty good for a first time mom. Towards the end I was getting completely exhausted and I was sooo Hot. As soon as the head was "there" the dr. still hadn't arrived, so I had to resist pushing to wait for dr. He arrived just in time. Julia was born at 11:04 am. She came out screaming and kicking and punching and looked great! The dr. layed her on my belly. My first reaction was "she's so tiny" - but I felt a sensation of complete and utter relief that she was out of me and was alive and vigorous! I was officially a mommy!
    They had a neonatal team from the NICU present to examine her, due to complications during pregnancy and known T21 diagnosis. They took her over to table and a whole team of them examined her. At first, they said she was well enough to go to the regular nursery. But, after they brought her to nursery, her O2 saturation was dipping down, so they brought her to NICU to be monitored. They had to give her supplemental oxygen overnight. Her hematocrit level was high which is what caused this. They performed a partial transfusion, where they removed a small amount of blood from her belly button and replaced it with saline solution, to dilute down the blood. This corrected the hematocrit problem. Because my water had been broken for more than 24 hours, they had to give her antibiotics, in the event there was any infection (now why didn't they believe me in the first place my water had broken, this could have been avoided?). She had some jaundice too, so they had to put her on the bili bed too. She had all kinds of tests performed while she was there (echocardiogram of heart, ultrasound of the kidneys & spine, cat scan of the brain). They really did a very thorough job of making sure everything was OK. Everything was NORMAL except there was mild dilation in one of the kidneys. Since her birth we followed up on that and her kidneys are fine!! We are so happy her heart is healthy, as so often babies with T21 are born with heart defects. She did fail her hearing test in her left ear. We are having follow up hearing test next week. The dr. said 90% of babies who fail hearing test at birth pass when they are retested. We are hoping and praying this is the case. She had to stay in the NICU for 5 nights before she came home - no major problems, they just had to make sure her bilirubin, hematocrit levels were ok and she gained some weight back. I was discharged after 2 days, but the hospital had a room for parent's with babies in the NICU that we were able to stay the whole time. This was really a lifesaver!! We are so glad we decided to deliver at the hospital with a fully equipped NICU (I had debated about this earlier in the pregnancy whether to deliver at local hospital or further away, more equipped hospital). Time has really flown by since she was born, but we are at home and doing very well. She is breast feeding also!! It hasn't been easy, but I think we have gotten the hang of it now. We are already signed up with Early Intervention and it will begin next week. She is truly precious and words can't describe the happiness she is bringing to our family
    <pregnancy calendar

    Lilypie 2nd Birthday Ticker

    Julia 2

  3. #23
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    3 weeks, 4 days
    Just as everything was going go good, we took Julia for her hearing rescreen and she did not pass. When she was tested initially at the hospital, she passed the right ear, but not the left. When we took her for retest this week (at ~3 1/2 weeks of age), she did not pass in either ear. They told me not to worry myself to death, because 9 times out of 10 there is not a hearing loss, but I am having a very hard time. I have been pretty depressed the last few days over this, as this could be a devastating setback for her. I am really driving myself crazy over this. I couldn't sleep last night at all, worrying about this. It is hard to tell if she is hearing or not. A few times she appeared to react to loud sounds, but then other times she really doesn't react. She is still so young too, so it is hard to tell. She is very alert though, maintains good eye contact, can look at toys and follow them with her eyes when I move them. She is getting stronger too, can lift head when laying on my chest and hold it up. She's not crazy about tummy time yet, but if I lay her on her tummy, she can lift her head and turn from one side to the other. And she LOVES to be held. Even when she is very tired, sometimes when I put her in crib she'll start to cry, but when I pick her up and hold against my chest she falls fast asleep. I love just holding her. I just love her so much, it is so scary to think she may have some hearing loss. I don't know if it's the baby blues or what, but when I think about anything bad happening to her I just start to cry. She is such a sweetheart, I just love her!! ...hoping and praying her hearing is OK...
    <pregnancy calendar

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    Julia 2

  4. #24
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    5 weeks, 1 day
    GREAT NEWS!!!
    Julia passed her hearing exam
    We had the ABR performed and her hearing was perfectly normal in both ears. She is hearing at all ranges/frequencies in both ears. I am sooo happy about this!! I really was worried sick about this, as her life could have been completely different if she had severe hearing loss. What a relief! Once again, this amazing little girl surprises me.
    <pregnancy calendar

    Lilypie 2nd Birthday Ticker

    Julia 2

  5. #25
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    6 1/2 weeks
    Julia rolled over from tummy to back this week in both directions! She really is a strong little bugger. She's also smiling more too. I think she is going through a growth spurt now. She's cluster feeding (fed her for ~ 3 hours straight the other night), then sleeping a lot. The pedi. said this is typical to happen around 6 weeks. She is very alert and loves looking at new faces. Sometimes she will wake up once during the night, but most nights she sleeps through the night. I have to get up once a night anyway to pump. The breastfeeding is getting alot easier. It has not been easy, but I am so glad I stuck with it. Her health is still great. We have a follow up appointment with the urologist next week, then after that hopefully it will be just routine pediatrician visits.
    <pregnancy calendar

    Lilypie 2nd Birthday Ticker

    Julia 2

  6. #26
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    1 month, 3 weeks, 5 days
    The urologist confirmed that there was really no change in the kidney/bladder ultrasound from last time. There is still some dilation of the renal pelvis but it is minor. Although previous VCUG testing was negative for reflux, there could still be some, as this test has 15% false negative rate. We have to follow up with another renal ultasound in 4 months and be sure to promptly treat any infections/fever with antibiotics.
    On the renal ultrasound they detected a small cyst on her spleen, which apparently was always there (detected on u/s performed at birth as well as the last 2 u/s). I took her to see a pediatric surgeon who said he was really not concerned about it at all. He said the cyst is very small and appears "simple", meaning it would be benign. The spleen appears and feels normal, which also is another indication that everything is ok. He said there would be enlargement of the spleen if it were not benign. As long as the cyst does not grow, they will leave it alone. Dr. said to follow up with an u/s in 6 months. Other than that, Julia is doing great! She is still nursing and gaining weight nicely. She was weighed yesterday and was 9.9 pounds ( 3 pound gain since birth). We take her for her 2 month check up and vaccinations next week. I am in the process of changing pediatricians, as I just found out that the one we have now does not accept Julia's supplemental insurance. I hate transitioning doctors, as I always feel like I'm in limbo during the transition time, but hopefully all will go well and we will be happy with new pedi. I've been spending time looking at daycares - haven't found one I'm crazy about yet, but doubt that I will. I have 4 more weeks of maternity leave and am not looking forward to going back to work at all. I was thinking of trying to extend my leave, but I think it will make it more even more difficult to go back. From what I've heard, it's easier on the babies to make the transition to day care at 3 months than at 6 months too. Whether or not this is true I'm sure is quite debatable, how do they really know anyway?? Gotta go baby's waking - she is just sweeter than ever
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    Julia 2

  7. #27
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    Smile

    Julia weighed in at 10 lb 13 oz at her 2 month check up! She is growing well and getting quite chubby. She has the chubbiest cheeks and is getting a double chin too. I was starting to think maybe I'm feeding her too much (still BFing on demand), but pedi. says keep doing what I'm doing - Julia is doing great! We had her Christening yesterday. She looked absolutely beautiful in her gown. We had our family back at the house for a party afterwards. The weekend before, my family had a shower for me and Julia which was wonderful. (we didn't have one before she was born b/c her prognosis was so uncertain). Julia got tons of presents and lots of fun new toys to play with. We decided on a day care and she will start next week. It will be extremely difficult, but after a lot of debate decided it is the best thing to do. This week I'll be busy spending quality time with Julia and shopping for new clothes (still can't fit back into my pre-preg. clothes). Gotta run, baby's up
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    Julia 2

  8. #28
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    2 months 3 weeks, 4 days
    I was able to postpone returning to work one more week! So, I have 5 more days before I return and Julia will begin daycare. She will only be in daycare 3 days a week, since I will be able to work one day a week at home and will take a vacation day every Friday until Christmas. I'm so glad I saved up some of my vacation time so I can do this. I plan to continue to BF for as long as possible. Her daycare is only 10 minutes from work, so I will go over during lunch to nurse her and pump at work. She is doing well. We weighed her on our scale at home yesterday and she weighs 12lbs 4 oz! Her smile just makes my day - when she gives a really big smile her eyes smile too and it makes me the happiest mom. She's making lots of baby sounds now and has a little laugh. I can have little "conversations" with her where she'll make some sounds and I'll repeat them and she'll laugh. She's using her hands a lot more now - eating them alot, grabbing onto her clothes, my clothes etc. She gets stronger every day. We're still doing OT once a week with Early Intervention. This week we will be starting with a different OT. I spoke with her on the phone and I have a good feeling about this one. She is very enthusiatic about working with Julia and absolutely loves children with Down's Syndrome. I'm really looking forward to meeting her.
    Last edited by r4444444; 09-06-2007 at 07:54 AM. Reason: corrected Julia's age

  9. #29
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    2 months, 4 weeks

    Julia will start daycare on Tuesday and I'm starting to breakdown over it. Am I doing the right thing, I don't want her to get sick.....etc... I have been pretty ok with it up until now. It is starting to hit me. I know I will be a complete mess when I drop her off. I really don't know how I'm going to walk into work after dropping her off- I"m sure I'll be crying the whole morning. I looked at several daycares before choosing the one she is going to and feel good about where she is going, but still...DH and I could survive fine if I didn't work, but we are trying to save to buy a bigger house in a better school district and this will be tough to do without me working too. I have a very good job and they are flexible and will let me work one day from home. I know I want Julia to go to daycare to get the social interaction with the other kids- I think it will be good for her to socialize with "typical" kids right from the start, as she will learn from them, but how much interaction is she really going to get at 3 months of age anyway?? I'm wishing I waited until she was more like at least 6 months. I'm sure every mom goes through the same thing - I didn't realize until now how upsetting it will be. I remember when I was pregnant with Julia and didn't think she was going to make it, a girl at work was returning to work and leaving her 6 wk old baby with her mom. She was upset and I remember thinking, how can she possibly be upset - she should be thankful she has him - at least she HAS him - I wished at that time I could have her problem. Now that the time is here to leave Julia, I'm realizing how hard it really is. I"m trying to just focus on the positive and remind myself what a miracle it is to have her here alive with me in my life, but it still is really difficult to leave her.

  10. #30
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    3 months, 2 days
    Well, I handled the first day better than I thought I would. I only cried at the daycare while I was dropping her off and on the way to work after. Once I got to work I was ok. The next 2 days I just cried a little on the way to work. Good advice about not putting on the eye makeup beforehand. I went at lunchtime to nurse her each day too which helped alot. Overall I am not really impressed with the DC and am considering taking her out and not working. She's the youngest one there and she basically just sits in the bouncey seat or swing all day. I asked them to please do tummy time with her and get her down on the floor to play when the bigger kids are sleeping. But, it seems those opportunities are few and far between. The room is age ranged 6 wks to 13 months, but most of the kids are older than 6 months, so they are much bigger and crawling/standing. After the 2nd day, I was ready to pull her out. The staff really wasn't all that friendly to me either. On her third day I spoke with them for a little while and felt better about the situation, but I still might stop working. I'm really torn. I want her to be mixed in with typical kids right from the start, b/c I think she will learn from them, but I don't think she is going to get the stimulation that she needs at this point in her life. I'm so happy I have all of today and the weekend to spend with her. I can't wait until she wakes up!

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