Community› The Bump Month Clubs› May 2013 Moms
May 2013 Moms
New Discussion

Being transferred to CHOP-Priscilla update

vpr105vpr105
in May 2013 Moms

Priscilla has come a long way in the last 10 weeks (I cannot believe it has been that long! It feels like it went fast and has been the longest 10 weeks of my life all at the same time). She is off her oxygen, weighs 6lb 10oz, has been moved to a regular crib and is tolerating her feeds over 15 minutes. They have started incorporating breast milk back into her diet and so far no bloody poops. She is awake so much more now and it's so fun just being with her. However, she is not progressing in terms of eating. They have finally let me start breast feeding once a day and then bottle feed her once a day. She does better on the breast, but with both breast and bottle she coughs and chokes when she gets a big mouthful. She is now 39 weeks gestationally and she should be able to coordinate suck,swallow and breathe by now. So sometime this week she will be transferred to the feeding and swallowing center in children's hospital. It is kind of a step-down unit for NICU grads with feeding issues. There they will put a scope down to make sure there is nothing preventing her from swallowing then its a pretty intensive program with a whole integrative team. I am devastated. Especially considering I thought she would be home by now and we have at least a few more weeks in a hospital. I am at the end of my rope and am just trying to do whatever it takes to get Cilla home as soon as possible.

Thanks for all your support! I hope everyone is making it through their last few days/weeks of pregnancy!

 Here's a recent pic of my little sweetie

image 

TTC since 10/1/10 BFP 1/14/11 MC @ 6w 3d 1/17/11 2 Rounds Clomid 50mg + ovidrel trigger=BFN SA=Normal HSG= tubes clear July 2012 gonal-f and +ovidrel trigger + IUI= BFN August 2012 gonal-f + ovidrel trigger + IUI= BFP!! Beta 8/24 12dpo 166!! Beta#2 8/28 16dpo 942!!! EDD 5/4/13 9/10-First US-TWINS!! 2 beautiful little HB's, 1/3/13 said good-bye to our little boy. Lilypie Angel and Memorial tickers image Baby Birthday Ticker Ticker
Report Reply to Post
«1

Re: Being transferred to CHOP-Priscilla update

  • jedimindtrickjedimindtrick member
    Glad to hear she has grown so much and is progressing. Continued T and P for her to improve with the eating. Such a cutie.
    BabyFruit Ticker Lilypie First Birthday tickers Image and video hosting by TinyPic
    Report Reply
  • Loading the player...
  • botanicalblissbotanicalbliss member
    What a little sweetheart!  Hang in there - it must be so tough to not have your baby home yet, but she's doing so well!  Hopefully, she won't have to stay too long in the feeding unit and can come home soon.
    Report Reply
  • jedimindtrickjedimindtrick member
    Didn't realize she was at CHOP. It is a wonderful hospital
    BabyFruit Ticker Lilypie First Birthday tickers Image and video hosting by TinyPic
    Report Reply
  • mommy0411mommy0411 member
    She is so beautiful! ((Hugs)) to you! I hope the feeding clinic goes well and that she is home with you soon!


    DS1: 4/15/2011
    Dx: ASD, SPD and receptive and expressive speech delay at 21 months
    BFP #2: CP 5/2012
    DS2: 4/24/2013
    BFP #4: Miscarriage at 5 weeks 7/2014
    BFP #5: 8/8/2014 Due 4/20/2015 
    Its a healthy girl!!!!! 
    Lilypie Pregnancy tickers
    Report Reply
  • mrsthomas3311mrsthomas3311 member
    Hoping she continues to progress and be in your arms at home soon! She's so cute!
    Warning No formatter is installed for the format bbhtml
    Report Reply
  • LaineyPaneyLaineyPaney member
    I can imagine that this is disappointing. At the same time, if you guys get to the step down unit that specializes in feeding issues, you guys are going to be soooo well supported and hopefully it won't take any time at all to get those feeding issues resolved!

    Best of luck!!!!
    image wedding countdown
    Report Reply
  • CNJ4EVACNJ4EVA member
    Glad she's doing better!
    CafeMom TickersCafeMom Tickers CafeMom Tickers
    O14 January Signature Challenge: Snow Fails
    Image and video hosting by TinyPic
    Report Reply
  • ScottsdaleMamaScottsdaleMama member
    I'll continue to send prayers for your little Priscilla.



    **BFP 6/2/2015
    Toddler Boy 5/24/2013
    Report Reply
  • Rachel GoldsteinRachel Goldstein member
    Huge hugs. I thought I wasn't going to survive the two weeks we spent so my absolute support for the strength you have shown these last 10 weeks. I'm glad she is putting on weight though! Every little bit helps. I'm also really happy you're getting to practice bf. that must be very very exciting. A chance to finally feel connected is amazing.

    Continued TPs she improves her eating without much intervention.

    :::more hugs!:::
    TTC since 3/4/2010
    Me: PCOS, DH: normal
    Started seeing RE 11/10/2011
    8/31/2012 = BFP!!
    First Ultrasound... TRIPLETS! EDD 5/11/13
    Baby w/ no HB @ 10w4d - We love you angel baby.
    Baby A & B doing great. A/S 12/10/12 - Healthy BOYS!
    Sawyer & Silas born at 33+6 on 3/29/13
    imageimage
    imageView Raw Image" height="250" width="375">

    image"Lilypie">image


    Report Reply
  • megpegmegpeg member
    My little sister was born at 28 weeks and is now 19 years old- she still cannot drink without gulping for air afterward. Priscilla is a doll hope things continue to get better!
    Lilypie Kids Birthday tickers

    <a href="https://lilypie.com/"><img src="https://lbym.lilypie.com/OcL3m4.png" width="200" height="80" border="0" alt="Lilypie Kids Birthday tickers" /></a>
    Report Reply
  • ALP514ALP514 member
    Sending lots of thoughts and prayers for you and baby Priscilla!!


    Lilypie Second Birthday tickers

    Report Reply
  • MitoRachelMitoRachel member
    I was just thinking about the two of you. Of course it is hard to STILL be in the hospital. You will get through this. I too have heard wonderful things about CHOPS including from people who had their kids there partially for feeding issues. Hopefully the team will be able to help Priscilla gain the skills she needs to eat faster than anticipated. Hang in there!
    Married to E on June 5, 2010
    Gave birth to baby boy, I, on March 25, 2012
    Gave birth to baby girl, A, on May 20, 2013
    Baby #3 due April 29, 2015

    Recovering from mitochondrial dysfunction and Addison's/possibly very severe adrenal burn out using food, medicine, and a large amount of garden therapy.
    Report Reply
  • MotherMayEyeMotherMayEye member
    She's so precious! Continued thoughts her way that she keeps improving.
    Report Reply
  • nykkybabynykkybaby member
    So many good wishes coming your way. You are both troopers... so close! And she is a doll.

    bfp #1 10/15/2009 m/c 11/4/09 10 weeks Lily you are not forgotten
    bfp #2 4/5/2010 CP, m/c 4/12/10 5 weeks Baby Lo
    Diagnosed PCOS 10/10 RX 1500 mg Metformin/day
    bfp#3 4/5/2011 Missed m/c discovered 5/24/2011 (10w 5d) baby Asher stopped growing at 6 weeks
    I know he is playing with his siblings in heaven right now...

    rx'd factor II gene mutation 7/11 prescribed 5000 units Heparin daily
    rx'd Sjogren's Disease 8/11

    bfp #4 9-6-2012 RAINBOW Baby Ky born 5-9-13
    bfp #5 8-26-14  RAINBOW #2 Due 5-8-2015
    image




    baby development
    Report Reply
  • SimplyMe111SimplyMe111
    Wishing you the best, she deserves every little thought and prayer coming her way. Good luck.
    Report Reply
  • TheyCalledHerKateTheyCalledHerKate member
    Sending you good thoughts, stay strong. She is too cute!
    Report Reply
  • BeesMomma00BeesMomma00 member
    Congrats. CHOP is amazing.
    Report Reply
  • BekW2009BekW2009 member
    I was thinking about the two of you last night and was going to ask for an update. I'm sad to hear she won't be home as soon as you'd hoped! I hope the feeding program is exactly what she needs to get home soon though!

    Please keep us updated! Thoughts and prayers she comes home soon!
    image
    Report Reply
  • cdnbird11cdnbird11 member

    What a sweetheart. I'm glad to hear she's growing and progressing. Being off of oxygen and in a normal crib is a big deal!

    I hope the feeding team is able to figure out how to help her coordinate better!

    First M/C - March 2006, pregnancy not known about.
    BFP#1 03/17/12 DD 11/09/12 Missed MC 05/14/12 (No growth past 9wk1d) D&C 05/22/12
    Removal of Ovarian Cyst 07/27/12
    BFP#2 09/17/12 DD 05/29/13 STICK BABY STICK!

    PgAL MARCH SIGGY CHALLENGE: PET SHAMING

    imageBabyFetus Ticker Lilypie Angel and Memorial tickers
    Report Reply
  • snowgirl427snowgirl427 member
    Thanks for the update! Continuing TnPs for your little one!

     Baby Birthday Ticker Ticker
    TTC #2:
    March - May 2014 - Natural cycles - no luck
    June 2014 - Clomid 50mg - BFN
    July 2014 - Clomid 50mg - BFN
    August 2014 - Clomid 50mg - BFN
    September 2014 - Clomid 50mg - Fingers crossed...

    Report Reply
  • GoMaltby18GoMaltby18 member
    Aw she's so cute!  Hope she keeps feeding well!
    Warning No formatter is installed for the format bbhtml
    Report Reply
  • tuffytifftuffytiff
    Thanks for the update, I have been wondering how you and your princess are doing! I can't believe 10w has gone by! I do hope you get to take her home soon. It sounds like she's getting top notch treatment, I'll continue to keep you in my thoughts and prayers. Btw she is just adorable!!!!!
    Warning No formatter is installed for the format bbhtml
    Report Reply
  • pnutgpnutg member
    Praying for her continued strength and progress!
    Baby Birthday Ticker Ticker


    BabyFruit Ticker
    Report Reply
  • HimandMeplus3HimandMeplus3 member
    Big hugs to you both! She's come so far, and hopefully this next step will be just a blink in time for you. Many thoughts and prayers for you and your little sweetheart that she gets to come home soon!
    Baby Birthday Ticker Ticker








    Report Reply
  • daniellelea1985daniellelea1985 member
    Sending T&Ps your way for sweet Priscilla. Keep us updated
    <leader of the pack small photo leaderofthepacksmall_zps19d110a4.jpg photo r0614p_zpsojhlssmw.gif AlternaTickers - Cool, free Web tickers

    BabyFetus Ticker
    Report Reply
  • Brooky11209Brooky11209 member

    Oh she is just perfect! Such a cutie! Upload more pics when you get the chance.

    just remember take it one day at a time. T&p that she will be keep progressing and go home soon!

     

    my little guy had to have a tube in his nose too it killed me:/ 

    IAmPregnant Ticker image
    Report Reply
  • KLJ3KLJ3 member
    Good luck and I hope your little girl can come home soon!

    Baby Birthday Ticker Ticker

    Image and video hosting by TinyPicImage and video hosting by TinyPic Image and video hosting by TinyPic

    Report Reply
  • hogrefeahogrefea member
    Big ((HUGS)) and prayers she kicks this feeding issues behind in a hurry!  GL! 
    Warning No formatter is installed for the format bbhtml
    Report Reply
  • sugarplum513sugarplum513 member
    She gets cuter everyday! I will keep her in my T&Ps. Hang in there momma, you can do it.
    Warning No formatter is installed for the format bbhtml
    Report Reply
  • rebaannrebaann member
    I've heard nothing but great things about CHOP and I'm sure they will take great care of her.  I hope her stay there is short and that she'll come home soon.
    My Life in D.C.
    The Daily Nugget

    photo beachwave_zps17d3b89a.jpg
    Cycle 12, IUI #1 - 33m post wash 10/15/10 = BFN
    Cycle 13, IUI #2 - 15m post wash 11/16/10 = BFP, missed m/c, D&C 1/3/11
    Cycle 15 - 18, IUI #3-6 = BFN
    Cycle 20, IUI #7 = BFP!, missed m/c 9/14, D&C
    DE-IVF Aug. 2012: ER 8/30 11R, 7M, 4F; ET 9/4 returned 2
    Beta 9/18 #1-820, #2-1699, #3-7124
    10/1 1st u/s measuring right on track, 125 bpm

    Baby Birthday Ticker Ticker
    Report Reply
  • PHughes819PHughes819 member
    As everyone else on this board from the Philly area will tell you CHOP is an amazing hospital and we are very lucky to live in this area to have 2 amazing children's hospitals near by.  (AI DuPont being the other)  Lots of happy t&p!  
    Follow Me on Pinterest IAmPregnant Ticker
    Report Reply
  • gogadgetgogogadgetgo member
    She's gorgeous! I hope she gets the help she needs at chop and gets to come home soon. Hugs!!
    Baby Birthday Ticker Ticker


    image


    View Full Size Image

    Report Reply
  • Sydney0130Sydney0130 member
    She really is so precious! Continued positive thoughts to you guys
    Warning No formatter is installed for the format bbhtml
    Report Reply
  • Boo0512Boo0512 member

    Sorry you are going through this difficult time, I hope you are able to bring her home very soon.

    Prayers to your family! She sure is a cutie Smile

    Report Reply
  • motangmotang member
    I'm happy to hear she is growing and doing well. I hope she makes the advances she needs with feeding so you can bring her home soon.
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker Pregnancy Ticker
    Report Reply
  • surpriseadditionsurpriseaddition member
    Thanks for the update.  I'm so glad to hear she's improving still, even though it's not as fast as you'd like.


    **DD1 - 7/9/98**

    **DS - 11/9/00**

    **DD2 - 4/30/13**

    Report Reply
  • LolalipsyLolalipsy member
    Bless her. So glad to hear she is doing well. Hopefully once her feeding issues are sorted you can take your little cherub home. 



    Pregnancy Ticker
    Report Reply
  • caden1206caden1206 member
    I am so sorry to hear she is a taking a bit to learn to feed. I am pretty Impressed they have a program like you described to help her. Prayers it works and you can take your sweet one home. She is definitely adorable. Good luck, mama.
    Report Reply
  • vic1011vic1011 member
    Good luck, hope they figure out what's going on with her soon!
    Baby Birthday Ticker Ticker
    Report Reply
  • LN1024LN1024 member
    Priscilla is so beautiful! I know it must be hard to be at hospitals, especially when you thought you'd be home by now, but think of all the progress she has made in 10 weeks! You're both doing great!
    image


    Lilypie First Birthday tickers 

    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"