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Tracy,
The twins sound like they are on target. You still have to adjust their age a month and a half off of their progress, so between six and eight months, kids start to skooch and rock and crawl. Grace sounds like your daredevil, and Charlotte may just decide that this crawling thing is not for her. Straight to walking.
Make sure the chests of drawers in their room are safely attached to the wall. My nephew, Ryan, decided to pull up on an open drawer and sent the thing over. Luckily his mother was folding clothes on top of the dresser and caught it. Ryan is my tester. I knew something wasn't safe when he was over... because he got into EVERYTHING.
I firmly suggest doing the Infant Follow Up Clinic, it is only once every 6 months. Julia is a part of that. I have never seen another family while there, and during the RSV season, you can request to wait in one of the offices. MaryAnne Cote should be able to help you, just tell her that your girls have compromised immune systems. Julia has been doing it for over a year. AND the OT that SEMC has is actually from EI, she now works in the NICU, but she spent years in the EI system.
Yes, Caritas Norwood should have referred you into an EI program. Lacking that transition, your pediatrician can and should have made sure you were at least evaluated by the time the twins were 6 months old. It isn't too late to do it at all, you can be referred into the program until the twins are 2 1/2. EI ends at age 3.
Their nutrionist is fabulous, too. She helped us, when our own pediatrician at the time wouldn't. Julia was very low weight, at 14 months when we first went to the infant follow up clinic. She had transferred from formula to whole milk a couple of months before, and she was refusing to eat, and refusing to drink the milk. She was 13 lbs 12 oz at a year old, her pediatrician kept saying that is just kids with CP, skinny and tall. We were really worried, and she kept having wet burps. Well, the nutritionist, and Dr. Pye, said that Julia had classic GERD, and that she needed to REALLY bulk up her calories. But it was hurting her to eat. They couldn't prescribe the medicine for GERD, but they advised us to seek an alternate opinion, and told us what to ask for. They also gave us PediaSure, and Julia started to take that instead of milk. We did get a second opinion, AND a new doctor. Jules is still really thin, but in the 18 months since we started the clinic, she has put on great weight. She went from not even making it on the growth charts for weight to the 10th %-tile, just this last week.
I feel so inadequate as a first time mom sometimes, even now. And with this whole preemie thing, it makes it twice as bad, because there are no Baby books that cover this. People will tell you to "relax... your babies are no different than any other child". "Children get colds but it doesn't hurt them." Bull ticky... you have two miracles let yourself treat them that way. At least until they start pitching temper tantrums at the local grocery store! (FYI, this happens at about 2 1/2) ;-)
Yes, RSV shots are from October to April. The full flu/cold season. This year might be from November to April as October has been so mild. You have the perfect argument already. It is the same one that I used when I got my TAC, the cost of the TAC, $6K, the cost of a 70 day NICU stay, for the bed only, $375K, you take your pick! Ya know, it worked.
Have you joined the Mother of Twins Group yet? It is a fabulous organization that offers great support. I have three friends with Twins and they each say that it is great. Plus, one night a month, you go out without the kids. That is VERY important.
Sorry this is so long. But I remember when Julia was little, I really felt I had no one who understood what we were going through. Through the years I have gotten more support, and gained more second hand knowledge from other preemie moms. It is my hope that we can pass on our experiences to others.
Have a good day!
Lisa
----- Original Message -----From: Tracy A. BessetteSent: Friday, October 21, 2005 9:15 PMSubject: RE: [Parents_As_Partners] New Member Rired. ~ Tracy BessetteAre parents generally referred to an EI program upon discharge from the hospital? These are my first 2 babies and I had no idea what EI was until I researched it on my own. I also belong to a twins group and they told me that they were put in touch with the EI program through the NICU before they were sent home. I feel as if we "fell through the cracks" because my babies were born at SEMC and spent time in the NICU (Level 3 nursery) but were then transferred to a hospital closer to home (Level 2 nursery) and therefore were not put in contact with an EI program?Charlotte is rocking back and forth on all fours, taking a few "crawls" forward, but mostly backwards and pulling up on me and her playgym. Grace is a more advanced crawler. Just this week she went from going backwards to full-on forward crawling. I am thinking about taking them to the clinic offered at the reunion to have them evaluated by an Occupational Therapist, but would really rather have someone come to my home, especially with RSC/cold and flu season around the corner. How would I go about getting insurance to cover visits?As for the Synagis last winter...in her defense, my pedi advised us that we were right on the border line for the end of RSV season (considered Feb); however, we did not know that RSV would extend into April...and being new parentsn still so stupified by the whirlwind of their early arrival didn't know any better...hopefully the insurance company will "see the light" and okay our request,,,$1800 a shot (14K total a winter for twins) seems like a bargain compared to the bill for hospitalization (total of 13 days) at Boston Children's Hospital...you'd think they'd do the math! IT IS SO FRUSTRATING!!!!!!!!!-----Original Message-----
From: Parents_As_Partners@yahoogroups.com [mailto:Parents_As_Partners@yahoogroups.com]On Behalf Of Lisa Richards
Sent: Friday, October 21, 2005 12:08 PM
To: Parents_As_Partners@yahoogroups.com
Subject: Re: [Parents_As_Partners] New Member Rired. ~ Tracy BessetteWell Tracy,Thanks for joining the group. I can give you my pediatrician's information, but he is in Weston. He works with a couple of Preemies, Julia included. But he is very well-versed in what needs to be done differently with them.I am so sorry about the RSV. Any baby born prior to 35 weeks, who has had any heart or breathing complication is eligible for the RSV shots. Your Pedi needs to send a letter of necessity to the company that makes the shots and they will send you a letter and questionnaire to fill out. The reason that most insurance companies are hesitant (ok make a major stink about it) is that the Synagis shots are about $1,800 a month.I had them for Julia. I insisted on it. I can't believe that your doctor suggested that you NOT get them.I had Julia in the winter time too, she came home January 16, 2003. You start to feel closeted in pretty quickly. I know how isolated I felt with just one little girl, I can't imagine how you feel with 2!A lot of preemies face challenges, but for various lengths of time. Most kids will eventually catch up to their peers. Julia has more challenges than most as she has PVL and Cerebral Palsy. If you ever need help wading through the mire of EI, let me know, I am a PRO. Julia is graduating from the EI program here in Framingham and moving on to pre-school. It took us a long time to figure out how to navigate the system to get the services that were necessary, and what services the doctors at Children's would LIKE her to have. It is sort of a little war that Children's and EI are waging and we parents are the grunts.I couldn't believe how quick Julia turned one! Then two! Now Three! The time with her just flew by, looking back. But when you are in the moment, it seems like it crawls.Are the girls pushing up on their hands in tummy time? I remember 8 months as the start of it being fun to have a child. Julia started laughing and giggling and became the social butterfly she is today.I am really glad you joined the group, even though we are in our early stages. I have contacted one of the members that I know who has preemie b/g twins who are now 4, Karen Ghilani. She will be joining in soon to give you the Twinkers side of the life.LisaJulia Elizabeth ----- Original Message -----From: Tracy A. BessetteSent: Friday, October 21, 2005 10:15 AMSubject: RE: [Parents_As_Partners] New Member Rired. ~ Tracy BessetteHi everyone!
My twins, Charlotte & Grace, were born at 32 weeks on 2/1/05 at St. Elizabeth's
Hospital in Boston. It all happened so fast...my pregnancy was
considered high-risk because I was carrying twins and I went for
monthly ultrasounds and frequent OB visits. All was okay until
January 28th (Friday)...a regularly scheduled OB visit and they
discovered protein in my urine. I had to collect my urine for 24
hours (at my baby shower too!) and bring it to the hospital that
Sunday (1-30) with a follow-up in L&D on Monday (1-31) morning...well,
my protein count was 5 times the normal level...diagnosis was PIH -
pregnancy induced hypertension -- therefore, a c-section was planned
for me to deliver that week at 32 weeks -- ambulance ride to the
hospital and everything -- we were so not prepared for what followed.
Charlotte was born 3 lbs. 11 oz, and Grace was 3 lbs. 9 oz on Tuesday,
2-1-05. The NICU scared the life out of me! It's a whole different
world full of sounds and sights most people never experience...I
remember the first time I saw them...I just cried my eyes out for
hours not wanting to leave their sides. I can not describe in words
how it feels to leave the hospital without your babies...
They needed feeding tubes for a couple of days, while they learned the
suck, swallow, and breathe technique. They also needed help with
their lungs and were very jaundice. They required C-PAP and nasal canulaand more intensive supervision. Both had heart murmurs...they went through
testing, X-rays,etc., and the doctors finally told us it was nothing
to worry about...they spent 9 days in the SEMC NICU and on 2/9/05were transferred to Caritas Norwood Hospital to be closer to homeand were discharged on 2/25 (too soon in my opinion, but not in the casemanager's opinion, obviously).
Then we just went through the worst winter/spring...Grace and Charlotte ended
up being hospitalized at Children's Hospital in Boston with RSV (our
pediatrician advised against the vaccination for RSV). Grace had to be
taken from the house by ambulance on 3/25 because she stopped
breathing!!!!!!!! I spent Easter (3/27,also my b-day) in the hospital and
stayed there the next 11 days...it was the most HORRIBLE 11 days of my
life...NO ONE should have to see their child get a feeding tube
inserted...it was just torture seeing her so sick and on oxygen with
tubes and everything. So I stayed with Grace while Daddy took care of
Charlotte at home and on 4/4 Grace was discharged from the hospital
and Charlotte was admitted!!!!!! Ughh...luckily Charlotte wasn't as
sick as Grace and came home a few days later. We are all home now
together and I can hardly believe the are now 8.5 months old!!!!!! WOW!!
WHAT A ROLLERCOASTER RIDE!!!!!!!! We spent April just crossing our
fingers that they would stay healthy...and they did...KNOCK ON WOOD! My pedihas petitioned the insurance company for Synergis therapy this winter and weare anxiously awaiting a response. They just got the 1st 1/2 of their flu shotsyesterday and go back for the 2nd 1/2 next month...and hopefully Synergis too (pleasesay a prayer for us!)
These are my first babies and twins is overwhelming enough nevermind
having to learn the "preemie language" with terms such as Early
Intervention for Speech and Gross Motor, etc. -- do all preemies face
such challenges? How does the adjusted or corrected age work? My
questions seem endless...we were not enrolled in an EI program but picked upsome information at the reunion on it. It is all so confusing.
Our pediatrician was my doctor when I was growing up but I sometimes
wonder if she can relate to the challenges of preemies. Are there
pediatricians out there that specialize in preemie care? Any and all
info is greatly appreciated. THANK YOU! :o)
Sincerely,
Tracy A. Bessette
-----Original Message-----
From: Parents_As_Partners@yahoogroups.com [mailto:Parents_As_Partners@yahoogroups.com]On Behalf Of Lisa Richards
Sent: Friday, October 21, 2005 7:03 AM
To: Parents_As_Partners@yahoogroups.com
Subject: Re: [Parents_As_Partners] New Member Rired.Hi,Welcome to the group. We are still in our maiden voyage here... but more parents will be joining soon from the NICU Reunion.I have had two children at SEMC. My daughter Julia was born just before 28 weeks, and spent 70 days in the NICU. What a rollercoaster ride, but with a happy ending. Julia is now 2 weeks away from being 3 and she is a wonderful little kid.Please tell us about Charlotte and Grace. How long were they in the NICU? How are you doing now that they are home? How is Early Intervention going?LisaSAHM to Julia (11/5/02 27 5/7 wks, Now 35 months!)
& angel Mary Patricia (22 4/7 wks, lived 2 hours)
TAC placed 1/21/05 TTCJulia Elizabeth ----- Original Message -----From: Lisa RichardsSent: Friday, October 21, 2005 6:50 AMSubject: [Parents_As_Partners] New Member Rired.
Please welcome our new member.
_______________________________________________________________________
rired96 <taconnolly@...> Wrote:
Both my daughters, Charlotte and Grace, were born at SEMC on 2/1/05 at
32 weeks and I would like to connect with other NICU parents
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