Saturday, January 29, 2011

6 month appointment

Can't believe this slipped my mind. Twice, in a way. Ellie had her 6 month check up last week. I nearly passed out when the nurse said she weighed 10 lbs 15 ozs. I started cussing, over and over. She re-weighed Ellie and she said the most would be 11 lbs even. I was panicking. She lost weight. SHE LOST WEIGHT?!?!? Please no ng tube, we're so close to the surgery. Please no ng tube. Our pediatrician came in and said she had gained over 2 lbs since her last visit and he felt that was good. I guess he forgot that two weeks earlier she had weighed nearly the same exact amount (give or take 2 ounces). I'm worried that the surgeon is going to push back her surgery date because of her size. I don't know how rational that thought is, because I know all PRS babies are small and this surgeon prefers surgery at 6 months (the earlier the better is his motto). So the surgical pre-op is at 10 and the hospital pre-op with anesthesia is at 11:30. Both on my birthday. Rockin.

The reason I said twice is because on her actual 6-month "birthday" I completely forgot it was her birthday. Then I felt like a schmuck. Then I said, well, this weekend I'll get a cupcake with a candle for her. Guess what I didn't do? I know its not a big deal but I still feel crappy about it.

On the same note, Ellie fought her 6 month growth spurt tooth and frickin nail. Tired and fought sleep. Hungry and cried while being fed. No independent play, mommy needed to hold her all day every day. It was nightmarish. I did my usual routine of things to figure out what was wrong with her- gas drops, teething gel, constipation aids... nothing. I did my usual research and learned of the delightful 6 month growth spurt. I took a bunch of pictures, I heard that sometimes you can actually see how the baby has changed. I know this to be true of her earlier spurts but I haven't had time to reflect on the pictures of this spurt. I am happy to report she finally fits into some of her 3-month clothes.

The pediatrician said by her 9 month appointment she will be a whole new baby. I look forward to that very much.

Monday, January 24, 2011

Side note

Normally, I try to keep this blog all about Ellie because, well, quite frankly, she's the most important person in the world to me. Her health and well-being are paramount. I spend every waking minute of my life (and hers) with her. But I have to digress a bit because I find myself unable to forget a conversation I had with my brother.

A slight prologue- I love my brother. He's a great guy. He's smart, he's very, very funny and witty. He is mature and responsible. He's a great dad. He married an awesome lady. He trusted me enough to let me babysit my niece all the time for 6 months. I trust him enough that he and his wife are in charge of Ellie if anything happens to my husband and I. All that love and adoration aside, he can be a real... we'll go with jerk.

The other day he was concerned about the upcoming arrival of his son/my nephew. He asked if I was going to have another child, and I said no. (Of course to be fair I never said I was going to have any) and he said he was worried about having 2 young kids. I tried to assure him that it would fine, he will have no issues since they are relatively far apart in age (just under 2 years apart), etc. His response was "HA! You just said you wouldn't have any more and you're trying to convince me having more is ok!" Well, yes, I was. For a few reasons.

First, as the older sister and a friend, it's my job to reassure my friends and family that everything will be ok. That's just being a nice, supportive person. Second, our first born children couldn't be more different. I didn't want to point that out to him because I work so hard every day to remind myself, and everyone around me, that Ellie is a "normal" baby. That "special needs" is just a stupid label she'll probably be able to leave behind in a year or so. That she's even advanced in some ways. If he had a baby in NICU for a few days, if he had a baby that had to wear an apnea monitor, if he had a baby that had an entire special team assigned to her at the local children's hospital, if his baby had an entire team assigned to her by the state government, maybe if his daughter had a massive surgery with horrific looking recovery, if his baby was threatened with an ng tube, or had to have formula recipes approved by a feeding and nutrition team and a GI doctor, then we could compare parental skills. And, on the other side of the coin, maybe if I had a near-perfect pregnancy, a great vaginal birth resulting in a perfectly healthy baby that could breastfeed exclusively for months on end, maybe I'd be more inclined to do it again.

But I said nothing other than, "you'll be fine." I guess I just don't want to have keep pointing out how different Ellie is when all I want is for her to be is, well, the same.

Thursday, January 20, 2011

Snuggle Wraps

This website is incredibly helpful... and heartbreaking.


Palate Repair Expectations

So on the PRS network, it seems lately a lot of babies have had their clefts repaired. One is being done Monday and the variety of responses about what to expect varied greatly. I want to share the responses so that those with PRS can also get an idea of what to expect, and those who do not know what we go through.

Story 1:My daughter's palate was repaired this past summer (she was 11 mos old). The surgery was completed within a couple of hours. She had the palate repair, her tla undone and tubes placed in her ears all at the same time. As soon as she was in recovery and waking, they allowed my husband and I in to see her. I was somewhat prepared as I have seen others immediately post-op before but I must say, she looked pretty rough. There was alot of blood from her mouth, nose and ears (ears probably bc of tubes, not palate). She was also very cranky (understandably) and didn't soothe very well. All she wanted was to be laying on my shoulder and so that's where she stayed for about 99% of her hosptial stay. She was allowed to begin using her haberman bottle again almost immediately (within a few hrs), but she didn't suck, never did, I squeezed the formula into her mouth. Initially all she would take was a small amt of pedialyte but quickly returned to a few ounces of formula every couple of hrs. She was in the picu and it was a private-ish room but no bathroom (which was rough for her pregnant momma all night long, lol!) She only stayed overnight. Surgery was at 7 or 8am and by noon the next day we were driving home. At midnight the night of her surgery, I texted my husband (who was at home with our other children) and told him I didn't think there was any way she would be ready to come home, she was a mess. About 3 or 4am, it's like someone flipped a switch. She settled down, smiled and giggled a few times, finally fell into a good sleep, woke, ate a few ounces of formula. And from that point, continued to improved dramatically and by the time we got home, she was ready to crawl around and play with her brothers. We were sent home with a rx for tylenol with codeine. She used that for the first day every so many hrs as prescribed and then the next day, just regular tylenol with the rx for bedtime and same for the next 2 days. After that I think we had a day or two of just regular tylenol and then nothing, she was back to her lovely self. Really she recovered amazingly fast. She also just blossomed after her surgery, she started gaining weight, looking healthier, her hair started growing in and got long and shiny. That night in the hospital was rough and of course seeing your baby looking so bad and in so much pain was rough but all in all it wasn't as bad as I had envisioned.

Story 2: my daughter had a palate repair done last november when she was 10 months
old and hadn't had any prior surgery.
being honest it was tougher than i thought partly because it was so
upsetting to see her post op looking battered and bruised and seeing her on
itu looking so vunerable. she was there for 2 days and i was glad of it just
to know that she was being closely monitored.
it was also tough trying to get her to eat and drink again but with alot of
patience and analgesia it worked.
do be kind to yourself,have people around on standby but make them aware
that you may or may not want to them to visit-we didn't always feel up to it
and get people to do practical things eg have some food for you and do try
and get some sleep as it is physically and mentally exhausting.
this is not meant to sound negative as she is thriving now and starting to
chat away and her hearing has improved and it is lovely to have it over and
done with.
also do chat it all through with the doctors about what to expect and make
sure you can go to the anaesthetic room with them if you want

Story 3: My son has just a palate repair and ear tubes with not other
surgeries. He didn't have to go to the ICU, but they did have a
heart rate and oxygen monitor on him for the first 24 hours. Even
tho' it's only been a year I can't recall if he was released after 2
days or 3.

One thing that helped my nervousness was to remember this was the
surgery we'd been focused on since the day he was diagnosed and it
was a huge milestone toward his speech development.

I don't know if you've been to the site Nancy put together several
months ago, but she has a good section (yes, I'm biased I helped
write it :-) on the palate repair surgery, what to keep in mind and
what to take to the hospital, etc.


Two things to prepare for: First, it will break your heart to see her
right after surgery. She'll be groggy, swollen, and there will be
blood. Second, if all goes well, within a few weeks you'd never know
she's been through surgery recently. They truly do recover so much
faster than an adult would.

Story 4: Hey my Andrew hurt so bad he didn't need the arm restraints. We used them
for a couple of days and then forgot about them. Our hospital supplied them for
us. The first palate surgery the recovery was about 7 days until he ate.
The next one he ate that night. The first one was the worse the others were a
piece of cake. He had 3

Story 5: alate repair was a lot harder than I expected! It all
started off in the recovery room when he wouldn't wake up from the
anesthesia and started obstructing cause everything was so relaxed. He
stayed the night in ICU and was actually doing really good the next day
and was discharged from there. We were home for about 3 hours and his
saturation levels started dropping again into the lower 80's, so back to
the hospital we went. The plastic surgeon said that swelling reaches
its peak at 48 hours after surgery and his swelling had peaked and was
obstructing his airway. So, they put a nasal trumpet in his nose and
gave him oxygen for 2 days until the swelling went down. We just got
home, and he is doing fine. They said that sometimes this happens with
palate repair, and I don't understand why they let them leave the
hospital before the "peak" occurs, just to make sure they don't
obstruct. My husband thinks that the insurance says how long a patient
should have to stay in the hospital after any particular surgery, and
doctors basically have to discharge, if the baby looks okay. They think
1 night for palate repair will be safe, just another reason why my PPO
plan sucks. Some medically-uneducated person decided that my baby only
needs to stay one night in the hospital....crazy! So, we are home and
hopefully done with Childrens for good, all we have to do is go get the
g-button out in 2 weeks. I'm so glad that palate repair is over now,
thanks for all the replies to my questions.

Story 6: I know exactly what you are going through. rhianna had her palate
repair when she was 10 months old. She will be three in Aug.I will tell you
this after the surgery your little one will look bad, Rhianna was puffey and
bruised. She was hooked up to a vent because of the PRS. She slept for the
next day and a half, when she woke up she was not as cranky as I thought she
would be. The hard part is when you have to feed from the sryenge. It takes
forever. Rhianna was back to her old self after a couple of weeks.I can say
for myself that the surgery and hospital stay was not as bad as I expected

Story 7: The latest e-mails about palate repair really peaked my interest because my 1
year old granddaughter as of TODAY :) had her palate repaired exactly 2 weeks
ago today. Zoe only had a small cleft in the soft palate only. Just to give a
little background, they didn't even realize at first that she did have a cleft
because she was doing so well the first 2 days. She is a twin and there were no
other issues and both babies went home after 3 nights. (C Section because Zoe
was breech) My daughter carried full term and Zoe was 6-4 and Ty was 5-15.

My daughter and husband were told to make an appt. with a Cleft Palate team.
They live about 20 - 25 minutes outside of Philadelphia, so they had several

Zoe's first year of life has been uneventful in terms of the cleft. Yes, she is
tiny, but loves her solid food. She never had any type of breathing issues.
Initially, the doctors were always concerned about her weight gain, but now say,
"What a petite little girl!" Developmentally, Zoe and her twin brother both
started walking before they were 11 months old.

What I have concluded from reading the e-mails concerning the repair is how
DIFFERENT everyone's experience is. I only say this because I think it is
difficult going into the surgery and recovery with certain expectations and then
creating more worry and stress for yourself if they don't follow the pattern of

Even though Zoe's opening was very small, her surgery lasted from 9 - 2.
(including recovery & tubes) We were informed every hour on the hour as to how
she was doing and everything was going as planned and she did great. We were
told that her mouth opening was very small and this made things go a little
slower, but still extremely successful. Initially, her little face was quite
swollen and I am assuming that because of her small mouth, the swelling of her
tongue appeared significant. At first, her tongue appeared to take up the
entire opening of her mouth. However, her oxygen level stayed at 99%. From
everything I read ,(you can tell I am the one who has time to do all the
research and not my extremely wonderful daughter who has 1 year old twins and
another active boy who was 4 1/2 when the twins were born lol) we were told that
"you won't believe the difference in her swelling in 24 hours. Well, 24 hours
went by and she really did not look a whole lot different. Yes, concern, worry,
tears, and questions certainly did arise. However, almost 48 hours to the
minute of the end of surgery, Zoe's features started to reappear. Yes, she
still had a cute little nose and bright blue eyes. Her 6 teeth were still in
place and believe it or not, her tongue was the same size it was prior to
entering the OR.

We were also told that typically you stay 1 or 2 nights---mentally, we prepared
for 2. We stayed for 3 and of course were disappointed. We were told that she
would probably be interested in trying a popsicle or juice from a syringe after
the first day. This interest did not happen until day 3. Some people told us
their child was interested in playing in the playroom of the hospital. Zoe
would not leave our arms from Wednesday night (after hitting her head twice on
the sides of the metal crib) until Saturday when we were discharged.

I read where someone said their doctor said "No Sippy Cup or Bottle for 3
weeks. Our surgeon, who I will tell you is highly regarded in the Philadelphia
area, as well as through the United States, said she could drink from a sippy
cup as soon as she showed an interest and even said the bottle we were using
with the small nipple was fine. Zoe never had any arm restraints and it is
almost as if she knows not to put things in her mouth as she had previously

As far as her personality, I would describe the first couple of weeks as "out of
sorts". She was clingy and somewhat whiny and just seemed like she couldn't
figure out what she wanted or what would make her feel comfortable. Each day
seems a little better (as I am told by my daughter), but the best thing is that
it is behind us.

Wow---I wrote a whole lot more than I ever intended, but I think what I really
want to say is: Medicine is NOT black and white. Just because one child's
experience with the cleft repair went one way does not mean yours will be the
same. Take each hour as it comes and know you are one hour closer to recovery!

And finally, tips from the PRS Network:

Typical hospital stays for cleft palate repair would be one to three days, dependent on the child and the surgeon. Most surgeons want the child weaned from the bottle prior to surgery. Some surgeons want the baby to be weaned from the pacifier as well. Make sure you discuss all these issues with your team. It is very important to know what their post surgery guidelines are before surgery, so you won't have any surprises.

For some babies, this is their first surgery. We have some tips for parents and caregivers that have been received from our parents.

* For working parents, try to take off as much time as you can.
* Ask the surgeon about the type of splints they use and their instructions on how long they are to wear them. We have heard great stories about Snuggle Wraps
* Take old clothing for the hospital stay, babies will have some bleeding and you will be doing lots of cuddling. Also, take extra clothing.
* Be prepared for that first look after surgery, there will be swelling and blood, that is normal.
* If the weather cooperates, have the baby wear long sleeves and the splints can go over the sleeves.
* Be creative with that soft food diet. Take their favorite foods and blend them, remember to provide healthy high protein foods. Stock up on these items before the surgery, so you don't have to leave the baby to go grocery shopping.
* Pain relievers on a regular basis are crucial. You don't want the pain to get ahead of the baby. This is especially true the first few days. Review the medications and usage with the hospital staff in detail.
* Try to get as much rest prior to the surgery, you will need it!

One of our parents compiled this comprehensive packing list for cleft palate repair surgeries.

Child's Pack List

favorite blanket
bumper pad
stuffed animals
crib mirror
crib fish aquarium
CD player and CD's
small picture album w/family photos (fun to look at)
front button onsies (easier than over-the-head) for ride home
old bibs
front button P.J.'s
sippy cups (our entire collection, what did NOT work pre-op, may work post-op)
open-end cups
favorite baby food and juice (hospitals usually have the basic flavors and only apple juice)

Parents Pack List

old comfortable clothes (they will get bloody) including t-shirts, sweatpants, tennis shoes
list of phone numbers and email addresses to update family
money for drinks and food
magazines, books, Baby Book
pillows packed in a laundry sack (used later for dirty clothes, hospital pillows are too flat)

So this is what I get to look forward to in about 19 days.

Sunday, January 16, 2011


I talked with a woman whose granddaughter had her soft palate closed surgically last week. She gave me a lot of helpful info. With Ellie's surgery only 23 days away, it was also somewhat comforting.

She told me that her surgery did last about 5 hours. The baby went back to the OR at 9 am, and at 2:10 they were all together in the recovery room. She also said a nurse would come out every 45 mins or so to assure them things were going well. I was surprised when she said her daughter held it together very well, only crying twice and once was because she was so sleep deprived (the other was when they first brought the baby out). Grandma said the baby was very swollen, and it was strange because the baby's features seemed to come back one minute to the next. They did end up having to stay 3 days in the hospital due to all her swelling. Also, she refused to eat for the longest time. After 3 days she finally had pudding for breakfast and was able to leave. I forgot to ask about tie-downs/no-nos. Anyway, the baby is about 98% back to normal this week, altho Grandma says still not entirely back to her old self. I had heard some babies bounce back within 48 hours but this baby was not the case. The baby is also a year old, Ellie will just be 6 months during her surgery. I said we were going in on a Tuesday, she said to plan to leave on Friday.


Sunday, January 9, 2011

Stupid Wonder Weeks

Ellie has been exceptionally fussy today and I couldn't find a reason why. After all, she's eating like a champ, pooping just fine, sleeping through the night, no bright red gums from teething and she can't possibly be sick since she's still on penicillin. It may be a "wonder week"- aka a week where babies act differently because of a milestone (usually). A wonder week in this stage starts at week 23 and peaks at week 26, we're rolling into week 25. Evidently the baby's eyesight changes and they can now see near and far, so they begin to realize mom is out of reach, the toy is out of reach, they're way up high off the ground when being held, etc. That could be why. Or maybe she's just having an off day, everyone has them.

On another note, we're trying solids. I'm supposed to be pushing the sippy cup but I'm not. Its just not on my priorities. I guess it should be, I heard it helps after the surgery. So far she's had bananas, peas, guacamole and I made zucchini she hasn't eaten yet. I also need to find a peeler to make the applesauce.

While we're on the topic, her surgery is in 30 days. Yep, one month roughly. Another PRS baby, Zoe, had her surgery last week and the grandmother promised to update me on everything (knowing our surgery was just around the corner). I haven't heard back from her yet, I'm sure its been a very rough weekend for them. Ellie keeps trying to stick her entire hand into her mouth, and that makes me think she'll HATE the no-nos and be in them even longer than previously anticipated. Another PRS baby is having his surgery in March, and I made the same promise that was made to me- I would tell her everything and anything about our surgery so she would be prepared for her son's procedure.

Saturday, January 1, 2011

Ear infection

The holidays went really well, Ellie was spoiled from the grandparents, of course. We haven't had any PRS related problems until now. While PRS babies are prone to infection, Ellie had skated through with no problems until now. I was talking to several of my mommy friends as well as my sister and they all said their babies had various illnesses and not one had a fever. Dana said her Cara didnt even act sick. It was just the hives that made her go to the doctor. My husband had mentioned Ellie had kept her cough for a few weeks. I had said when he got the sniffles around the 10th of December that he had given them to Ellie but her nose hadnt run and her sneezes had been few and far between so I forgot about it. She was pulling on her ears but that seems pretty common, especially with babies that teethe. Then she started sneezing more. And the cough lingered. Still no fever but the runny nose came back. No vomiting, no random acts of fussiness. But all that my friends and family had told me was that this year, illnesses seem to be in hiding. So off to the pedi we went. Ellie weighed in at 11 lbs 2 ozs. So she's staying on her same curve, and inching closer to being on the chart with all the "normal" babies. He also said that with her trunk and neck control as well as her interest in whats going on around her, her verbal skills (she did say MAMA while we were in Florida for the holidays) and how alert she was that he felt she was acting like a 7-8 month old. Unfortunately he also said she had an ear infection but he was pleased that she had gone 5 months without an infection, a near record for a PRS baby. So she's on that penicillin that is pink and supposedly tastes like bubble gum. Hubby and I both had flashbacks, yuck. She tries to eat it anyway, even with the grimace on her face.

38 days until the surgery. The thought of it makes me tear up.