This often circles around the PRS Network group, so I thought Id post it here. Its pretty accurate.
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Ellie
Monday, February 7, 2011
Day Before Surgery
For the record, yes, I did have multiple anxiety and panic attacks last night. I thought I was going to vomit at one point. No one slept. Ellie woke up every 2 hours, I barely went to sleep in between her waking up and my being awake kept Bryan awake. With any luck that means we'll all sleep like logs tonight- hahaha.
The hospital called to confirm we are scheduled for 8 a.m. surgery, and we need to arrive at 6 a.m. which means waking up by 5 a.m. Lovely. Dr. Thomsen is doing the ear tubes. Dr. Williams will be doing the palate repair. Its gonna be such a long day.
The ENT is supposed to tell us about follow up and care. I hope they do. I'm also curious because they said some of the skin they'll be using for her palate repair will come from the area where her molars come in. So what happens when her molars come in? Is there still room? Is it going to be extra painful? I'm also really confused about post-op feeding. I know I am supposed to feed via syringe or Haberman. I emailed the feeding team and they said to continue using our fortified formula until she is meeting her proper hydration volume (and I am supposed to ask someone- don't know who- what that is). Then I talk with the pedi and the GI dr to determine where to go from there- do we not use fortification? Do we add back in solids? They did say it would take about 5-10 days to get back to normal feeding. Lovely. It was also "highly recommended" that we give her pain pills. This is gonna be so baaaaaaaaaaad. I know, think positive thoughts right? Well, in this instance I am working under the presumption that she'll be fine as far as surgery goes but the worse I make it in my head, one of two results will occur- I will be super prepared for the nastiness which ensues or it won't be as bad as I think.
The hospital called to confirm we are scheduled for 8 a.m. surgery, and we need to arrive at 6 a.m. which means waking up by 5 a.m. Lovely. Dr. Thomsen is doing the ear tubes. Dr. Williams will be doing the palate repair. Its gonna be such a long day.
The ENT is supposed to tell us about follow up and care. I hope they do. I'm also curious because they said some of the skin they'll be using for her palate repair will come from the area where her molars come in. So what happens when her molars come in? Is there still room? Is it going to be extra painful? I'm also really confused about post-op feeding. I know I am supposed to feed via syringe or Haberman. I emailed the feeding team and they said to continue using our fortified formula until she is meeting her proper hydration volume (and I am supposed to ask someone- don't know who- what that is). Then I talk with the pedi and the GI dr to determine where to go from there- do we not use fortification? Do we add back in solids? They did say it would take about 5-10 days to get back to normal feeding. Lovely. It was also "highly recommended" that we give her pain pills. This is gonna be so baaaaaaaaaaad. I know, think positive thoughts right? Well, in this instance I am working under the presumption that she'll be fine as far as surgery goes but the worse I make it in my head, one of two results will occur- I will be super prepared for the nastiness which ensues or it won't be as bad as I think.
Friday, February 4, 2011
Pre-op, My Birthday
Yeah, same day- can you believe it? What luck, right?
So for my PRS families, here is how our day went:
We started the day at the plastic surgeon's office. We noticed a lot of babies in the waiting room. We went back and met with our surgeon's PA. She seemed very smart and knowledgeable (and very nice!) and would be assisting during Ellie's surgery so it was reassuring that we were talking with someone who actually knew what was about to go on. My concern was that we would meet with a nurse or someone who would repeatedly answer the equivalent of "I dont know." The PA also told us that our surgeon sees, on average, 70 babies every Thursday. This is disheartening, to know that so many babies need help. It's also helpful because it reassures me that clearly our surgeon does this a lot, and he's good at it. She also gave us a few pages of instructions and FAQs, some of which I had on my own. For the benefit of those parents who do NOT have such a sheet, I will post them here. And wow, brace for a ton of paperwork!
The surgery should last 45 minutes. Yep, no multiple hours. I was shocked but relieved. She will be in recovery for about another hour before she is brought back to her room, where we'll be waiting. She doesn't have to be weaned, per se, but no more paci post-surgery. I really can't think of anything that's gonna suck worse for me lol (no pun intended)!! They have said we may have to syringe feed her post-op, but most likely will just continue with the haberman feedings for the next 2-3 weeks. I asked about feeding solids, and got an iffy reply, even when I explained we had a rubber-tipped spoon. So just to be safe, we're going to regress to bottle-only for a while. Its not like its going to hurt her. She's not likely to develop oral aversion at this point, and only for a few weeks of feeding via haberman. Her tongue will be tied down but is likely to be untied during her recovery period. We will be using the no-nos for about 2-3 weeks, but only when I can't watch her to make sure she's not putting things- like her thumb- in her mouth. Guess that goes for sophie too? We're getting a double repair- he will repair the floor of the nasal cavity and create a palate. I am hoping this will help decrease nasality in the future. The chances of needing a second repair for this procedure across the board is 20%. They will watch for apnea in the hospital and if it comes up we will deal with it then. We will also need to watch for infection. We will be given tylenol with codeine and nystatin to deal with the possibility of thrush. We were also told be prepared to spend 2-3 nights (not days, nights).
Then we went to the hospital for their pre-op. It was almost entirely paperwork, then they took her BP, heartrate, measured her head, and weighed her. Her weight has stalled at 11 lbs. The hospital told us they will call and tell us what time our surgery is and what time to arrive. We were told by the desk clerk (because I asked) that our surgery is scheduled for 8 am and we should arrive at 6 am (at first I was like oh thats so early but then quickly realized- cmon, am I gonna sleep that night anyway?). He told us that we could get "bumped" if a smaller baby needing surgery comes in. I laughed hysterically on the inside. Trust me, dear sir, there ain't no smaller baby comin in here than my baby. Especially before the crack of dawn.
So it was long, and mostly uneventful. More like a pain the butt. All that time and paperwork so we can agree to let our little girl have surgery. But now we must focus on the weekend, which will entail doing laundry so we can pack for next week. Mostly I look forward to next year when I can honestly not remember what I did this year for my birthday. Although perhaps skipping ahead even a month would be enough!
So for my PRS families, here is how our day went:
We started the day at the plastic surgeon's office. We noticed a lot of babies in the waiting room. We went back and met with our surgeon's PA. She seemed very smart and knowledgeable (and very nice!) and would be assisting during Ellie's surgery so it was reassuring that we were talking with someone who actually knew what was about to go on. My concern was that we would meet with a nurse or someone who would repeatedly answer the equivalent of "I dont know." The PA also told us that our surgeon sees, on average, 70 babies every Thursday. This is disheartening, to know that so many babies need help. It's also helpful because it reassures me that clearly our surgeon does this a lot, and he's good at it. She also gave us a few pages of instructions and FAQs, some of which I had on my own. For the benefit of those parents who do NOT have such a sheet, I will post them here. And wow, brace for a ton of paperwork!
The surgery should last 45 minutes. Yep, no multiple hours. I was shocked but relieved. She will be in recovery for about another hour before she is brought back to her room, where we'll be waiting. She doesn't have to be weaned, per se, but no more paci post-surgery. I really can't think of anything that's gonna suck worse for me lol (no pun intended)!! They have said we may have to syringe feed her post-op, but most likely will just continue with the haberman feedings for the next 2-3 weeks. I asked about feeding solids, and got an iffy reply, even when I explained we had a rubber-tipped spoon. So just to be safe, we're going to regress to bottle-only for a while. Its not like its going to hurt her. She's not likely to develop oral aversion at this point, and only for a few weeks of feeding via haberman. Her tongue will be tied down but is likely to be untied during her recovery period. We will be using the no-nos for about 2-3 weeks, but only when I can't watch her to make sure she's not putting things- like her thumb- in her mouth. Guess that goes for sophie too? We're getting a double repair- he will repair the floor of the nasal cavity and create a palate. I am hoping this will help decrease nasality in the future. The chances of needing a second repair for this procedure across the board is 20%. They will watch for apnea in the hospital and if it comes up we will deal with it then. We will also need to watch for infection. We will be given tylenol with codeine and nystatin to deal with the possibility of thrush. We were also told be prepared to spend 2-3 nights (not days, nights).
Then we went to the hospital for their pre-op. It was almost entirely paperwork, then they took her BP, heartrate, measured her head, and weighed her. Her weight has stalled at 11 lbs. The hospital told us they will call and tell us what time our surgery is and what time to arrive. We were told by the desk clerk (because I asked) that our surgery is scheduled for 8 am and we should arrive at 6 am (at first I was like oh thats so early but then quickly realized- cmon, am I gonna sleep that night anyway?). He told us that we could get "bumped" if a smaller baby needing surgery comes in. I laughed hysterically on the inside. Trust me, dear sir, there ain't no smaller baby comin in here than my baby. Especially before the crack of dawn.
So it was long, and mostly uneventful. More like a pain the butt. All that time and paperwork so we can agree to let our little girl have surgery. But now we must focus on the weekend, which will entail doing laundry so we can pack for next week. Mostly I look forward to next year when I can honestly not remember what I did this year for my birthday. Although perhaps skipping ahead even a month would be enough!
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.
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.
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
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.
http://www.pierrerobin.org/cleft-palate-repair.htm
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
options.
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
"expectation".
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
done.
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
stroller
favorite blanket
bumper pad
stuffed animals
crib mirror
crib fish aquarium
CD player and CD's
books
small picture album w/family photos (fun to look at)
videos
nightlight
front button onsies (easier than over-the-head) for ride home
old bibs
sweatpants
socks
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
slippers
robe
toiletries
camera/film
camcorder/tapes
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.
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.
http://www.pierrerobin.org/cleft-palate-repair.htm
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
options.
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
"expectation".
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
done.
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
stroller
favorite blanket
bumper pad
stuffed animals
crib mirror
crib fish aquarium
CD player and CD's
books
small picture album w/family photos (fun to look at)
videos
nightlight
front button onsies (easier than over-the-head) for ride home
old bibs
sweatpants
socks
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
slippers
robe
toiletries
camera/film
camcorder/tapes
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.
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