Saturday, December 31, 2011

A toddler is like a ghost

Living with a toddler is like living with a ghost. Things are always just a little off and you can't always tell what's different. Things go missing only to turn up days later in a wildly unexpected place. Random hand prints show up on your walls and appliances. When you hear noises that you can't explain, it causes your heart rate to go up. When you can't see who is causing all the damage, you get worried. Stains being to magically collect. Your batteries always seem drained. Every now and again a smell will rub your nose and disappear. You will not know why that smell appeared or where it came from. Objects move from one side of the room to the other when you step out of the room for only seconds...

Thursday, December 29, 2011

Walking and talking and day care, oh my!

My lil turkey decided to show off for her Nanny and Buppa. She repeatedly took 4-5 steps all over their house during our holiday vacation stay at their house. We were consistently shocked and delighted. And as predicted by her PT, her talking has dramatically increased. We're all so proud. Once again, I'm excited and anxiously awaiting her next PT session.

Tomorrow we interview a woman who is running a day care center out of her house. I've written down a list of several questions. I'm hoping it works out. I'm nervous, anxious, happy, sad. My big girl is growing up!

Sunday, December 11, 2011

Bad News/Good news?

I took Ellie to the pediatrician on Friday. She has a cold, with some fluid in her right ear (presumably that's the one the tube fell out of). Not contagious, or so we were told, but her daddy and I both caught it. The worst, however, was the weight loss. 16 lbs 10 ozs. The pedi tried to tell me not to worry b/c its a net gain, and since she's been sick own. her appetite has likely been dbut honestly I wanted cry. Looks like we're not about to lose the GI. She weighed 17 lbs at her last appointment, and she should have gained since then. So crushing and heartbreaking.

Ellie surprised the dickens out of me. I sat her on her stool and said "Stand up and walk to mommy!" AND SHE DID! I couldn't believe it. We did it probably 100 times. I recorded it 2 or 3 times on 2 cameras. To top it off, I let her hold my scarf while she walked down the hall. She basically walked on her own for the most part, I barely held the scarf at all. I'm so proud of my big girl! Of course now I'm worried that she got my hopes up and will never do it again.

Looks like her 7th tooth finally came through, poor thing. It was really bothering her today, she didnt want to chew her food at all. No cookies or goldfish, or she'd eat them on 1 side of her mouth.

At least she's feeling better.

Thursday, December 8, 2011


Not really. That's why I haven't posted in over a month. She can walk, she just won't. She hasn't said any new words, just babbles. Speech therapy is going to be a long process, I can tell already. Tomorrow I'm considering getting her weighed in hopes of dropping the GI. The GI appointment isn't until the end of Jan (thought it was Dec but when I called, they said no appointment was on record). So my thought process is that if I get her weighed at the pedi, and she's 18 pounds, maybe we can tell the pedi to contact the GI and have her dropped. Pipe dream, I know.

Anyway, back to walking. The PT and I are still pulling our hair out wondering why on Earth Ellie is refusing to walk. She's physically capable, she just doesn't want to. The PT assumes its because crawling gets her everywhere she needs to go (and she can do it at a very high rate of speed). She has very poor spatial awareness so we're working on falling (putting cushions everywhere and just letting her fall onto them when she reaches the end of the couch). PT says she has a contraption of some sort that someone built for her that she will bring to the next session. Which leads me to my next thought process.

Losing PT. If PT is out of tips and tricks, and we can't make Ellie want to walk, maybe its time we save our sanity and give up on PT. Technically Ellie isn't behind yet (18 months is behind), although she's getting there rapidly. On the other hand, I don't want her to start to get behind. Still, walking is the only working on and Ellie will do it when she wants, and not a minute before. Of course, if Ellie is going to start daycare in January, we need her to be walking before then. Cutting out PT could make that more difficult. It's not like we're paying for it, and the PT has been a great success until this point. It's only costing me my sanity and time at this point.

Decisions, decisions.

Tuesday, October 25, 2011

Things I hated about having a one year old

This was so spot on I simply had to share.

A friend of mine recently celebrated her daughter's first birthday, and when we were talking about how fast the year had gone and the fun of first birthdays, her voice suddenly trailed off a bit and she eventually said, "So ... 12 months seems like a really hard age so far. Did you think it was challenging?"


Does a pope wear a funny hat in the woods while standing in a pile of bear crap? You bet your ass I thought it was challenging.

In fact, I wrote some notes about what life was like with my youngest son, Dylan, when he was 12 months old. I call it, creatively, My Least Favorite Things About 1-Year-Old Babies.

They walk, yet they are babies. This is a horrifying combination and should be forbidden by nature. I feel it is a massive Darwinian fail to design babies to be able to heave themselves up on wobbly legs and stagger around like PEOPLE, when they are clearly INFANTS, as evidenced by their total lack of knees/knuckles and their propensity for ferreting out every single choking hazard in the entire house and cramming it in their cry-holes.

Speaking of, they put everything in their mouths. Here is a partial list of what I once fished out of Dylan’s mouth over a 24-hour period: a Curious George sticker, a Band-Aid, a small rock, fifty thousand pieces of paper, a pen cap, his brother’s shoe, a chunk of what I fervently hoped was dried mud, and one mysteriously non-Duplo-sized Lego that must have manifested itself out of another dimension because I swear to GOD I had already hidden all the chokey-sized bricks what the HELL. This was the same baby, mind you, who routinely gagged on RICE CRACKERS and mostly turned his nose up over chunky foods, probably because I didn’t WIPE THEM ON THE FLOOR FIRST.

They have a hair-trigger gag reflex. I became so reluctantly experienced at dealing with a Surprise Cough-Barf, I had an entire honed, efficient tactical action plan involving paper towels and Mrs. Meyer’s Lavender Spray and baking soda and simultaneous bath-preparation and laundry-starting activities and, frankly, this is not one of those life skills I ever wanted to be good at. Dear child: yes, post-nasal drip is gross, but re-enacting the pea soup scene from The Exorcist is infinitely more disgusting for all involved parties.

They are emotionally unstable. Whine, whine, whine. I can’t reach that ball, someone took the pen cap out of my mouth, I don’t like these shoes, this diaper change is filling me with rage, I’m riddled with invisible demons and I don’t know what my problem is so I guess I’ll just scream for about a goddamned hour straight. God, it’s like their brains are still forming, or something. Like they have limited communication skills and get easily frustrated and are constantly bonking their heads on things. SO IMMATURE OMG.

In other words: yes. It's a very challenging age. My god.

However, in the interest of fairness, I do have a few things I love about 1-year-old babies, such as:

They dance. There is nothing, NOTHING like seeing a 12-month-old bopping along with Eninem’s “Crack a Bottle." Uh-oh uh-oh, bitches hoppin’ in my Tahoe.

They love to laugh. Like when you get down on your hands and knees and pretend to be a bear and crawl after your baby going RRWAAR!, and their eyebrows shoot up and they go shriiiiiiiiiiek with pure insane joy before they laugh so hard, they fall over and hit their head on the entertainment center? That’s pretty rad.

They talk all the time, about GOD KNOWS WHAT. “Ba blah da doe blmphz da DER DER pah gee DOH,” they say, and you go, I know, right?

They're full of love (when they're not full of rage). They are in the perfect sweet spot between actively choosing to be cuddled (vs the passive human-represents-food pleasure of the newborn) and figuring out that almost any other activity is more fun than snuggling with Mom. They run full-tilt into your arms. They press their cheek against yours. They sit back to drink you in, then lean forward to sigh happily against your chest.

Their butts are ridiculous. I defy you to gaze upon a 12-month-old’s naked bottom and not feel certain the world is in fact filled with unicorns and rainbows.

I know everyone always says that you should enjoy whatever age your child is, because you'll miss it so much later—but I can't say I miss my children as 12-month-olds. I mean, okay, maybe I miss their squishy little bodies, but that's what photos and loving memories are for.

How about you—where do you stand on the 12-month-old stage? Did you love it best of all ... or mostly suffer through it?
Linda Sharps

Saturday, October 22, 2011

Weight loss, ear tube

Ellie caught a cold. She's down to 16 lbs 1 oz. I am NOT okay with that. She has less than 2 months to gain 2 pounds now. I don't see it happening since she should have gained more since her last weigh in in September anyway. She should have had another pound on her.

The pedi says one of Ellie's ear tubes fell out. We think her right one. The pedi says that unless Ellie gets an ear infection or it causes her pain not to call the ENT. So we're following that advice, even though it was prefaced with "This is what I tell my non-PRS babies."

Thursday, October 13, 2011


She is eating so much better and her little Buddha belly keeps peaking out. Love it! She eats at least 3 pouches of puree a day. Some days she drinks 3 pediasure a day, other days its one or two. She has two front bottom teeth, one front top tooth and her side tooth is coming in crooked, just like mine (unfortunately). We got her a walker off craigslist for $50. She warmed right up to it, thinking it was a toy. She does seem to really like using it tho. We walked to the mailbox and back today and she had an absolute ball. Maybe she just enjoyed being outside for a change! Her 15 months appointment is coming up. Some days I think she's heavy and big, and other days I think, she doesn't even feel 17 lbs! Still mostly babbles but I heard from her PT that now speech therapists are looking more at what a baby understands then what is said back. So its not the speech that they're worried about being delayed; people talk when they feel like it. It's the cognitive development they want to watch. That eases my mind somewhat since Ellie seems to have a wonderful understanding of many things.

Friday, September 30, 2011

How to keep perspective

You may realize logically that people have it worse off than you. You may not ever meet a starving Ethiopian or know someone personally who is homeless. You drive by a hospital and know the people in there are worse off than you. You will know, logically, that those people exist and that "they" are worse off than you. Sometimes, however, it does help to know, to feel, to interact with someone who is, in fact, in real life, in front of your eyes, worse off than you.

Ellie just turned 14 months. Much like crawling, she seems to have the mechanics of walking down, just not the confidence or desire. It sort of hurts my heart. I know I'll be semi-regretful the day she takes off running and hurts herself as she knocks everything I own to the ground. Her friend has started walking which makes me hurt more. I was so depressed I told other special needs moms that I gave up, she is never going to walk. I refuse to stop being hurt about it.

A mother responded:

Our son is six and has been walking really well by holding our hands for the past 3 months I would say. He has been using a walker for almost a year and is a pro at it. We are starting hand crutches now and moving to the next stage to walking without any assistance. It may take time and patience but it will happen and be so worth it in the end!! :-)

6. Her son is learning to walk at SIX. I need to shut up.


We're up to 4 yes FOUR teeth! My goodness!

Monday, September 26, 2011

Third tooth

Ellie cut her third tooth, top to the left (her right). Such a big girl!

Saturday, September 17, 2011

random thoughts

Ellie is applauding all the time, its hilarious. She loves to play in the dishwasher. She pivots on her butt around and around. She's convinced she can walk, which results in a lot of falling down after about 2 steps, hahaha!

Thursday, September 15, 2011

Weigh in!

She did it! She weighs 16 lbs 5 ounces!!! The GI dr said that if she hits the growth chart then he'll cut us lose. We have to come back in Dec and see where she is. I can't believe it! She's turning into a normal kid! We're almost done w/PT (since she's close to walking) and now we're almost done w/GI!

Wednesday, September 14, 2011

1 year check up w/EI and PT

Since it's been 1 year since Ellie started Early Intervention w/Babies Can't wait/Children First/Easter Seals. Our social services coordinator came back so we can set new goals for the coming year. Last year our goal was to have Ellie be able to sit alone so I can leave the room without falling over, and if she did fall over, to be able to catch herself. We're MILES past that point. Really, all that's left is walking and talking. Our services coordinator even said once they stalk walking often a huge upswing in speech will follow. Our PT was there during the one year eval and was exceptionally helpful in helping the coordinator fill out all the paperwork. I guess since she knew what the paperwork was looking for, she knew what to say to help the coordinator in filling it out. Ellie's met a ton of milestones. In fact, the coordinator was almost reluctant to mark Ellie as "delayed" but the PT convinced her that Ellie was moderately delayed so we could continue LOL. She said her speech and walking was delayed so that was good enough. Our goal is to have Ellie pick up and put toys away in her box via walking. Although it looks like Ellie will be walking soon and we'll be able to voluntarily back out of the program. We can re-enter if we feel she's starting to lag behind again. It makes me happy and nervous.

Friday, September 9, 2011

Walking- sort of

She pushed her walking toy across the living the last few days. She's been able to cruise around the couch and coffee table. She can even go back and forth between the two. It may still take a while but it looks like she'll be walking soon-ish. She gets weighed on Thurs.

I'm only slightly disheartened since my 3-month-old nephew got weighed today and he weighs 15 lbs 4 ozs. We're praying Ellie is 16 lbs on Thursday.

Tuesday, August 30, 2011

weigh in and sippy straw

Ellie weighed in at 15 lbs, 11 ozs. We have 16 days to get to 16 pounds! We can do it! Only ounces to go!

I was also able to get her to drink from a sippy straw for the first time ever! A mom had suggested putting a smoothie in there, and she was right!

Saturday, August 27, 2011

So proud!

Ellie was AMAZING at the party today. She tried to swim by kicking her legs and waving her arms, even splashing. I was so proud! She also played with other babies and adults. She even let a guy hold her for a minute without screaming. She's really become so confident! I really couldn't be more proud.

Friday, August 26, 2011

1 year eye exam

Most mothers of miracle babies will tell you they either (1) found religion or (2) have had a renewed faith in their religion. It's really hard not to when you see a child continuously make strides they were told they wouldn't be able to. When you see a child defy doctors and experts you can't help but be joyous and grateful to whatever is making the child take leaps and bounds. When you witness miracles on a fairly regular basis, you gain faith.

Today was Ellie's one year follow up to her eye exam. My Facebook status last year was: "And we strike out at the ophthalmologists office... at least the diagnoses become less and less serious. She's the slightest bit near-sighted in one eye. Glasses await her in the future." I asked the doctor last year if there was any chance her sight could improve and he gave me a strong no. I thought today would be filled with crying fits and a trip to buy some glasses. I prayed while we waited for the doctor to come see us. He examined her eyes and told us he was positive she would need glasses. Her eyes are perfectly fine! She doesn't even need to return next year. We get to wait until she's 3! Amazing!!!

We are still dealing with... something. I think perhaps a combo of teething and a growth spurt. Her temps are all over the place. She was 100.5 after her bath last night, 97.4 this morning. She gets cranky, whiny, needy. She's eating like a horse. She ate during all of PT so her PT says growth spurt. Her sleep is disrupted frequently. -+23 (Ellie says hi). Her drool has increased, she's biting on everything. Could be both. -*+99/ *(Ok Ellie thank you)

I am concerned about her weight, as always. I put her on a produce scale in the store and it said over 16 pounds. I knew that to be inaccurate so while at the post office I put her on their scale as well. That said 14 lbs 5 ozs. I hope that to be inaccurate. She must be 16 lbs by Sept 15th. I'll be trying to weigh her on Weds the 31.

Friday, August 12, 2011

Food for thought

Every mother asks "why?" when they have a special baby. They want answers. Sometimes it's something easy or logical, like heredity and genetics. Sometimes it's something more esoteric and philosophical like, "Because God chose you." Sometimes it even takes a long time to find out why, like if your baby is special so you can help someone a year or more from now with a special baby. We see this a lot in the PRS support group. So many of us are able to answer questions for new members, or frequent members with new problems. Sometimes, I think, though, it can be more complicated and per chance rewarding. I was devastated in the hospital. I found an old (several years) blog by a mom who blogged about her PRS daughter. I found a link to her new blog, which had a Facebook badge on it. I asked to "friend" her. I couldn't believe that there was a mom, on Facebook, with a daughter with the same disease. In fact, she lived in the same state. In fact, she lived in the same county! What were the odds?!?! I'm sure at the time she asked why, and I'd like to think it was so she could help me so many, many years later. Recently, a friend and neighbor of mine had a baby who has a genetic disorder. She's been distraught and confused. I'd like to think perhaps Ellie was special so I could help her. Perhaps.

Thursday, August 11, 2011


During PT yesterday Ellie took 2 more unassisted steps. I was so excited and proud. I asked the PT what else Ellie needs to learn to walk. Basically, just falling. Well, balance I guess is more appropriate. She has none lol. I asked when we could expect Ellie to start walking. The PT said walking takes the longest to learn as it is one of the hardest skills to master. I was hoping 3 months, she said 6 at the latest. This saddens me. 6 months?? So long. And of course it has to be Ellie's idea. She wont do it just because we ask. She has to believe it's a good idea, and her own.

Monday, August 8, 2011

1 yr stats, xray

She stayed 27.5 inches long. She weighed in at almost exactly 15 lbs, which is good because if we keep the weight gain no feeding tube. She seemed to check out just fine, and is in the normal range for development (no signs of delay or autism). The doctor said he expected her to be delayed b/c of all she had been through, whatever the hell that means. She presumably has low iron b/c he put her on an iron supplement twice a day. Anyway, he ordered an xray of her hips since she was breech and he hadn't ordered one previously. Today we went to our usual place- CHoA Scottish Rite. We got the Xray and I have a bad feeling. The Xray tech asked, twice, which hip I hear pop. She asked, twice, about Ellie being in physical therapy. She said to the tech student, "See on 2? Right there." to which the student replied "yeah I see it." And when I questioned the tech she replied, "I'm just gonna make sure a doctor sees it." So we're waiting for the call back.

Monday, August 1, 2011

Speech Therapy Eval

Ellie's speech therapy evaluation with Dr Riski was fantastic. She has no nasality and her palate seems to be working great. Dr Riski said he thought she had a small palate but I explained that she had one of the largest Dr. Williams had ever seen. He was very impressed with Dr. Williams' work (as am I). In any event, he gave me "Straight A's" on parenting. Ellie's speech is perfect, he wants us to keep reading to her, signing with her, talking to her, etc. He wants a big vocabulary which she will pick up as she ages, along with more verbal sounds (like "d" for dada). When we return in 6 months we will also see the pediatric dentist. She may still need speech therapy between the ages of 3-5 but right now, she's great!

Wednesday, July 20, 2011

First Steps!

During physical therapy today, Ellie took TWO UNASSISTED steps! I couldn't believe it, even though I witnessed it with my own two eyes. I was nothing short of shocked. She had been practice walking by holding on to my hands, and we had been using two chairs as parallel bars for her to walk with support but to take unassisted steps?!?! SHOCKING! Of course, she was LIVID that I made her do it and for a solid hour (at least) following she wouldn't even stand but then she she stood up and pivoted from the couch to coffee table unassisted. So she's definitely learning and one day it's going to be over, I'm going to have a full-fledged walker. Her first birthday party is Saturday so it's really breaking my heart a bit. She's so grown up! :*(

Thursday, July 7, 2011

GI Follow up

She weighed in at 13 pounds, 15 ounces. I was NOT happy. She gained 10 ounces in two months. The GI was not upset about her growth, but we had both hoped for more weight. I explained that now she's crawling, and learning to walk in PT, and we try our damnedest to get her to eat all we can but she's schizophrenic about her eating. She's not on a schedule, she won't eat certain things at certain times (sometimes the only thing we can get in her are cheerios, other days it's all about the bottle). She's turning 1 year in just 3 weeks so she's at the age where their weight levels off and their appetite diminishes. He agreed that all those things make for normal baby appetite. However, Ellie cannot afford to be a normal baby. So, our prime directive is to stop the bottle, add in more table food (still with whipping cream and butter), add in pediasure to her sippy cups, and an RX to increase appetite. It's called Periactin. It's an old benedryl concoction, used to treat hay fever and allergies but it also works to stimulate appetite. We do have to watch for the side effect of extreme drowsiness. At her one year appointment we are looking for her to be at about 15 pounds. I don't know what else to do, but she simply CANNOT have a feeding tube. She'll just rip it out all the time. She's smart, she's strong and she's FAST.

Sunday, July 3, 2011

Pool Party

Ellie had her first trip to the pool. I had asked her PT how she felt Ellie would do and her reply was "Who knows? Ellie is an enigma. Things we think she would like she hates, things we think she would hate she loves." Which is true. She doesn't mind toys being zoomed up to her face but if you put her in the swings she thinks she's going to absolutely positively die. In any event, she seemed to be ok with the pool situation. At first she seemed pretty scared of the whole ordeal, but then got used to floating around while eating a rubber duck and suddenly things became a lot more chill for her. She clung to mommy and daddy every now and again but other than that, she wasn't happy, she wasn't mad or sad. LOL

Thursday, June 30, 2011

Future problems

Received an interesting email from the PRS support group...

"I have not posted in a while but my daughter has Stickler and Pierre Robin Sequence. She is 7 years old and has the small mouth and small airway. She has obstructive apnea and sleeps with a Bi-pap machine. She sees a multidisciplinary team annually that encloses dentists, orthodontists (sp), ENT, craniofacial doc. I have already been informed that she will have to have braces and not just that but she will probably have to have some teeth pulled to make room for all her teeth. Her ENT has said that he might need to do surgery to give her more room in her nasal passage.

I am just wondering what other kinds of surgeries might I expect with Pierre Robin as my daughter gets older. Is it always jaw distraction, second cleft palate surgery, tonsils and adenoids out to make more room in her airway?

She has had several surgeries at the beginning of her life birth until about 5 years old. We are currently on a reprieve (so to speak) NO surgeries since 2009. Is there a certain age that starts the jaw distractions, more cleft palate surgery and dental problems? I know every child is different but I do see some commonality in our children. I hope I am making sense?"

Depressing but excellent question. I scheduled Ellie's one year eye appointment follow up. She starts speech therapy in August. She is excelling in PT. I keep thinking, this is about to be all behind us. And then, with this email, I realize it's not. Or it might not be. The dental visits are still very much in the future. So far she doesn't have apnea or breathing problems, so God-willing she won't need a second palate closure, or adenoids and/or tonsils removed. We've been told she won't need jaw distraction but who can say for certain? *sigh*

Wednesday, June 29, 2011

Sleep Regression

Ellie began sleeping only 2-3 hours a night the last few nights. I heard from other mama's in my group that their 11 month olds are acting the same way. I think, however, in Ellie's case that it's her second tooth. It seems to be a much more difficult time with this second tooth than her first.

On a positive note, her PT came today and was positively THRILLED with Ellie's progress. She crawls beautifully, she reaches, she pulls up, etc. She now has to learn to climb the furniture. HAHAHAHA who in the world would ever think I need to teach my daughter to do something like climb furniture?

Saturday, June 18, 2011


I've been making excuses, being in denial. I said I would only say Ellie was crawling if she could get up on all fours and follow me into another room. Well, today she pretty much did. I'm happy and heartbroken. Time to pull out the baby yard, think about more baby-proofing, about how my baby is a big girl now...

Friday, June 10, 2011


Thought I had posted before now. Shame on me. Ellie's tooth is very prominently sticking out. We are enjoying it thoroughly. My husband calls her "snaggletooth." HA! PT is still having its benefits, I guess? She was doing so well and then suddenly she got worried about falling and won't pull to standing without me right next to her, or even sit alone. She did sit alone for PT the other day, and it was about all she did. She refused her afternoon nap so she was in a bad, bad mood for PT. She is rocking back and forth on all fours and most of tonight I was holding my breath as it looked as though she was about to crawl at any second. It made me so sad, I was certain if she did it I was going to cry. In any event, she ended up not having food poisoning as she was still sick the next day but no vomiting. I took her to our pedi's office, although our favorite pedi wasn't in, another doctor saw her. He said she had a stomach virus that had moved into her lungs (which, for the record, she later transmitted to me). She got some liquid albuteral to help her cough it up. She was perfectly fine in a matter of days. (Also for the record, it took me a bit longer)

Monday, May 30, 2011


Ellie's tooth finally poked through a bit today. I'm so excited! I'm also happy to report that PT is still showing its benefits. Today we put her in the shopping cart, which normally she hates! Today, however, she was able to sit in it with little problem. She did fall a bit to the side, but I think that may have something to do with the fact that she was trying to swill down as much as juice as possible as quickly as possible and not really paying attention to what else was going on around her.

On a side note Ellie seemed to have food poisoning yesterday. I was not happy. Daddy wasn't happy, either. When I opened the container of baby food I thought it looked weird, that water seemed to come out first and the rest of it was thicker than normal. She didn't really want to eat it, but I thought well, maybe she's just being a picky eater, she's like that sometimes. Every two hours after that, however, she vomited. She threw up three times in her bed; we almost ran out of sheets. Around midnight we called the 800# for the nurse line because Daddy was so worried about her. They told him the same thing I had told him, we just have to wait for her to get it out of her system, and she'll be fine. No fever, no rash, no bump to the head. We also had to watch her hydration level (which is why at Walmart she drank juice). It seems to be gone for the most part now, but the family got 5 hours sleep total. She finally drifted off to sleep around 2, so we were allowed to follow suit.

Friday, May 27, 2011

Physical Therapy

PT went very well! Ellie is a champ! She's still cheating at some things, she'll act like she wants to knock over the tower of cups, then stop, then roll on her back like she doesn't want to play anymore, and then knock them over because she's closer now. Karen the PT called her a turkey lol. I called her a cheater. Anyway, the step stool we bought her (http://www.amazon.com/gp/product/B000JVZWY4) works like a dream. She has to put her legs side by side underneath it to use it as a table. So we do that and make her look up and down while maintaining balance. She also has to sit on it, keeping her feet flat while looking up and down. We also get her to kneel at it for a minute or so. We still have to have her lay over the boppy and reach for things. It seems to be working though because we've been practicing those moves for the last 2 days and she acts like she doesn't even need to do them. Her balance is amazing! She was even up on all fours rocking again for a bit. She hadn't done that in a while. I was so happy!

Tuesday, May 24, 2011


Although this is probably premature since PT is tomorrow at 2:15. Ellie's babbling has just skyrocketed. She's trying desperately to communicate with her mouth. She's pulling up on everything. She still hates Gymboree. She has learned to get into sitting position by laying on her stomach and walking herself back up with her hands. She has been using her pointer finger to point and push things. She says "YEAH" when she's excited and happy about something. I also feel like she's using her arms less to balance. We'll see how tomorrow goes.

Wednesday, May 11, 2011

Physical Therapy

The PT lady was nice enough. Ellie has a very weak trunk and weak joints, which is probably due to the Sticklers. Ellie was also very shy and reserved. She didn't want to talk much, or really do a lot of anything. It was still a good eval, I guess. The lady said that Ellie had low tone but that it was easily correctable. However, it was interesting to note, even by her, that Ellie seems to have all the necessary skills but for whatever reason won't compile them all together so she can do more. PT Lady noted that Ellie clearly shows a desire to do more, but for whatever reason just can't coordinate it well enough to do it. I mentioned Ellie can get up on all 4s but only in her crib. She said that she was working with another kid who will only walk unassisted when on the couch or bed. The minute he touches the floor he sits like he's fully incapable. Welcome to the party, champ. She also said to keep going to my free sessions of gymboree, it can't hurt and if nothing else will help ease the stranger/separation anxiety Ellie seems to have. At any rate, Ellie was showing enough that it seemed to me PT Lady got what she needed. She saw Ellie roll around, coo, get up on her elbows, put her butt in the air, keep her hands up like she's being robbed at gunpoint, sit for a long time, play with toys, etc. She showed me how to get Ellie up into sitting position from laying down. At least it seems this is one thing that's not my fault. And if she's right, easily curable. Just still makes me sad.

Tuesday, May 10, 2011


Mother's day was fine. I enjoyed my Italian restaurant meal.

I got a call Monday that her PT eval is Weds @ 2:15 pm. This was timely since today was Gymboree play and music (or something like that) day. She hated it. The current theory is that she was tired b/c I had to wake her up to get her out of the car and into Gymboree. So in her head- she's asleep in the car, awake in the heat and sun, then cold room filed with babies, loud music, and a ton of color stuff. She clung to me for dear life the entire time, and cried a few times. When we did the same moves at home tonight she didn't seem quite as resistant. After the class I gave her a bottle and all through the mall she was a delight- squealing, playing, giggling. She even slept on the way home and in the house when I brought her in. In any event, I paid for 4 more classes so we're going to keep going. Hope PT goes well.

Sunday, May 8, 2011

Happy Mother's Day

I'm so happy this Mother's Day. Not only because it's my first one ever, which is exciting unto itself, but because Ellie has made it the best one there ever could be. :D This morning she pulled herself up from sitting to standing all on her own, and then later she gave me a kiss. We've been filming her walking towards me for a while now, so perhaps physical therapy won't be as much in the picture as we previously thought. Her attempts at crawling are coming along nicely as well. I've also gotten 50 free prints from Shutterfly and a groupon for 53% off KidtoKid! I was planning to go there today anyway, but I should find out if its open or not first :D I plan on going to my favorite Italian restaurant for an early dinner, so let's hope the rest of the day plays out as well, if not better.

Friday, May 6, 2011


I was casually watching television (as in, it was on while I was doing other things) and one of those commercials came on. You know the ones- "If you took XXXX and XXXXXX happened to you, please call the law firm of XXXXX." I hate them. Or I did. Maybe. Then I heard the word "cleft palate" and I stopped dead in my tracks. "If you took an antidepressant and your child was born with a cleft palate, please contact us." My husband even walked in the room and asked "Did you hear that?" We were shocked. Stunned. While we had been asked post-birth about everything I had ever done during pregnancy- eating, drinking, exercise, vitamins, drugs, etc- no one had mention a potential link between antidepressants and birth issues. No one. I was on antidepressants for the first trimester, but then stopped taking them voluntarily. Of course research indicates PRS starts between 7 and 12 weeks, so by then it was clearly too late. All PRS moms are searching for answers, and there is a huge debate about what causes PRS. Some say its a genetic issue, but for those of us who have had clean genetics testing results- what then? We have an unconfirmed case of Sticklers. We declined that particular genetic testing. It's not entirely certain, at least of the research I've seen, that Sticklers actually causes PRS. They says PRS is caused by an underlying genetic condition (not proven 100%) and Sticklers could be one of those underlying conditions (again, not proven). I may ask a medical research mama friend to help me out. In any event, I called the doctor and the pharmacy and both confirmed I was on cymbalta. My husband instantly saw dollar signs, especially when he had heard that the Paxil group had each received $1m. I felt an unreal amount of guilt. Everyone says not to, that I couldn't have possibly known, but I do. There's a very real possibility I did this to my daughter. So I'm not sure I want the money. I'm almost hoping they won't take my case because then it means it's not my fault.

Friday, April 29, 2011

9 month check up

Today was Ellie's 9 month well-baby check up. The entirety of the appointment was schizophrenic. At first Dr. W felt that perhaps she wasn't gaining enough weight, eating enough or her head size (16") was too small. But then he reviewed what documents he had, which read they wanted her to gain between 6-11 grams a day and she gained 10. She grew 3 inches. She gained over 2 pounds. The nutritionist wants her to be 14 lbs by the end of next month and she is 13 lbs 4.5 ounces today. Well on her way to 14 lbs. The pedi wants her to take 4 bottles a day- fat chance. It almost conflicts with how the GI wants her to take in more solids. So I just cram more and more food in her however I can. He held out a tongue depressor, she grabbed it and was "regarding it" as he said. He thought that was WONDERFUL! When he did his exam of her he was absolutely giddy that she had such personality coming out (I didn't regard it as her personality as much as her being pissed off that he's messing with her). He was concerned that she wasn't crawling on all fours or pulling herself up yet. Her gave the ok for her PT eval 2 days ago so I'm assuming it will be scheduled next week. He said she needs to follow up in one month, so he's giving her another month to sort of pull it all together before intense, regimented PT is ordered. We'd both also like her speech to come along a bit better. He was thrilled that her jaw was really coming out, thanks, I think, in part to her TWO front bottom teeth racing to come out. He asked me several questions that I was way ahead of so he said I was doing everything perfectly (glad to hear a professional praise my mothering so highly). He asked about her toothbrush, sunscreen, and hat- all of which I told him we had been using for quite some time. So overall he was very pleased with her growth and maturity, and giving her a month to catch up to other babies. I'm not sure how I feel about this, however, since I feel like other babies get 12 months to perfect crawling and speech. Maybe I'm wrong. Half of me thinks it doesn't matter because I'm going to freak out and she'll just wake up and do it like she always does. The other half of me is thinking there's no way we're lucky enough to have a "special" baby that doesn't need intense PT.

Wednesday, April 20, 2011

PT Eval

No PT eval today, just paperwork to get the ball rolling on a PT eval. This just buys us more time for her to really get a good grip on crawling :)

Tuesday, April 19, 2011

Normal Baby Stuff

Tomorrow is her physical therapy evaluation, so today I'm going to focus on all the "big girl" normal baby stuff she's accomplishing.

Her crawling is really coming along. I mean, she can crawl, but I'm not going to call her a crawler until she's up on all fours following me into another room (or leaving me to go into another room!). She seems to understand some words, and occasionally tries to communicate back. She finds it very frustrating that she can't pronounce the word she wants to say. She's gone to a restaurant twice now, and sit in a high chair both times. She was very well-behaved. I was so proud. I'm still proud! Maybe it's just maturity but it's still nice to see how well-behaved she is. She's been very cool about strolling along in her big girl stroller even tho she still seems to small for it. Usually giving her a sippy cup of juice works wonders. She can mostly sit up unassisted by herself, but the minute she gets bored or distracted she falls back over so I'm not saying she sits unassisted. She is doing really well with standing. Sometimes it's difficult to determine if she will walk first or crawl first. She didn't panic at the Easter Bunny like we thought she would, which was a pleasant surprise. She still has some separation anxiety, so she didn't play as well with the group of babies at the picnic as some others did but she did get relaxed and at least sit with me on the ground with them. She can feed herself and use either sippy cup (one with handles and one without). We're still working in "big girl" food, like grapes and pieces of beef or chicken. She's not really a fan yet, but we're working on it. So she has some stuff still left to master, but plenty of other things under her belt.

Monday, April 11, 2011

A Special Child

Stole this from another mom's page who has a special child

A Special Child
You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”

Monday, April 4, 2011

Hearing test (ABR)

Well, it wasn't pretty but the end totally justified the means. Ellie was up every two hours last night, so I was exhausted but evidently she felt great all day and anything but tired. We got to the hospital and checked in, everything went fine. Of course they call us back literally two seconds after I get her to fall asleep. Ellie didn't want to be weighed and kept lifting her head up to sit up, which then caused her to "Bonk" it back down on the scale. The nurse gave up, I told her Ellie's weight from Thursday. They tried to get her blood pressure but it never works. They also forget to get her temperature after I had mentioned she had a low grade fever the night before (99.9) for which I gave her tylenol. The worst part was of course holding Ellie down to get the IV for her sedative (propophol). First they had to hold her arm and shine a light under it to find the vein, which Ellie adamantly opposed. Then, because she was so upset, they had to swaddle her and hold her down to get the IV in. After that it was ok but there were way too many tears and high-pitched screams for this momma. They got her sedated- which is not something you actually want to see... she was so limp and lifeless. It was just so horrifying. We were shown out and walked to the cafeteria for some sandwiches and sodas. We came back, ate and waited. The test was about 45 minutes. Ellie "hooted" every time she could while waking up. She was very smiley though, and that made my heart feel better. She had the red dots from the electordes but they faded as the day went on. The best part, of course, were the results. Ellie's hearing is considered "essentially normal," as the audiologist called it. She was only slightly off on high pitches in the right ear. The cut off was 20 and she needed it to be 25 in order to hear it. The audiologist also mentioned her ear canals are very, very small (duh) and they happened to be dirty (how do you clean microscopic infant ear canals- with ear tubes in them?) so there is a slight likelihood her hearing is even better than we think, although for all intents and purposes its nearly perfect as it is!

On a related side note, this means the ear tugging is 100% teething. The test would not have been able to have been performed if she had an infection or fluid in the ear. So it can only be dirt and/or teething that is causing the ear tugging. Now, we just need those stupid teeth to come in! This also likely explains the strange eating and sleeping pattern she's developed.

Thursday, March 31, 2011

The GI Dr

HOORAY!!! 12 lba, 9 ozs. The GI dr was a fantastic appointment! According to Dr. Seth Marcus' records, Ellie gained 2 lbs and grew 2 inches since December. She seemed 100% fine to him. According to the chart he had on her she had stayed on the same curve. He thinks perhaps the nutritionist was comparing Ellie to a normal baby growth curve, which is horribly inaccurate. So the pedi and the Gi doctor both agree Ellie is doing great. Only the nutritionist seems to have other ideas. So she's outvoted lol. In any event, Dr Marcus also gave us the go-ahead to add some butter to her veggies and some heavy whipping cream to her fruits. Yum! He also said we should check back in 2 months. He did say he was going to see if he could find a more accurate chart by which to measure her, but the growth curve he had was steady. SO HOORAY! Good news all around. :-)

Also on the positive side of things, we are expecting a tooth to pop through any day now. The last few days Ellie has been cranky and extremely clingy. No high fever, only 99-99.4. No big drool. She wouldn't take her fingers out of her mouth but what else is new. Last night she was inconsoleable so in a last ditch effort to contain the screaming I put baby orajel on her. 180 degree turn around. Entirely different baby. Happy, laughing, playing in her exersaucer, went right to bed without incident.

I also called the pedi anyway since her 10 days of amox was up and she had no change. His idea? Might be allergies. Isn't that what I said two weeks ago? Ah well, to be continued, as always!

Saturday, March 26, 2011

Time to eat Crow

I stand corrected, and I will honor the correction. It could be a fluke but Ellie's food intake has really skyrocketed. We've alternated between solids and bottles and it seems like she's eating more than usual. Hubby even said he felt like she must be having a growth spurt. Her sleeping arrangements are all off, she screams at random, etc. Could also be teething or her cold. She has too much going on at once to really narrow down what's truly going on. I measured her and it seems she's add 2 inches to her length from what I could get from her. Its hard to measure an 8 month old! I'm interested to see how this all shakes out in the end. Do solids really work for a reason I haven't deciphered yet? Is she really teething? Is it really a cold? All this and more... stay tuned!

Wednesday, March 23, 2011

just venting

Maybe I'll even get some answers. Today I had a "talk" with the nutritionist on our feeding team who proceeded to tell me Ellie is malnourished (although she said not from lack of trying on my part). Ellie has been 24" long for months now, with no linear growth and she's about 2 pounds away from her goal weight. The nutritionist also said it was time to add back in solids. I don't know why because (1) they detract from her heavier caloried food and (2) she can eat solids, they aren't the problem. She has mastered that developmental milestone. In fact, today she crawled a bit, maybe an inch or so. If they want her to fatten up why are we cutting out the fattening food? I'm also upset that she asked if the pediatrician mentioned anything and I said, no he was perfectly content with her growth. Which means someone's wrong. Either pedi has no idea what he's talking about or the feeding team is really over-shooting her goals. I did the math and to me it seems her weight is fine, for her. In either event, they want me to make a follow up appointment with the GI Dr. I call him the feeding tube doctor. I can't imagine they'd want to stick a feeding tube in her at this point, post-op, but who knows anymore. Clearly not I. And it gets so much better- the nutritionist said if it wasn't malnourishment that was causing her stunted growth (yep, she used those words) than it was likely to be something else and we would need to see an endochrine doctor. Fantastic. Just what I need- another doctor in the Ellie soup. It just breaks my heart. Like she doesn't have enough problems, we have to keep adding to them. And of course my stupid behind thought surely post-op everything would be fine! She'd gain weight! She'd grow! I guess I just put too much hope on one operation. I feel like its too much. I dont want to play the "I have a special needs baby" game anymore. She's such a happy baby with no idea what's going on and that almost makes it worse for me.

Saturday, March 19, 2011

Rock and ROLL

On St. Patrick's Day, Ellie woke up and decided she wanted to roll EVERYWHERE. Under the futon, under the coffee table, inbetween the speakers and the tv. I'm really proud my daughter has decided to be mobile. She gets frustrated she can't crawl yet; she rolls on to her stomach, screams, then drops her head to the floor and cries. Still, this is the first step towards crawling so she may not skip it afterall.

I mentioned this to our pediatrician. (By the way, Ellie was 12 lbs 1.5 ozs on March 18) I said that her physical therapy evaluation is next month and that she does not sit unassisted to the point where I trust her just yet. He said not to worry, he doesn't expect babies to sit up on their own until AFTER they become mobile, because thats how they build up muscles. He also said he doesn't expect to her to become mobile (crawling) until at least 9 months at the earliest. And finally he said not to worry about the evaluation because she's only "at-risk" and there is no actual problem at this stage.

Tuesday, March 15, 2011

physical therapy and babbling

On the plus side, her babbling really has picked up. We hear new sounds, new volumes all the time. I wasn't sure how her hearing and speech would pick up since she's only 7 months but it really has made a difference.

A small piece of her stitches fell out this morning. It didn't seem to bother her at all. I was just glad to see she's healing.

I'm currently losing a battle with my pity party. I fight it pretty constantly, and some days I'm able to look at the silver lining and just revel in the fact that I have a gorgeous, well-behaved, good-sleeping, happy baby girl. Other times, I just cry about how life isn't fair, and how such a darling girl doesn't deserve so many problems.

My friend just came back from her ultrasound. She has a beautiful baby boy on the way, and I couldn't be happier for her. Of course this just reminds me of the nightmare sonogram I had, and how unfair it is that my girl has problems. And I don't want to hate her or be jealous of her, and if I even start to feel that way it makes me feel even worse for thinking it.

Today I also got a call from our social worker that in 1 month Ellie will have her physical therapy evaluation. From my observation she needs it, which breaks my heart.

To add fuel to the fire, my husbands grandmother died. Time to go host my pity party.

Friday, March 11, 2011

Weigh and pity party

Ellie weighed in at 11 lbs, 14 ozs this morning. At first blush it seemed like 10 ozs in two weeks. But then I started doing the math. According to Pat, our pediatrician's nurse, her last weigh in was February 21, weighing 11 lbs 4 ozs. One week later was Feb 28th. Two weeks later was March 7th. So this was almost 3 weeks later. At any rate, I was really hoping for 12 even, at least! Which leads into my pity party. After 6 months, according to my research, the weight gain is about 1 pound a month, potentially 1.25. So if it was not quite a pound and not quite a month, in theory, she's on track. I'm terrified she's going to end up with a ng, post surgery. Then I really will feel like a failure. Failure to thrive becomes failure to act as an appropriate parent. She is getting a nice Buddha belly though. :)

Thursday, March 10, 2011


The ENT office called and said they agreed to doing an ABR, the scheduler will call to let me know when. Fine, if its sooner. If its not Im going to say we already did it!

Wednesday, March 9, 2011

ABR Hearing, Social worker

So. First thing this morning I called ChoA and requested an ABR test. First available? April 4th. Yep, after all that I managed to shave off a whopping FOUR days of waiting- from the appmnt on April 8th to the test on April 4. Go me. Shortly thereafter we got our routine visit from our social worker (in the State of Georgia, if your child is deemed special needs or medically fragile or the like, you are automatically put in touch with social services). I like our social worker, she's a lovely person. She often, however, offers no insight. She just asks if Ellie has hit certain milestones, which technically can be asked over the phone. In either case, I have to straighten up a bit, work out Ellie's nap schedule so she's awake when the worker comes, and throw the dogs out when she arrives. Today was worse for the dogs because it was POURING outside, and even though I let them into the sunroom, they only scratched and cried at the door. Awful. Then we had to go through the monsoon to Walmart to pick up her can of polycose which wasn't ready yet- evidently the pharmacist said 2, I heard 10. I also got texts from my husband explaining what a bad day he was having. Now that I finally have a "break," I get to read ignorant posts on the internet. Like how being gay is a choice, and they're choosing to be damned! Awesome. I'm also reading about all these babies leaping through their milestones- pulling themselves up to standing, saying new words, crawling, sitting up unassisted. I know better than to compare Ellie to any other baby, not just for medical reasons but just for sanity's sake. It still breaks my heart. I know it shouldn't matter but I know she'll be behind, and I am doing everything in my power to make it so she's not. But it's going to happen. And everytime I hear about the progress of another baby it just makes it that much more evident. So I'm stressed. In a bad mood. On the positive side, another PRS baby went through palate and ear surgery and came out with flying colors. Always relieved to hear another baby on the road to recovery. I will try to focus on that.

Tuesday, March 8, 2011

Hearing follow up

This is why God chose me to be Ellie's mom. So yesterday the entire hearing situation was a fiasco. Today was a new day. Today was the day I kicked medical butt in the name of my daughter. Again. I'm almost getting tired of having to grab the medical community by the collar and shake them. Anyway, audiology called to schedule the appointment and I left a message for the audiologist. She returned my call and said they want at least 2 attempts on record before giving in to an ABR. She also said they were only waiting 4 weeks, which wasn't that long. I reminded her that in the world of infant development 4 weeks is much too long. She said she would talk to the physician on Thursday about my concerns. I called the pediatrician and said Ellie failed the hearing test and I want an ABR done pronto. He agreed and put in the order. Tomorrow I schedule the test.

Monday, March 7, 2011

Hearing follow up

Ellie failed her hearing test. They checked, the hearing tubes are open and in place. If this gets cut short, I'm sorry. They stuck plugs in her ears, she failed the test. They asked if she seemed like she could hear at home, and I said yes. So they put her in a sound-proof booth with a speaker on each side, while I held her in my lap in the middle. They brought in a girl to sit with us so Ellie would be "distracted" from hearing. Ellie was way more interestd in the girl. So the girl left. Then Ellie got antsy. The girl came back and tried to hide, Ellie was still mesmorized by her. Then Ellie figured out the game they were playing and just kept looking back and forth at the two speakers. The audiologist tried to tell me not to worry, that the test is only considered "inconclusive." Telling a mother not to worry about her child is like the sun not to shine. They said perhaps she's just not used to hearing yet. Maybe the tubes are interfering. Maybe she's not mature enough to understand what they're doing during the "social" hearing test (ie- you hear something and therefore respond; often at this stage infants pick and choose when they want to react to sound, which is why learning their name is considered a milestone). Then the audiologist asked if she was crawling or sitting yet. I said no crawling (only when necessary) and yes to sitting. Although honestly I don't feel she does that as well as she could. So then the audiologist said that perhaps she's just developmentally behind. Great. Now she's deaf and slow. In either event, she has to come back in a month to see if she's gotten used to her hearing and matured enough to take- and hopefully pass- another hearing test. I suppose part of this is my fault, I could have waited another 2 weeks to schedule the hearing test but I was just so certain she would pass I wanted it as early as possible. I had been talked out of my worry, thinking perhaps she had learned knew words and sounds, that she did startle when she heard something out of the ordinary, she did get upset when loud noises were around but maybe I'm just diluting reality. Guess I really better buckle down on sign language. And if you're wondering how I am, there are so many emotions going on there aren't enough words to express them.

Friday, March 4, 2011

Surgical follow up

The appointment went exactly as I thought it would- he said she has recovered nicely and if we want to let her try to drink from a normal bottle she can. I explained she already had mastered sucking so that would not be an issue, but keeping her hands out of her mouth (as well as other objects) was a battle. He said don't knock ourselves out trying to keep things out of her mouth, and that the stitches should fall out next week or so. He also said the next time he would see us would be at the 12-14 month mark for speech therapy. Depressing. The assistant gave me the speech therapist's card and said to call soon because it takes a while to get in to see him. I can only assume that's because much like the rest of the children's hospital specialists in Georgia, he is the only one. In either case, trying not to look a gift horse so to speak so just enjoying that the surgery hurdle is now behind us. It was a big one. The big focus of my anxiety now is Monday.

Monday is the follow up hearing test. I am heartbroken to think Ellie may have serious hearing problems. Sometimes I think that's the most ridiculous thought in the entire world because she jumps when I even talk unexpectedly. She startles when I laugh hard. She did say "mama" before she even got her ear tubes put in and she's a big fan of saying "oooooh." Sometimes it even seems like she's trying to talk, even though its obviously pure gibberish. Other times, like when she just grunts, or sounds particularly nasally I think, she can't hear at all. She has no idea what real voices and sounds actually sound like. I guess we'll find out Monday.

I am taking Ellie with some other babies and their moms to the Tennessee Aquarium tomorrow, so it will be a good chance for both of us to see how well she's doing.

Saturday, February 26, 2011


So I've caught Ellie snoring a few times which causes me concern since often PRS babies develop sleep apnea after their palate repair surgery. Its not very frequent but her sleeping has changed. On the other hand, she is getting older so it could be coincidental. She does seem to have more food coming out her nose than before, but that could be because she hasn't learned to work her tongue/mouth/nasal passages yet. I really hope we don't need a sleep study because its my understanding they are virtually useless and generally a pain.

Monday, February 21, 2011

Day 13- God is good!

We have our baby back!!!! I can't say enough good things right now. I didn't call my husband to tell him all day for fear of jinxing it. She had no drainage last night. She was happy and smiling this morning when I woke her up for her pediatrician appointment. I gave her Tylenol in case she was getting a shot. She ate a good breakfast, didn't fuss in the car. She laughed in the pediatricians office when I played with her. She didn't cry in the car ride home or in Publix. The entire day was happy, laughing baby again (well, with the usual nap time/bed time fussiness). Even my husband was able to hold her and play with her and get her to smile and laugh.

On a related but side note: Ellie's pediatric office absolutely adores her. Everyone stops to say hello to her when she's in the office. The doctor even said he loved her, literally. When he was able to get her to drink from a cup, he was ecstatic. He hoisted her up on his shoulder and carried her through the office exclaiming "I got Llewellyn to drink from a cup!" He kept telling me how exciting it was, and how excited he was. Its not that I wasn't excited, it's just that I wasn't as excited as he was because I already knew she could suck, and she could drink from a cup like a big girl.

I hope its not a fluke and that my happy baby will be here to stay!

Saturday, February 19, 2011

Recovery Day 11

Well, the last few nights Ellie has had major drainage when she wakes up in the morning. I can see it on her sheet in her bed and on some of the blankets. It is supposed to be a reason to contact the surgeon but since he saw her Thursday and gave her the all clear, I can't imagine something has gone horribly wrong within 24 (now 48) hours. Of course her mood swings have been pretty violent. We love when we see "happy baby" again, but more often its crying, inconsolable baby. Baby who was up between midnight and 2 a.m. last night. To be fair, her sleep/eat/medicine schedule was completely off yesterday. She woke up at 6 a.m. crying, so I gave her medicine and she went to sleep- no food. She woke up at 9 which meant I could feed her but she couldn't get medicine for another hour, and if I wanted to wait for it to kick in before feeding her that's another 30 minutes. That runs real close to her nap time. So all day it was a math game against the clock. Today seems to be a bit better. She enjoyed a short walk in her stroller, and we were able to properly match up food and medicine times. She took a very short nap though so she was a little cranky this afternoon but as I sit and type this she's in hour 2 of her afternoon nap. In any event, I'm still desperately looking forward to the day no medicine is needed, my happy baby girl is back to her old self. And because I'm going insane from the incessant crying at all hours, and being caged up in the house it had better be soon. Her pediatrician appnmnt is Monday. Hopefully we'll hear more good news then.

Thursday, February 17, 2011

Day 9- the surgeon's office

While yesterday was a shining beacon of what's to come, I did not cancel the appointment. Hubby insisted we wait until the night, if it went well we could cancel in the morning, if not we will go (and we means Ellie and I). She woke up at 2:30 a.m. and cried for 30 minutes. I'll be honest, I gave her the Tylenol with codeine. 2 a.m. is not the time for a fit. Sorry. So we went to the surgeon to see if there was some underlying issue that was causing Ellie frequent pain. There is not. Because her palate was wider than most she still has raw spots that require more time to heal. Other than that her mouth is healing perfectly well.

While in the waiting room I heard two other parents of children requiring cranio-facial plastic surgery talking and one asked about the "ten pound threshold." He made it sound as though that was the weight to be reached in order to have surgery. That can't be, I thought. Ellie was over 10 lbs when she was threatened with the G-tube.

In any event, to other moms and dads of palate recovery kids- just be patient. I know its hard. I know you're tired, and you're really over the whole thing. It gets easier and better each day, even if its just by a smidgen. But I won't fault you if you get crazy and want a follow up with your surgeon within a week hahaha. My advice would be to wait until day 10 to make the call, though.

Wednesday, February 16, 2011

Day 8- Sweet relief!

It appears we may be on the upswing. I hate to jinx it but its been an amazing morning and its only 10:30. Ellie only woke up when she was in an uncomfortable position last night. To be fair, it may have been fewer times if I had realized sooner her hair barrette went into her diaper. Her only cries were for hunger (she ate 4 ozs) and when she had a bad poop (which was still good for me b/c she finally pooped)! She's been a sweet girl all morning, helping me make her zucchinis for lunch and playing with her toys. Mornings tend to be her worst, if I remember correctly (and I really can't say if I do or not because my mind is mush), so we could be in for a good day. I even got to eat breakfast for a change! I've been listening to music for the first time in... who knows.... maybe I've hit a manic patch LOL... in either event I haven't decided if I'm going to cancel tomorrow's visit. I may do a last minute cancel, which is rude but I don't want to go in for no reason. I will keep updating.

Tuesday, February 15, 2011

Day 7, misery

The last few nights Ellie has woken up every couple of hours to cry. I called the surgeon and explained that she does not appear to be getting a little better every day, as is expected. I had also noticed a stitch hanging down in her mouth (dissolveable, right). His assistant asked a million questions and said I was doing everything right. Great, which means I'm a fantastic mom who's exhausted by a screaming child on whom I've expended all possible means of calming and healing. Read: there is nothing left I can do to stop the screaming. The stitch disappeared though, either dissolved or went back to the whole from whence it came. In either event the only thing the assistant suggested was switching from Tylenol w/codeine to regular Tylenol as the codeine can sometimes upset the baby's stomach or even make them hyperactive. I think it goes without saying that was a fail since I began this blog with stating how she no longer sleeps through the night. I called the surgeon this morning, we go back Thursday. Now, at least I have something to "look forward" to, so to speak. One of two things is likely to happen- (1) she'll heal up completely the morning of the appointment so it will wind up being a complete waste of time while expending my little precious energy and straining what's left of my nerves to get there on time, or (2) he'll have something useful to make this nonsense end.

In either event this is driving me insane. Every time I think she's getting better- she sits through a feeding without wailing, she smiles at me, she plays with her toys- my optimism is DESTROYED by the screaming and crying that inevitably ensues shortly thereafter. This is also depressing the hell out of me. She's not healing like other babies from a generally typical surgery. She is constantly miserable and I can't do anything about it. I've already done all I can and it's all I continue to do and it's not enough. And while I'm busying focusing on her and trying to save my sanity I'm witnessing so many of her playmates hitting milestones we can't do right now. It's hard to teach crawling in arm restraints. She can't talk when her mouth is paralyzing her with pain. She doesn't even want to sit alone and play anymore, only be held and rocked. I feel cheated. I feel like I've made a mistake. I feel betrayed. To say this is not how its supposed to be is an understatement. F*ing Holland.

Sunday, February 13, 2011

Day ...5?6?

Its Sunday. This has been one of the worst days post-op yet. I heard she should get a little better each day and today was not an improvement. She was fussy all day. She woke up at 3 a.m. and then again at 6 a.m. and again at 9 a.m. Fussy all day. Barely napped. I can only hope this is some kind of hump that we got over. I have also heard that the first week is the worst, and since we're almost done with the first week I can only hope it really will get better each day. Only time will tell. So far everything I've heard hasn't really applied to Ellie. But that's usually true of all babies- what works for one never works for another.

Friday, February 11, 2011

Surgery PT 2

Things I forgot to mention. First, her voice changed post surgery. She sounded extremely congested. We didn't know it at the time but it was due to the packing in her mouth. Once one half of it fell out her voice went back to normal. I didn't pack slippers or anything and forgot how hard hospital floors are. There is a good reason nurses wear orthopedic shoes. For the love of God pack comfortable shoes! Bring your own pillow b/c if you don't know yet, hospital pillows are a joke. I brought my own formula, which went bad b/c there was no fridge. They brought us formula, diapers, and wipes. I didn't pack nearly enough snacks and food, I had to go to the cafeteria when my husband was around, or order room service. I may have packed my moby wrap because Ellie was very very clingy and that may have helped my poor aching back. I didnt pack my DS or my laptop but instead brought my tablet. In retrospect I would have packed both because I never got to use the tablet, and for the most part I sat in a chair with one hand holding the baby and one hand on the remote. By the way, the cable was being "upgraded" so the TV was out. I really should have brought more entertainment that I could do one-handed. I didn't need her nightlight or noise machine, but the noise machine may have helped a little. Hard to tell for certain.

We had heard the kids bounce back in 48 hours. We have found this to be untrue. The first 24 hours were easy, she was on morphine and asleep. The second 24 hours were less enjoyable. To be perfectly honest, I miss my happy baby. She's not her old self and I'm worried she'll never be the same. Probably irrational. She's giggled a few times but for the most part the spark in her eyes is gone. That, to me, has been the worst part of this entire ordeal.

Thursday, February 10, 2011


We arrived at CHOA-Scottish Rite at 6 am. We didn't have any paperwork to fill out so we just sat around for a bit. Not too long, though. We were called back into our pre-op room. They told us the ear tubes would go in first, then the palate surgery. They said she would be knocked out before she even got her IV put in. The nurses asked the usual questions about allergies and the last time she ate. The surgeons stopped by to answer our questions. The surgery wont effect her molars in any way. The surgeon said we could solid foods, as it may be easier for her but definitely continue haberman feeding on an "all liquid" diet. Contradictory, right? Anyway, since our formula is so thick we've been squirting regular AR into her mouth. She has taken the nipple in and sucked, so that's amazing. We also let her drink some pear juice to keep her hydrated. We're going to water down our fortified formula so she can drink it. She is actually doing really well with pain management. The first day she had 2 doses of morphine and mostly slept- while I held her. The second day she was able to have a few squirts of pedialyte so they gave her tylenol with codeine. She had that twice I believe. This morning part of her packing fell out so we gave her another dose, and I think we gave her another one this afternoon but after that she's gone about 8-9 hours without it. She's sleeping most of the time. Still prefers to be held but getting better. I'm still exhausted so I apologize if this gets out of order and weird.

When they brought her back to us they had dimmed the lights, she was wrapped up in a ton of blankets, and pretty delirious. There wasn't a lot of blood, thank goodness, and very little swelling. That made it much easier for me to deal with the situation. She did want mommy to hold her, and only mommy, and all the time. Price you pay for having a baby. She had her no-no arm restraints on, which they called "welcome bands"- hahahaha. We eventually got moved down on the first floor into our recovery room. It was actually quite nice, the fold out couch wasn't terribly uncomfortable. As I said before, we were able to squirt some pedialyte into her mouth and that allowed us to give her tylenol with codeine (there has to be food in the stomach for the tylenol). She was a little cranky, but mostly sleepy. She kept her hands out of her mouth for the most part when her no-nos were not on her. She did not like sleeping in the crib, it was very tricky to get her to sleep in there so for the most part she slept with me/on me on the fold out couch. We are so grateful for how things have turned out. She also didn't have any night terrors from the anesthesia. There wasn't a lot of screaming in pain and agony. We were able to actually get some sleep- even though it was often interrupted and non-consecutive. Everyone was impressed with her, from the nurses to the surgeon. He also said her palate was wider than most but that meant we had to keep a keener eye out for apnea- which she did not develop. The nose trumpet was a pain but she was doing so well they were able to remove it before she went to sleep that evening. The surgeries were very, very quick. After they took her to surgery we walked to the cafeteria to get breakfast and when we walked back into the room the phone rang. The ENT was calling to tell us everything went fine- she had more fluid in her right ear than left, and we need to follow up in 4-6 weeks. I dont like that I have to wait 4-6 weeks to see if her hearing is ok. Someone suggested 2 weeks and I like that better. 45 minutes later the surgeon walked in to tell us about her wide palate but the success of the surgery. Another 45 minutes later she was brought into us. So if you count the time as from 6 am when we checked in and 10 am when she got back in our room it was 4 hours. If you count surgery plus recovery it was 2 hours. If you count surgery alone, only an hour.

By the way, the metal crib looks more like a steel cage. It says less of "a baby sleeps here" and more of either "I can protect you from sharks while diving in the ocean" or "grudge match Saturday night on PPV!" Further, the sheets on the beds gave her a bad facial rash. It's a children's hospital- how do they not have dye-free/detergent free extra soft bedding?!?!

Anyway, she has to be on nasal spray for the next month (twice a day), she had ear drops twice a day for the first 3 days there. She has to be on nystatin for 3 days, three or four times a day. I hate nystatin. It gives her diarrhea and makes her face itchy. She only has to be on it for 3 days though so we'll be done by Monday.

Her feeding really picked up the evening of the second day, she ate a number of ounces so they felt ok to let us go home the next morning. The next morning part of her packing fell out and scared me to death. It was a giant red booger/slug looking thing. I was terrified her stitching or sutures had popped and part of her mouth had fallen out. It really upset her as well, and seemed to cause her pain. We knew the packing would fall out, we were told so by the physician's assistant. We just thought it would be later, and for some reason I had assumed not painful. Plus it looked like her palate had come back. The packing and stuff was so low in her mouth that I had thought that was the palate. Of course logically I know the roof of your mouth doesn't begin at your gum line; it's up much further. All the same I was scared. In either case the nurses looked her over, said it was fine and let her go.

So in summation while in my head I had pictured a screaming restless infant in huge amounts of pain, I got a sleepy infant with pain being managed who was even able to eat a bit. I hope this makes sense to someone who is about to go through the same thing.

Monday, February 7, 2011

Welcome to Holland

This often circles around the PRS Network group, so I thought Id post it here. Its pretty accurate.

Welcome To Holland
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.

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.

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!

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.