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!