tag:blogger.com,1999:blog-66122142024-03-07T22:36:44.670-05:00Emily's StoryEmily was born with cleft lip and palate on April 15, 2004. This is the story of how we helped make Emily's face whole using the nasoalveolar molding (NAM) device prior to surgery.
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<a href="http://www.ouremily.blogspot.com/2004/04/emilys-birth-announcement.html">View Emily's Birth Announcement</a>Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.comBlogger118125tag:blogger.com,1999:blog-6612214.post-1122775876297695242005-07-30T22:09:00.000-04:002006-06-23T05:49:42.873-04:00WWW.CLEFTSTORIES.COMEmily's blog is now located at <a href="http://www.cleftstories.com">www.cleftstories.com</a>. I just registered this domain so I can add some more functionality to the blog. From now on, all new posts will be from that domain. Don't forget, <a href="http://www.cleftstories.com">www.cleftstories.com</a>. I'll see you there!Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1122687091148405012005-07-29T21:22:00.000-04:002005-07-29T21:31:31.153-04:00Audiology Update<img src="http://www.jacquelinedooley.com/closeup2.jpg" /><br />Emily had a follow-up visit with a local audiologist this past week and the news was good. He said her hearing was perfect, and that her ear canals were three times wider than when we first took her in (about six weeks before she got the tubes put in). At that time he told us that she could not hear well enough to learn to talk. This is a scary thing to hear from an audiologist, but we knew it was only due to fluid and the problem would correct itself when she got the tubes (which it did). Plus the folks at NYU did not want Emily to start with speech until her palate was fixed so she would not develop bad habits. Now she's making many normal sounds and saying a few words ("hi" and "bye" and "mama"). She's doing so well that her speech therapist thinks that she doesn't need therapy anymore! She's going to come in once a month to follow her progress and reevaluate her again as she begins talking more.<br /><br />She's still a very quiet baby and only babbles when she's around us (Me, Jim and Ana). She seems quite happy to watch the world quietly and, while she's friendly, she does not open up to people that she doesn't know. I guess it's not second nature for her to use language because her hearing was so poor for her entire first year of life. I never realized how important that window of time was for language. I'm just relieved that she's babbling now and starting to form words. She's a silent talker - tends to gesture and use some signs to tell us what she wants. I'm looking forward to hearing more words, but I won't push her.<br /><br /><br /><img src="http://www.jacquelinedooley.com/pebbles.jpg" /><br />Well, I had a little fun with all that baby hair. What else am I supposed to do with it??Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1122298051708479262005-07-25T09:16:00.000-04:002006-02-20T20:54:45.300-05:00NYU ReunionI got together with a few other families this past weekend. These are people who brought their babies to NYU around the same time as I brought Emily and now the babies are all one and doing great! Pictures say more than words can..<br /><a href="http://www.jacquelinedooley.com/babies2.jpg" target="open"><img src="http://www.jacquelinedooley.com/babies.jpg" /></a><br />From left to right Sean (18 months), Jackie (13 months), Zachary (13 months), and Emily (15 months). Jackie was not born with a cleft - she's Zachary's twin sister. Michael is missing from this picture which is a total bummer...<br /><br /><img src="http://www.jacquelinedooley.com/emmichael.jpg" /><br />Here's Michael helping Emily with her cup. They played very well together.<br /><br /><img src="http://www.jacquelinedooley.com/emzach.jpg" /><br />Zachary's giving the puzzle piece a taste, and Emily is delighted with his ingenuity.<br /><br /><img src="http://www.jacquelinedooley.com/pool.jpg" /><br />Emily and I in Colleen's pool. It was the perfect day for a swim.<br /><br /><img src="http://www.jacquelinedooley.com/colleen.jpg" /><br />Thanks to Colleen for hosting this party. It was so great to see the babies together and have a chance to talk about the experience with other parents who understand. I hope we make this an annual ritual.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1121041767728391042005-07-10T19:55:00.000-04:002005-07-10T20:29:27.753-04:00Milestones<img src="http://www.jacquelinedooley.com/hello2.jpg" /><br />A true multitasker, here's Emily eating a pretzel and waving.<br /><br />After a cautious start about six weeks ago, Emily has gone from taking 6-7 tentative steps at a time to walking EVERYWHERE. She loves to walk from room to room waving and saying "bye." She's also starting to say new words such as "da da" and "cat." She can make "g" "d" "b" and hard "c" sounds. She still only has four teeth (at nearly 15 months old). I can't wait until more come in. She's making progress at night - sleeping sometimes all the way through, but still wakes up about once a night for a cuddle. She goes to sleep without a fuss now - I just lay her in her crib wide awake, tuck the blankets around her, give her a kiss and her cup with water and leave. It's amazing. She's sucking normally now (I think) - she can empty a cup with a valve in mere minutes, though the valve is slightly augmented. She's really a toddler and has begun throwing tantrums when displeased. It's so hard keeping her royal highness satisfied!Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com3tag:blogger.com,1999:blog-6612214.post-1120483247180417192005-07-04T09:03:00.000-04:002005-07-04T09:20:47.213-04:00Holiday BluesEmily has suffered through another ear infection for this Fourth of July holiday. I'd thought we were done with those since she got tubes put in during her palate surgery in April, but apparently tubes are not a cure-all for infections. We all caught a horrendous cold last week so things have been miserable in general, but Emily seemed really hard hit. She had a fever of over 102 for three days in a row so I took her to the doctor and was shocked when he said her ears were infected. So we've been giving her ear drops for the last couple of days and she's finally doing better - no more fever - and a happier kid.<br /><br /><img src="http://www.jacquelinedooley.com/smiles.jpg" /><br />Here's Emily on the mend after four days of poor sleep and crankiness.<br /><br /><img src="http://www.jacquelinedooley.com/towel.jpg" /><br />No comment necessary.<br /><br /><img src="http://www.jacquelinedooley.com/cowgirl.jpg" /><br />Ana may be too big for this toy, don't you think?Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1119834257387648042005-06-26T20:56:00.000-04:002005-06-26T21:04:17.393-04:00Learning new things<img src="http://www.jacquelinedooley.com/drawing.jpg" /><br />Emily loves to draw, which seems pretty cool considering she's only 14 months old, but she really surprised us when she climbed up on this little chair (belonging to Ana) and started coloring today.<br /><br /><img src="http://www.jacquelinedooley.com/drawing2.jpg" /><br />This kid's got more concentration than me.<br /><br />Emily is doing so many new things. Her speech therapist was so impressed with her progress that she thinks Emily may not need therapy much longer. She has started saying "bye" and waving and she babbles a lot now using both vowels and consonant sounds (a very good sign this soon after palate surgery). I have heard her say "night night" and "catch" and she seems to be trying to say other words such as "again" which was just sort of a "g" noise.<br /><br /><img src="http://www.jacquelinedooley.com/hotday.jpg" /><br />She is climbing and walking a lot more now. Here is my little chubster in a swim diaper (we played outside with Ana and the garden hose). She can climb up and down on that toy without falling (mostly).<br /><br />Her progress is amazing. Seems she wants to make up for lost time.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com2tag:blogger.com,1999:blog-6612214.post-1119403639743787932005-06-21T21:20:00.000-04:002005-06-21T21:27:19.750-04:00Queen of Cups<img src="http://www.jacquelinedooley.com/holdingcup.jpg" /><br />Here's the queen holding her cup. This is such a a huge accomplishment for Emily since we basically held her bottle for the entire first year of her life (a bottle we had to squeeze so she'd get the milk). This is the first time she's really had to work on feeding herself, and she's doing a great job. She'll still refuse to hold her own cup, but she's getting more independent with it. She's started having tantrums which are so sad, but she really is learning. She was throwing the cup down if I didn't hold it, so what I started doing is leaving it in front of her when she signs "more" and walking out of the room. She'll inevitably pick it up on her own and start drinking from it if there was no one to hold it for her.<br /><br /><img src="http://www.jacquelinedooley.com/holdingcup2.jpg" /><br />A nice shot of actual lip closure around the spout (trust me on that). Can you see the dimple near her mouth in this picture? That means she's actually getting suction. She can empty a full cup - with the valve slightly augmented - in about a half hour (she puts the cup down and picks it up a lot during this time).<br /><br /><img src="http://www.jacquelinedooley.com/anacup.jpg" /><br />Ana insisted on demonstrating that she, too, can hold her own cup.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1119235168894755962005-06-19T22:33:00.000-04:002006-03-19T23:52:20.680-05:00Prayers for ZacharyMy friend Colleen has begun the countdown to surgery with her son Zachary (he's in the <a href="http://ouremily.blogspot.com/2004/02/nam-gallery.html">NAM Gallery</a>) who is scheduled for his palate closure on Tuesday, June 21st. Please send prayers, white light, positive thoughts and positive healing energy out into the universe for little Zachary. Every bit helps. Colleen, you are so strong. I will be thinking of you and Zachary on Tuesday and wishing you well.<br /><br />Visit <a href="http://www.geocities.com/c_salvato/zach.html" target="open">Zachary's website </a>to see his gorgeous smile for yourself and sign the guestbook.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1118622636203318702005-06-12T20:20:00.000-04:002005-06-12T20:30:36.210-04:00Cup Update<img src="http://www.jacquelinedooley.com/tongue.jpg"><br />She loves to stick her tongue out, especially if she's looking in the mirror. I wish I was as easily entertained.<br /><br />Emily's gone seven full days without her soft sipp bottle and I think it's safe to say that we're rid of the thing forever. She's now drinking from the <a href="http://www.epinions.com/Healthflow_Big_Kid_Sippy">Munchkin Healthflow Big Kid Sippy</a>, even though she's still a little kid. The spout is much wider than a normal sippy cup, and since Emily can already drink from a regular paper cup, she had no trouble drinking from it. In fact, I think it's easier then a smaller sippy spout which requires she purse her lips more. <br /><br />We give her juice in the Healthflow with a valve, but Jim widened the valve so that she doesn't need as much suction to get the juice out. Still, she needs suction so that means....(drumroll)...she's got suction!! She can't get milk out of this cup with the valve in, I guess because milk is thicker. So we take the valve out for the milk and she does fine. She was on a milk strike over the last couple of days - would only accept the juice from the cup, but once we put milk in the Healthflow (instead of the Gerber cup), she started drinking it again.<br /><br />She's still not truly walking. She can take 6-7 steps at a time, but she's extremely cautious and will only do it if I'm sitting close to her on the floor. She's started standing up and sitting down by herself though, which is a great sign. She'll just do that over and over again and giggle.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1118022700371780532005-06-05T21:33:00.000-04:002005-06-05T21:51:40.376-04:00No More Soft Sipp!<img src="http://www.jacquelinedooley.com/biggirl.jpg" /><br />Here's a picture of Em from yesterday. That little outfit is supposed to snap at the bottom, but she's too chubby and it kept unsnapping. Ah well. It's still cute.<br /><br />Well, we finally did it. We got rid of the <a href="http://www.zip-n-squeeze.com/softsipp.html">soft sipp post op feeder </a>for good. Emily had been drinking milk from these bottles since her lip surgery in October 2004. She initially refused them and we'd had to re-hospitalize her for dehydration. We force fed her for about two days, which was agony, and then she just accepted them.<br /><br />After the three week post-op period was over (from lip surgery), she continued to use them and absolutely refused her Pigeon bottles. We didn't have the heart to force feed her again so we stuck with the soft sipps until her palate surgery last month. We'd ordered about eight more of the bottles back in October and we were still using them as of YESTERDAY. But they had begun to fall apart. They are not really for long term use.<br /><br />This is such big news because it really is huge step for Emily towards normalcy. The soft sipp bottles were always a reminder that something was wrong. People always stared at them when we used them. They also only hold about 3.5 ounces and we were forever refilling them. What's she drinking from now? She's using a <a href="http://www.walgreens.com/store/product.jhtml?CATID=100369&id=prod391567">Gerber Soft Starter cup </a>without the valve now. I think she is able to get some suction, but when we put the valve in she gets extremely frustrated. Overall, the transition to the cup was surprisingly painless. We'd been using the Gerber cups at meal times anyway (for juice) and so she was already familiar with it. This past Saturday she wanted her soft sipp and got pretty cranky, but after her second nap I put her at the table and gave her some gouda cheese, which makes her very thirsty. She glugged the milk from the cup and we haven't looked back since! I'm so proud of her.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1117920761802753032005-06-04T17:26:00.000-04:002005-06-04T17:32:41.806-04:00Post-Op for palate surgeryWe took Emily to NYU for her post-op checkup from her palate surgery. We'd had to cancel the 3-week post-op visit because she had a pink eye and a cold. She did great! Her palate looks good - the surgical resident who checked her mouth said that it looks like she has no fistula (openings in the repair) and the ENT from the team checked her ear tubes and he said they look perfect. Fistula can be quite common, but the surgeon told me that Emily has less than a 1% chance of developing one now that she's six weeks post op. I guess time will tell.<br /><br /><img src="http://www.jacquelinedooley.com/stacking.jpg"><br />We took Emily with us to Ana's preschool yesterday for the end-of-season party. She loved this stacking toy so much we may get her one. <br /><br /><img src="http://www.jacquelinedooley.com/gouda.jpg"><br />Emily's munching on Gouda cheese and cheerios (for your complete breakfast). She loves Gouda - very odd. So did Ana. <br /><br />We're trying to transition Emily off of the soft sipp post op feeder which she's been using since OCTOBER after her lip repair. She is not a happy baby and it breaks my heart, but the soft sipps are falling apart and you can't buy them anymore. There's some kind of defect. I'm sure I'll be posting more about this transition (probably at 4 am while I'm listening to her cry it out).Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1117330390456618142005-05-28T21:26:00.000-04:002005-05-28T21:33:10.463-04:00First and Fourth Birthday Party (and Emily's Walking)<img src="http://www.jacquelinedooley.com/walking.jpg" /><br />Emily started taking steps last week. I mainly held her a couple of feet away from me then let go and she'd sort of walk/stagger/fall into my arms. This is a picture of Emily with her grandma - she let go all on her own then took about 4 steps into grandma's arms. This was during her and Ana's birthday party on May 21st.<br /><br /><img src="http://www.jacquelinedooley.com/walking2.jpg" /><br />A delighted Emily falls into the arms of a very proud grandma.<br /><br /><img src="http://www.jacquelinedooley.com/anagift.jpg" /><br />Here's Ana opening up a present. She had a great time at her and Emily's party and didn't seem to mind sharing the spotlight with her baby sister.<br /><br /><img src="http://www.jacquelinedooley.com/emilymom2.jpg" /><br />A rare shot of me (blogmistress) holding Emily. Em was very over tired and over stimulated at this point in the day, so I held her while she ate her dinner.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1116985678905944612005-05-24T21:42:00.000-04:002005-05-24T21:50:41.290-04:00Mealtime FunHere are a few pictures just for fun. I can't get over Emily's perky little nose.<br /><br /><img src="http://www.jacquelinedooley.com/bagel.jpg" /><br />Emily picked up a bagel that Ana discarded (the bite marks are Ana's). She then proceeded to lick, gnaw and slime the thing until I finally put her at the table and fed her.<br /><br /><img src="http://www.jacquelinedooley.com/bagel2.jpg" /><br />Ana had to get into the picture, but Emily didn't mind. Neither did he poppy seeds.<br /><br /><img src="http://www.jacquelinedooley.com/poppyface.jpg" /><br />Eating a bagel that's as big as your head is serious business.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1116334537118437072005-05-17T08:45:00.000-04:002005-05-17T08:55:37.123-04:00A visit with friends<img src="http://www.jacquelinedooley.com/sydem1.jpg" /><br />We spent this past Sunday visiting with the Troutmans - Tanyia (mom), Jacqueline (grandmom), Sydney (baby bunny) and Kennedy (big sister). Sydney is six weeks younger than Emily (yes, there's a big size difference) and she was also born with bilateral cleft lip and palate. Sydney wore the NAM prior to her lip repair - she was is being treated in Virginia by Dr. Craig Dufresne (surgeon) and Dr. Maull (orthodontist). But enough cleft stuff - pictures are so much more fun.<br /><br /><img src="http://www.jacquelinedooley.com/kenana.jpg" /><br />Here are the big sisters, bonding. Kennedy is a year older than Ana so of course Ana loved following her around imitating her (just like she does with her older cousin, Chloe).<br /><br /><img src="http://www.jacquelinedooley.com/kenana2.jpg" /><br />Ana insisted on spraying suncreen on Kennedy. It took Kennedy five minutes to rub it all in.<br /><br /><img src="http://www.jacquelinedooley.com/sydem2.jpg" /><br />A picture of the girls at the end of the visit. I couldn't get a good shot of both of them with their eyes open.<br /><br />The Troutmans drove for hours for this visit and it was so exciting to see them. We met through Cleftadvocate.org (Tanyia found Emily's picture). I can't wait to get together again. Ana's already asking if Kennedy is coming to her birthday party next weekend. I wish we weren't seperated by five long hours of driving.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1115861125059345532005-05-11T21:11:00.000-04:002005-05-11T21:25:25.120-04:00Progress<img src="http://www.jacquelinedooley.com/silly1.jpg" /><br />Ana and Emily in a cardboard box. It was the only way I could get a picture of the two of them.<br /><br />It has been way too long since my last post, and that's not necessarily a bad thing. Emily's palate surgery was three weeks from yesterday and she is doing great. Aside from getting another cold, which messed with her sleep, she's all healed and making some progress.<br /><br />She's not walking on her own yet, but she has taken some more steps and she's cruising around the house by holding onto anything and everything. The most astounding progress is with her eating habits. She has eating two full jars of babyfood (carrots and squash) in the last couple of days. She's never had more than a bite or two of strained baby food in one sitting. I now think this was due to the food coming through her nose and also because it was hard for her to move the food back to her throat without a palate.<br /><br /><img src="http://www.jacquelinedooley.com/silly2.jpg" /><br />Another cute picture in the box. They play together a lot now and there are some fights too. It's interesting to see a one-year-old get angry at her sister. <br /><br />So we'll be starting with speech therapy again next week. We had to postpone the post-op visit which was scheduled for today because Emily has pink eye. Poor Emily. She's always catching something from her sister or her cousins. Once NYU gives us the okay, we'll begin working with her speech therapist to help her start talking and also drink from a cup (although I tried the cup thing today and poor Em got very frustrated).<br /><br />I'll be updating the blog less often now, probably once a week or so. Thanks to everyone for their well wishes and prayers during this past surgery. It has meant so much to us!Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1114829013056600052005-04-29T22:37:00.000-04:002006-02-04T12:37:22.450-05:00Palate Surgery Recovery - Day 10<img src="http://www.jacquelinedooley.com/stars.jpg" /><br />Emily tried Chicken and Stars soup for the first time today. She learned quickly how to drink the soup and eject the stars (those are a few stars on her chin). Oh well. I thought for a few minutes that I'd get actual food into her.<br /><br />She's doing great 10 day post-op (my how time flies!) and there's almost nothing new to report in terms of her recovery except that she's taken her first unassisted steps over the last two days. This is because I let go for a second when holding her hands and she took a step! Then she fell into my arms and giggled. Now it's a game we play, but I think it's a step in the right direction (pun intended).<br /><br /><img src="http://www.jacquelinedooley.com/hearnoevil.jpg" /><br />She loves bending her arms without the restraints on. Here she is flirting with me (notice I removed the stars from her chin). Except for sleep issues she is pretty much back to herself. We even took her to the park today.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1114694414825509782005-04-28T09:13:00.000-04:002005-04-28T09:20:14.826-04:00Palate Surgery Recovery - Day 8<img src="http://www.jacquelinedooley.com/day8restraints.jpg"><br />Emily had her one year well-baby visit today. She did very well. Her ears were all clear for the first time in months - I nearly burst into tears when Dr. Smith, Emily's pediatrician, told me that. She's lost a couple of pounds and was at 21.8 lbs (she was close to 24 before the surgery). She's also grown taller and is now 29 inches tall. She's right in the middle in terms of percentile - 50th for height and weight.<br /><br />She got two shots and did very well. She didn't even cry for the first one and she only cried a couple of minutes for the second one. I guess she's gotten quite a thick skin after all the medical stuff she's been through. We gave her Benedryl only once yesterday (day 8 post-op) and that was right before bed. I didn't give her any Tylenol at bedtime and she slept very well, almost like normal. It may be because we put the humidifier on in her room (she's been stuffy and I don't know if it's left over from her cold or drainage in her nose from surgery).<br /><br /><img src="http://www.jacquelinedooley.com/anaschool.jpg"><br />Let's not forget Ana - such a great big sister. She's started telling everyone how cute Emily is (isn't my sister so cute?). I dressed her up all pretty-like for school this morning and made her pose for me.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1114548262486775222005-04-26T16:34:00.000-04:002005-04-26T16:44:22.486-04:00Palate Surgery Recovery - Day 7<img src="http://www.jacquelinedooley.com/bristolblocks.jpg" /><br />This is actually from yesterday (recovery day 6), and Emily is playing with her bristol blocks which she loves. She was off the tylenol for the first time yesterday and she did great, but she had a rough time sleeping last night due to the arm restraints. We've been keeping them off during the day, but waching her closely. She had been keeping her hands out of her mouth but now that is changing and the arm restraints are a more permanent fixture.<br /><br /><img src="http://www.jacquelinedooley.com/handshead.jpg" /><br />I don't know what's going on here, but it sure is cute. She's just woken up from a nap and I took the restraints off, so I think she's just experimenting with the freedom of bending those elbows. I think she's feeling a lot better - it's day two without the tylenol (recovery day 7) and she's really trying to put things in her mouth which makes me think the pain is all but gone. I played with her on the floor for a while and then had to put the restraints back on because she kept trying to put things in her mouth.<br /><br /><img src="http://www.jacquelinedooley.com/glasses.jpg" /><br />It's not a baby-related blog unless there's a corny shot of the kid wearing sunglasses. So here's Emily in her sister's glasses. This is a few minutes after the above pictures, so 7 days post-op. Note the pink tongue. Emily has had a problem with her tongue being coated and white for months. Jim's using acidophilus in her milk so maybe that's helping. Maybe it's her new palate. Could be a combination of both.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1114303200960286502005-04-23T20:30:00.000-04:002005-04-23T20:40:00.963-04:00Palate Surgery Recovery - Day 4<img src="http://www.jacquelinedooley.com/day4.jpg" /><br />Emily seems to have turned a corner as of this morning. Jim had a bad moment with her last night when she woke up crying and making an odd sound in her throat. He said she was spitting too. He figured she was itchy and gave her some medicine (not Benedryl - something the doctor prescribed) and put her back to bed. She then slept from 11 pm to 7 am and I got her in the morning. Her diaper was dry, but she was very thirsty. She proceeded to drink about 6 ounces in the morning (1.5 ounces before I gave her any tylenol) and all day long she's been eating and drinking at a pretty good clip. For those of you who want some feeding ideas after palate surgery, here's a few of the things Emily is tolerating:<br /><br />1) Watered down white grape juice (1/3 juice 1/3 water)<br />2) Whole milk in a cup<br />3) Chicken Broth from a regular spoon (turn the spoon sideways so it doesn't go inside the mouth)<br />4) Bologna (I kid you not) break it up into tiny pieces and make sure it's soft. Oscar Meyer is perfect.<br />5) Gerber meat sticks (we've been cutting them up and peeling off the skin)<br /><br />Other ideas include ice cream, yogurt drinks or plain yogurt, pediasure, sherbert and mashed avacadoes. She hasn't touched any of that stuff, but we keep trying.<br /><br />She's very happy today (see above picture - hehe). We're going to give her Benedryl before bed for the next few days because we're not sure if she's itchy or what but she's making that odd noise in her throat again tonight. I got her out of bed (she was crying) and gave her Benedryl and now I have a few minutes to update the blog while the medicine kicks in. It's so good to see her happy and nearly back to normal.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1114218250724743762005-04-22T20:55:00.000-04:002005-04-22T21:04:10.726-04:00Pictures from the big day<img src="http://www.jacquelinedooley.com/bath.jpg" /><br />I gave Emily a bath in our room at Greenburg Hall (the dorm across the street from NYU - they have rooms that patient's families can rent and stay in if they want to be nearby). This is the night before her surgery. She loves to play with the running water, so I let her sit in the empty tub and play with the water for a while.<br /><br /><img src="http://www.jacquelinedooley.com/daddysgirl.jpg" /><br />Jim's holding Emily in the waiting room right before they took us in to prepare her for surgery. It's about 7:00 am and she hasn't eaten yet, but she was very good.<br /><br /><img src="http://www.jacquelinedooley.com/emilymommy.jpg" /><br />I'm wearing a paper jumpsuit and Emily is all ready to go in for her surgery. She's been given something to relax her, and boy she was relaxed. She went into surgery moments after this picture was taken.<br /><br /><img src="http://www.jacquelinedooley.com/swollen.jpg" /><br />This is the day after surgery and Emily is still pretty swollen. She was discharged the next morning and we've been trying to get her to eat ever since. She's slowly taking in more food and fluid, but it's a constant source of worry.<br /><br /><img src="http://www.jacquelinedooley.com/sadana.jpg" /><br />Here's poor Ana looking very sad. She doesn't fully understand what's happening - just that Emily is taking a lot of mommy's attention and that she has a "little bit of surgery" on her face. We're going to make it up to her next week by taking her for a pony ride.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1114046253771434842005-04-20T21:15:00.000-04:002005-04-20T21:17:33.773-04:00Palate Surgery Update & Recovery Day 1Well, the surgery was still on even though she had a cold an an ear infection, so that was a relief. <br /><br />She did really well in the morning and didn't cry like I thought she would when I didn't feed her. She signed "more" a couple of times - a word she uses when she wants milk or juice, but I managed to distract her until they gave her the baby valium or whatever it is that makes them stoned before surgery. She went in at 7:30 and I walked her into the OR and watched her fall asleep. She went down peacefully and that was a relief, but oh it was hard to leave her. <br /><br />The surgery went smoothly and took about 4 hours. She was sitting up in recovery when I got there and crying, but was not inconsolable. Her pain seems managable on just plain old tylenol. She ate a whopping 7 ounces of apple juice a few hours after we got to the pediatric floor and then proceeded to have diarrhea for the next few hours (oopsie). She didn't eat all night, but was on i.v. fluids. They discharged her at about 9 am and she still hadn't been eating or drinking, but we forced some watered down juice at about 3 pm and she had 3.5 ounces. After that she's been accepting watered down juice (grape juice) from a cup at an astonishing rate. I mean she's guzzling it. <br /><br />What's amazing to me is that she seems so much herself already, the day after surgery. I mean, she doesn't want formula but I think she's just extremely thirsty and the juice is refreshing. I took the arm restraints off and let her crawl a bit and she was so happy - playing and stuff. She's trying to put things in her mouth already! I couldn't believe it - so back on with the restraints. She's drinking from a paper cup as though she's not in any pain. <br /><br />So we'll see how the night goes, but she's wetting diapers even if she's not getting much actual food. She's a healthy 23 pounds, so I'm not worried about her wasting away or anything. I guess we'll try some different fluids tomorrow and I'll have some pictures from the last couple of days.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1113753057179829122005-04-17T11:41:00.000-04:002005-04-17T11:50:57.180-04:00FearHere it is two days before surgery and I'm back in this place, this awful frame of mind that I was so glad to be rid of six months ago. I've tried hard not to lapse into self-pity and negativity throughout this blog. This is, after all, Emily's problem and not mine. I wasn't born with the cleft. I didn't have to wear the NAM. I didn't wake up, bleary and in pain, wondering why my mouth had suddenly changed. This is primarily a story of optimism. Emily is happy. She is healthy. She'll be ok.<br /><br />But as a parent, it's so hard to see your child suffer and I'm afraid. I fear the look in her eyes when she wakes up in recovery, with arm restraints on and blood dripping down her cheek. I'm terrified of the crying that I won't be able to stop. The kind that comes at 3 am, in a pediatric hospital room with an i.v. connected to her foot, a panel of blinking lights and buttons and the broken breathing of other anxious parents just trying to make it through until morning.<br /><br />I hate that I can't take her place in that bed. I hate that she'll never understand, not ever, how hard it's going to be for me to hold her and not be able to soothe the hurt. Will she ever trust me again? And I fear the improbable. That tiny chance that she'll never wake up from anesthesia. That the trip to the operating room, with her in my arms, will be the last time I feel her warm and alive.<br /><br />No, this isn't a life and death procedure. But for me it's as huge as the sky, as impossible to climb as Mount Everest, as heart breaking as losing my own soul. There's nothing I can do but be strong for her, but I'm only human and this is my most desperate hour.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com2tag:blogger.com,1999:blog-6612214.post-1113654550440601772005-04-16T08:21:00.000-04:002005-04-16T08:29:10.440-04:00Not So Happy 1st BirthdayWell, as I'd suspected, Emily had an ear infection. I took her to the doctor on the 13th and she had an acute infection in her right ear. As far as I can tell, "acute" means really bad. Dr. Smith, her pediatrician, said the ear was very red and filled with thick fluid, etc. etc. So she's back on Omnicef, a potent antibiotic. I didn't know it at the time, but the ear infection was a precursor to the WORLD'S WORST COLD.<br /><br />Yesterday was her birthday and I didn't post because Emily needed a lot of attention. The cold hit her hard on Wednesday night. She was up half the night with Jim and at 3 am, I took her. I gave her Benadryl and she finally fell asleep at 4:30 and slept through until 8:30. She was very congested all day long with a mild fever of about 100. If you're wondering what this means for her surgery on Tuesday, well, it could mean postponement. However, since it's not a high fever and she's not coughing (which means it hasn't moved into her lungs), she may be fine for surgery. NYU told me to bring her in and she'll be evaluated the day of surgery. Keep your fingers crossed. Postponement will be hard on all of us. We just want to get this over with and get on with the next year which will be blissfully surgery free.<br /><br /><img src="http://www.jacquelinedooley.com/keyboard.jpg" /><br />Here's a picture of her from this morning, playing with Ana's keyboard. She slept much better last night. We put her down around 7:30 pm and she woke up only once at 9:30 pm and then went back to sleep right away until 6:00 am. She looks awful this morning, but her fever was down to 99.7 and she played on her own for a while (she wouldn't let us put her down yesterday). She's back upstairs napping (hopefully). I put her down earlier than usual because she looks so sick (red, watery eyes, puffy nose). I hope to see her improve as Tuesday gets closer and closer.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com1tag:blogger.com,1999:blog-6612214.post-1113403344620698712005-04-13T10:13:00.000-04:002005-04-13T10:42:24.623-04:00Ouch, Ma!<img src="http://www.jacquelinedooley.com/ouch.jpg" /><br />It looks like Emily has another ear infection. Here's a classic sign - rubbing at the ear with that "It hurts, ma" look on her face.<br /><br />Emily's birthday is in two days and her surgery is in six days, so we'd hoped she'd stay healthy long enough to enjoy the former and get through the latter. Apparently her ears didn't get the memo. She seems to have a cold - the first sign of that was lots of crying at bed time. I think the reason she cries when we put her down to sleep is that the pressure in her ears really hurts when she lays flat. Normally this pressure is tolerable, but when she has a cold she gets a lot of fluid and it becomes painful. An infection can cause pain too, I'm sure. I'm taking her to the doctor today (sigh). They know me by my first name there, and it's a busy pediatric practice.<br /><br />I hope that the infection won't compromise her surgery. She really needs those tubes. I know she'll be a lot happier without the constant stuffy ears. Hopefully it will give her the confidence to take a few unassisted steps.<br /><br /><img src="http://www.jacquelinedooley.com/burgler.jpg" /><br />I call this Emily's "burglar" walk. She cases the inside of the house by holding onto the wall and moving around all over the place. I believe she's quite capable of walking unassisted, but she lacks the confidence (fluid in her ears can throw off her balance, which is precarious anyway since she's just learning to walk). She gets around pretty good like this, but I know she'll be a much happier baby when she's finally walking on her own.<br /><br />The countdown to surgery has begun, so I'll be posting much more frequently. Please say a prayer or send out a positive thought or two for Emily to help her (and us) get through the next week. Surgery is Tuesday April 19th at 7:30 am.Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0tag:blogger.com,1999:blog-6612214.post-1112885984146742982005-04-07T10:34:00.000-04:002005-04-07T10:59:44.146-04:00Some Close Ups<img src="http://www.jacquelinedooley.com/drool.jpg" /><br />What's a little drool among friends?<br /><br /><img src="http://www.jacquelinedooley.com/veryserious.jpg" /><br />Can she get any cuter?<br /><br /><img src="http://www.jacquelinedooley.com/hello.jpg" /><br />Yes, she can!<br /><br />I have arrived in Myrtle Beach at the <a href="http://www.acpa-cpf.org/educMeetings/annualmeeting/2005/prezLtr.htm">American Cleft Palate-Craniofacial Association's 62nd Annual Meeting</a>. I'm here without Emily (I miss her!) to discuss the NAM from a parent's perspective. I'm here with the NYU team and it is truly an honor to see them interact and hang out with them outside the hospital setting. They are so dedicated.<br /><br />I will be sitting with the team during their presentation from 4-6pm (or so) this afternoon. It's amazing to see so many professionals gathered together in one place to talk about clefts and other craniofacial disorders. It can be such a lonely road for parents dealing with cleft lip (and other craniofacial issues). I am awed to see so many people in one place who know so much about it. I'm also so thankful for these professionals who have dedicated their lives and careers to helping people like Emily.<br /><br />I am really looking forward to the talks. More Later!Jackiehttp://www.blogger.com/profile/14891251189113447570noreply@blogger.com0