Swallow Study - June 30

Well we're back in the game first thing this morning! Today you had your swallow study and OT, tomorrow you see the pulminologist and PT (and both sisters have dentist appointments!), Wednesday is ST and OT, Thursday we get to meet the orthopedic specialist and start looking at a long term plan for your feet (hopefully!) and have out rescheduled geneticist appointment and then Friday we finally have a clear day!

You've started getting really excited when you get in your chair and absolutely refuse to lean back and relax - there's too much to see and you can't miss any of it!

The swallow study went REALLY well! They started you off with apple sauce, thinned it down to a honey consistency, then purée, then nectar and finally thin liquid. You did great with all of them except the thin liquid - more of that came back out of your mouth because you haven't mastered keeping your mouth closed. What you kept in, you had no problem swallowing though!

They suggested working with the speech therapist on lip closure and getting the spoon further into your mouth to help facilitate the swallow. Overall, you can safely swallow everything and we have the green light to start introducing good as long as you tolerate it!

As a bonus, when we were leaving the hospital, we ran into the trach training nurse! It was so good to see her again - and she plans in stopping in to see us at the pulminologist office tomorrow too!

Such a great day, and you rocked in another J.O. Original dress :)

Your First EYL Camp - June 21-27

I've always wondered if all the extra stuff people take on vacations with babies is really necessary. I know they come with special needs and items, and you want to keep them on as much of their normal routine as possible, but after loading down Nanny's car to head out to Kerrville, I completely understand. Believe me, I would have loved to leave half of it behind...

I pulled out tubs for us to pack in so they would stack nicely - one for me, one for Little Big and one for you (Daddy and Big Big were coming later in the week). Then we added one for your medical supplies. Then we had to fit in the oxygen tank, the ventilator stand, the suction machine, your pack n' play, the monkey rocker, and your chair. Plus all of the regular stuff that comes with you (portable suction, emergency bag, feeding pump, nebulizer, pulse ox...) Then I realized I had to take enough frozen milk to make it through the week so we had to add a cooler. Then I remembered your boppy and the piano toy (which the PT and OT agree is the best toy for you right now because it fully engages everything - your hands, feet, arms and mental abilities). Then we were ready to go.

Whew!

We got there around 10:00 but our room wasn't ready until almost 2:00 so we just hung around the camp office and got some of that stuff set up. As people were coming in they got to meet you - most importantly, Mr. B and Mama M got to hold you finally!

You loved meeting all of your new friends:

And got to spend some quality time with Nanny and Cranpol:

Nanny did such a great job taking care of you and learning everything that goes into that! I am so thankful that she was willing to come spend a week (a lot of it alone in a dorm room with you!) to help take care of you so that I could focus on what needed to be done for camp. By the end of the week she had everything figured out and could even get you loaded up on the stroller with all of your gear!

You did so well with all of the noise and the racket. There were a couple of days that you got a little fussy because you were SO tired but refused to go to sleep, but for the most part you were awesome and would go to sleep wherever we were at the time. You got a lot of comments about how good natured and calm and happy you are. Such a sweet baby and smiled all week at everyone you met!

Little Big wanted some "real" EYL shirts this year (some that fit her - not those big ones <adult size S> like last year) so I made you some also - she was thrilled that y'all got to match every day! She was very helpful to both me and Nanny in taking care of you. She also helped pick out your hair bow everyday and got really good at putting those on.

Overall, we had a great week and I can't wait until next year! By that time, you will be all over the place :)

Quick catch up - June 28

Whew! What a week we've had! I'll do a more thorough update tomorrow (I hope) but for now it will suffice to say that you now have a huge new family of EYL Camp members. The staff, volunteers and participants that got to meet you all fell in love and we're full of comments about how amazingly calm and patient you were! More about all that later, but for now - welcome to the EYL family (officially)!

We got home around 7:00 last night. Just in time to quickly get unpacked, get your room set up and get your bath taken care of before the night shift nurse got here. Then we were all getting ready to crash when he came downstairs and let us know your g-tube had come out. Nanny had said it felt a little loose that morning, but it came all the way out! I tested the little bubble that's supposed to keep it in place and it had a home in it. Not sure how, but it happens (very rarely). So last night, on about 4 hours of sleep from the night before, completely exhausted, I got to pm replace your g-tube for the first time. I had been shown and practiced before on the training doll, but that's not something you get to practice like the trach change because it's a much more sensitive track into your stomach. But we survived!

We were all still pretty lazy today but you were happy as can be, back in your room and HOME! On another exciting note: your tooth is FINALLY starting to break through! You were chewing on your burp tag today and when the nurse was tugging at it to play with you she said she felt it snag so she looked, and sure enough- it's just barely starting to poke through! Hopefully it won't take the long for all of them to push through.

Love you Baby Girl! It's sleep time for Mama now - 10 loads of laundry (and the thought of 3 more tomorrow) is enough to wear anyone out!

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Side note: here is a picture of the g-tube:

The balloon is actually inside you and is inflated by inserting 3-5 mL of water into the port. That's what holds the g-tube in place.

You're 6 Months Old!!! - June 20

We've made it halfway through the year...somehow!

I am so proud of all the progress you've made and the growth that everyone has seen in the month since you've been home. Your doctors are continually amazed at how different your prognosis is compared to when you were born.

Physically, you are so big now - I know babies grow a lot the first few months, but you've really taken off since you've been home.

You're finally wearing 3-6 month clothes (the regular 3 month clothes are a littttttle too tight now!) and are in size 3 diapers. 

When we went to get your feet casts redone, the PT was amazed because she has to use two rolls of plaster on each foot - the first set we made, one roll did both feet!!! 

The first set of hand splints were done when you were 10 days old, and the feet were done at 6 weeks; just a little bit of a difference!

You increased from 38mL per hour feedings to 56mL per hour your first week; now you're at 100mL per hour.

You were 6lb 15oz at birth; 13lb 13oz when you came home; now you're 15lb 3oz.

You are so curious about everything - when we're walking around the room you watch every move that we're making, usually with a look that let's us know whether we're doing things right or not.

You still love new people and already have the home nurses wrapped around your finger. You particularly love getting snuggles and kisses from whoever will give them to you! 

You still love playing with your toys, and have started examining them more now before you just shove them in your mouth (that one tooth still hasn't popped out yet) and this last week you've started cuddling up with your blankets whenever it's time to go to sleep. You're favorite has been a soft brown one, but that one had to get washed so we just grabbed a thinner pink one (Mama's Baby blanket) to use one night and the next morning you didn't want to let go of it! You pulled it back out of the nurses hands whenever she started to uncover you :)

This month you've met a lot of new people - We took a road trip with us to see Daddy's Grandmother and Grandad, you got to meet some of the people Mama used to work with and tomorrow we're headed out to meet your EYL family!

You continue to amaze us all; keep up the good work Baby Girl!

Road Trip! June 16

The last few days have been relatively quiet (compared to the usual days we have around here!) It's hard to believe we've been on a summer schedule for two weeks now!

Friday the 13th was a semi-busy day - we had appointments with all three therapists and they were all three thrilled with your progress! Other than that, we had a relaxed, playful day.

Saturday (May 14) marked one full month of you being home with us!!! We went to Papa and Mimi's house for Father's Day breakfast and you enjoyed getting out and the new scenery. Your cousins still aren't sure what to think of all your machines but they seemed a little less apprehensive this time. The middle one has learned how to say your name and it was so cute to hear!

Sunday (May 15th) was the first time the entire family got to go to worship together! Little Big was pretty disappointed she had to go to her own Bible class instead of getting to come help you in your class. You are doing so much better in class now - you love the songs and interaction, and watching the wild child in there with us who likes to bang stuff on the table... You and Mr. LK will be great friends soon enough; his family means a lot to Mama and Daddy and I'm glad y'all are close to the same age :) We also got our family picture updated for the directory!

We went out to lunch afterwards for Father's Day and you were a trooper - you were so sleepy but still didn't want to miss out on anything! We didn't have a nurse for the afternoon because they are finding us a new weekend nurse so Daddy kept an eye on you...meaning y'all both had a good Sunday afternoon nap :)

We have learned that we definitely need a bigger car - if we all want to go somewhere we have to take Daddy's truck and that doesn't do so well with all of your extras. Especially if it's raining since your chair has to go in the back.

Today we took a road trip to meet Daddy's grandparents and drop off the bigs for a few days. They love getting to spend their special time with Grandmother and Granddad and I'm so glad that they finally got to meet you! I didn't get to meet Granddad until after his health problems had set in, and I'm not sure he knows who exactly I am because he's only seen me a few times, but he knew who your sisters were! You did so good considering how long of a day we had. You took a decent nap on the way there and slept most of the way back, and then crashed about five minutes after you took a bath and were put in bed. Here are a few shots of the day:

Meeting Grandmother

With Grandmother, Granddad and Sisters

Soooooo sleepy from the trip!

This week should be relatively calm - the Bigs are gone until Thursday and we only have therapy appointments so no trips to San Antonio this week. But the most exciting thing of all: our new night nurse starts Tuesday!!! They finally found someone and she came to get oriented last Tuesday and Wednesday. This is one excited Mama!!!! Hopefully this will be my last 3:00 am post for quite a while :)

Appointment Updates - June 9-12

We've had a busy week of appointments, so here are a few highlights and updates:

1) Genetics appointment on Monday: lesson learned - call and confirm all your appointments. Apparently, we had this one on our list, but they didn't have us on their list. So we drove to San Antonio and rescheduled the appointment. Great start to the week.

2) Surgical appointment on Tuesday: called and confirmed. Glad I did because his follow up appointments aren't at the downtown, hospital office, they're on the northwest side of San Antonio! And of course as we were getting ready to walk out the door with plenty of time to get there, something happened - we're still not sure why, but you started coughing really bad and knocked some secretions loose that we weren't able to suction out so we had to do a quick emergency trach change and wait for you to calm down enough to get in the car. Fortunately, I had given us enough extra time to get there and there wasn't any traffic so we were only 15 minutes late. Dr. C said everything looks great! Your Gbutton is holding up really well, the site looks great, the scars from your diaphragm plication surgery are already starting to fade and we don't have to go back to see him for 6 months!

3) PT and OT on Wednesday were both THRILLED at how much you are progressing, especially with tummy time - we figured out how to do a modified tummy time on the hoppy pillow that you can actually stand. On Monday with the nurse you did five minutes, but on Wednesday with PT you did 10 minutes and still weren't getting upset! YAY! You are also starting to get the hang of rolling from back to side and side to back...not very fluid yet, but getting there.

4) ENT appointment on Thursday: First appointment in a long time that the doctor had to do more than look at you and say it all looks good! You still have a little bit of granuloma tissue on the outside of your trach stoma so the ENT put some more silver nitrate on it to help cauterize the tissue... and you were not happy with her at all. The silver nitrate didn't bother you too badly the first time we had to use it, but this time it did - you started crying (and set off all of your alarms) and it took quite a bit for me to get you to calm down. And then every time the ENT would say something you started crying again. You used to smile and laugh any time she came around, but today you cried every time you heard her voice after the silver nitrate. It was really sad and, as she said, a little heartbreaking to finally see something that caused you pain. You've been such a trooper with everything and haven't really ever shown any distress with anything - hopefully this is the last time we have to do that!

5) Other just for fun updates: We started putting more water in the bottom of your bathtub instead of just doing a sponge bath and you love splashing your feet! You've also started grabbing at the bowl that I use to rinse you off when we're done washing. You are a very good "helper" with your hands, unfortunately trach cleaning, bath time, suctioning and food trials aren't the best times to help. We started trying some tastes of purees like the ST suggested to get you ready for the swallow study on June 30. First, I just gave you the spoon to get used to it. You took it from me and shoved it in your mouth and didn't want to give it back - no problems there! So far we've tried apple sauce and mashed up bananas and you didn't seem to have a problem with either of them.

Over the last week or so you've started latching on to blankets, bibs, burp cloths, anything you can hold and suck on when you fall asleep (right now your favorite is the brown blanket my supervisor gave you) - but you also love playing peek-a-boo with them! It's funny to watch because if you can't pull the cloth down far enough, you'll start stretching your neck up to try and see over the top. One day, you wouldn't pull it down and then we realized you could see us out of the side of it and that was good enough for you!

Lastly, you're such a imitator! With one nurse, you started shaking your head no every time she said anything because she kept telling you "no, no" when you would play with your vent tubing. Then you started making kissy faces and noises whenever we would do it to you. Now, you've started making the most adorable squinty eye face because when your day nurse laughs her eyes squint up - and she laughs and smiles at you a lot! I tried getting a picture for the last couple of days and this is the best I could get:

That's all for now!

PICTURES!!! - June 6

The pictures are ready!

The link above is to the Facebook album - if you have trouble accessing it let me know and we'll see if we can come up with another solution!


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Correction: you can only see the pictures with the link above if you are already on Facebook.

So here are my top 10 shots - in no particular order!

Sign Aunt C had made for me!

And the cape and skirt

I really wanted to hold that sign!

After outfit change #3 you were pretty much done

Sophie helped make it better :)

Love the color of your eyes against that blanket!

In the Christmas dress Little Big picked out for you...so what if it's June!

Bits of reality

With all of your "extras" 

Princess socks from Nanny!

And a bonus picture:

This one is going to start our Sister wall of pictures!

Catching Up - May 29 - June 4

I'm sorry I'm sorry I'm sorry! I know it's been way too long since I've given everyone an update - things have been crazy busy (in a good way!) around here with the end of school for the Bigs, a few appointments for Baby Girl and still trying to figure out which way is up for Mama and Daddy on most days!

So let's backtrack some...

You gave Mama a bit of a scare one day: we've figured out that you don't do well when you're off of your humidified air for more than an hour or two (so long days of appointments in San Antonio are going to be an issue). The day after, your secretions are much thicker and harder to suction out of you. One morning after we dropped the bigs off at school you started coughing when we got home. I suctioned and didn't get anything out, you were still coughing. I tried putting some saline in to loosen it up, suctioned, you were still coughing. Tried suctioning a little deeper than normal to see if it was stuck at the base of the trach tube - nothing. The one thing the trach training nurse drilled in to us was "when in doubt, change the trach out" so Mama got to do an emergency trach change....alone. We still don't have a night nurse for Monday, Tuesday, Wednesday nights and the day nurse hadn't arrived yet. I was just finishing when she got to the house so she got to walk in to all of the alarms going off but you were a happy camper! You definitely had a pretty dry plug blocking your trach though so we've had to be careful the last few times you are off the humidity for more than two hours.

May (and school!) ended quite suddenly - we took a trip up to the school for Big Big's 5th grade clap out - all of the students, teachers and parents lined the hallways and clapped them out of the elementary school building for their last day - she's officially a middle schooler now!!! Little Big's exit wasn't so glamorous...we actually had to go back to the school about 15 minutes after we got home because she realized she left her jacket and her lunch box there in her hurry to get out. You seemed to enjoy the trip (except the heat that day!) and Big Big's teachers were glad to finally get to see you.

PT has got us working on some cross body exercises (touch right hand to left knee, left hand to right shoulder, etc) and gave us a few songs we can use to do that - and you love them. Whether it's the singing or the fun gestures, you light up whenever we start! We're still working on tummy time, sometimes you are ok with it (like today!) sometimes we barely lean you forward and you know what's coming and start getting upset (usually when the PT or OT are here to work with you...I don't think they believe us that you sometimes like it!) The OT is also working on some sideline exercise - and you've figured out how to roll over so that you're back on your back. You haven't quite figured out how to get back onto your side, but you're pretty close! Her main goal right now is to work a lot on your reaching and using your individual fingers to grab things. We can always count on you reaching for Sophie!

June 1 was an exciting day - your first time in Bible class! I thought since you enjoyed the singing so much you would like the cradle roll class. I think you were too busy taking it all in to know what was going on. Everyone was so excited to see you and you looked SO precious in the red dress that Little Big picked out for you - I was just glad it still fit!!! You made it through class, slept for about 20 minutes during the sermon and then stayed awake until about 5 minutes before we finished lunch at Garcias. Then you slept all the way home and most of the afternoon.

On June 3 you got new boots! The old ones were too tight around the top and leaving red marks because of your legs grew so quickly. The PT at the hospital was pretty excited to see you and you were your usual charming, smiling self! We made a trip up to the NICU for a VISIT - got to see Dr. G. and a lot of your nurses, and Big Big got to drop off the burp clothes she helped make / collect for her 4H leadership project. She collected a total of 48 burp clothes, and some of the nurses were already eyeballing certain prints to grab for their patients as they were looking :)

We also went for your first therapeutic feeding clinic visit and met the gastroenterologist, saw the dietician, one of the speech therapist and one of the PT/OT. The gastroenterologist said everything looks great, kept the feeding amounts the same (your weight gain was still going up, but not at such a fast pace so still no fortifying!) and he and ST want us to start slowly introducing you to the spoon so you can get used to it's shape with your mouth. Once you seem comfortable with that, they want us to start dipping it in liquids for flavor so you can work on tastes, and then slowly work you up to tiny amounts of puree to see how you handle that. Their concern is that if we don't slowly introduce them to you, then we're setting you up for failure at the swallow study by trying to introduce something completely new to you and expecting you to do your best. I gave you the spoon to play with tonight and this is the first thing you did:

Needless to say, I'm not too concerned with you adjusting to the shape of it being in your mouth. You chewed on that thing for about 15 minutes! 

You've got some awesome clothes that our good friend Mrs. J has been working on for you!!! She offered to work on any of the outfits you had to make them work better with your tubing and connectors and so I told her about the idea that Nanny and I had and showed her the dress we had found to use for a pattern...and how it had been sitting in your closet since Easter because let's face it: I'm not going to have the time to sit down, take it apart, make a pattern and get anything done with it! So she did. I sent it home with her after Little Big's birthday party on Saturday and she sent home a sample on Sunday - she was so excited to get to work on it and I was so excited to see it! I'll post better pictures at some point, but here is one of the outfits:

It's got buttons on the top of the sleeves so it's easier to get over your head and neck, a v-cut at the neck to give your vent tubing plenty of room, and that little pocket on the front is an access port for your g-tube. We wore one of the other ones she made to the appointments on Tuesday and it was SO nice to have direct access without having to unbuckle you fro your chair or carseat to unsnap your onesie and pull it halfway up to be able to connect your feeding extension - it was right there ready for us! I'm so excited to see the others that she makes!!!

Last bit of news: we finally got to take your "newborn" photos!!! Aunt C was so excited - she brought over her set up and we had so much fun! We got some shots with the Bigs that I can't wait to see and a lot of really good shots of you too. You weren't so sure about the whole picture thing at first, but after a little while you started sharing your sweet smile. Here's a quick sample - once they are ready, I'll post a link to the site to see more. I'm super excited to see the rest of them and get some prints to add you to our photo wall!!!

Aunt C had this sign made for you, and made you a cape, bow and skirt to go with the pink and purple superman outfit! Can't wait for the other pictures to show off the rest of the outfit! We wore you out pretty good with all the pictures and you took a nice, long afternoon nap. After bath time you were playing with Sophie while I went downstairs to wash some dishes and when I came back up, this is what I saw:

Goodnight sweet girl!