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!

Flashbacks - May 28

Today was kind of a surreal day for me. When you came home in March, two weeks later we had an appointment at 12:30 with the pulminologist. You didn't get to come home with me that day. You were really sick and, from what I've gathered listening and talking to everyone who treated you that day, we were really close to losing you that day. Your lungs just couldn't keep up anymore and you were re-admitted to the NICU.

Yesterday marked two weeks that you have been home. And we had an appointment with the pulminologist. At 12:30. They even put us in the same exam room as last time. The entire time all I could think was: You're coming back home with me. Things are night and day from what they were that day. You are healthy. You are thriving. You are growing. You are chunky. Everyone at the office who saw you that day commented on what a different baby you are today.

We got to see a few familiar faces - the trach training nurse who was so patient in helping me and Daddy learn everything we needed to know has had your appointment marked on her calendar since we were released because she couldn't wait to see you again. And she was instructed to take a full report back to the NICU when she returned...so many of the nurses there wanted to know how you're doing. When we were in the room waiting I said "I hear Dr. M. Are you ready to see her?" and you started shaking your head no...your latest trick :) A couple of the Respiratory Therapists who have worked with you over the last two months were there also and you smiled and played and talked to them all.

The dietician checked in with us and said you had lost a little weight, but not enough to be concerned about...it could be an difference in scale, you could have had on heavier clothes last week - that's how small of a difference it was - so they're going to keep you on milk only and keep an eye on things over the next few appointments we have at the clinic before anything gets changed again.

You didn't take a very long morning nap, didn't sleep long in the car, and were so tired by the time we got home that you actually cried. It kind of scared the nurse because you never get fussy like that and she said you were just laying in your rocker and just started crying, tears and everything, and just looked so sad! I came up and rocked you for a little bit and you crashed pretty quickly and got a two hour nap in before it was time for bath and bed. You've been sound asleep ever since then!

It was so good to see familiar faces today, but mostly it was so good to see that they were all in agreement with how amazingly well you're doing since you've been home. You still have such a fan club cheering for you and checking in on you - you've touched so many people in such a short amount of time!

Love you Baby Girl!

What a Weekend! May 24/25

We had a super busy weekend!

Saturday was Little Big's birthday and we brought you downstairs for part of it. You loved seeing sooo many people but it completely wore you out! You took a long afternoon nap and after dinner spent some time with Uncle B and Aunt K (the ones who gave you Sophie!) It was absolutely precious to watch them play with you before bath time!

Sunday was a little more calm. You spent some more time with Nanny and Grandpa before they went home and got some recliner time with both sisters.

You must have gotten some really good sleep last night because you were FULL of energy and smiles from morning until bed time today! Nanny got each of you an Oragami Owl piece of jewelry and the little bracelet was so tiny!!!  You liked it because it rattled when you moved your hand :)

Friday Fun - May 23

I didn't get around to posting yesterday because I was WAY more interested in getting to sleep in my bed instead of the chair in your room last night...but we did have an exciting day!

A really good friend of mine that I used to work with FINALLY got to come meet you! She has been waiting OH so patiently for the last five months; we've had to cancel our visits with her two or three times!

We're working our way through your 3 month outfits before you can't wear any of them...some of them are starting to get tight and some of them you haven't worn at all! Here's one that your great aunt got you:

And here's some video fun to cover the rest of Thursday and Friday:

We were doing some modified tummy time up on the hoppy since your legs don't straighten out, and you've got vent tubes and feeding tubes in the way and you started rocking forward on your knees like you were trying to take off!

The first time we did tummy time yesterday you did not like it at all - you did better the second time (which was the video above.) We also tried the speaking valve again when you were off of the vent for your "vent sprint" and you weren't too happy about that either. You did better today, but it's going to take awhile to get used to that. Anyway, yesterday you spent about 15 minutes telling us all about how unhappy you were!

So about a month ago you started trying to hold your mouth shut more, but yesterday you were actually sucking on your bottom lip and then you started doing this:

Today I finally found your second rattle so we strapped one to each arm and you were going to town with your left arm. I moved the other rattle to your foot after a bit because you had them going pretty good too, but then it started making a new noise and you weren't sure what to think about it. You kept watching your foot when you moved it trying to figure out why it sounded like that!

You are doing so well being home - you are growing and getting stronger every day. You love playing with your toys and talking to your sisters. We're getting in some more floor time to play and you really enjoy that change in scenery. We take you off the vent every day for your vent sprints to help build your lung strength and you are doing fantastic - I can't wait for the pulminologist to see our records next week! Keep up the good work and you won't need the vent at all much longer!

Appointments and Updates - May 21(ish)

Yes, this post is being written at 3:00 am... They have not been able to find a night nurse that can work during the week so you get Nurse Mommy on Monday - Wednesday until they do. (And everyone else gets Zombie Mommy during the day...we're all still alive though!) The weekend night nurse has graciously agreed to work Thursdays (on overtime pay I'm sure) as well as the usual Friday-Sunday nights. This week, I am especially grateful for night nurses!

Anyway, your appointments this week went really well! The pediatrician was pleased with your progress and that you seem to be so much more relaxed. We went to the Developmental Clinic yesterday and saw the developmental specialist, speech therapist, physical therapist and dietician - it was good to see some familiar faces (the clinic is part of the hospital) but also really weird to be back! The developmental specialist said everything looked like it was going well. There was a hiccup in the paperwork for your stroller but they are getting that taken care of. It was submitted with a bunch of other approval requests that all have to be repeated atter six months and Medicaid denied the chair if it was only going to be used for six months. Sigh. Yay for paperwork misunderstandings. 

The speech therapist wants us to start trying the speaking valve again when you are doing your one hour "sprints" off of the ventilator support. It will help you start working your vocal chords more but will also help with the pressure needed to swallow properly. You're scheduled to go in for a swallow study June 30 so between now and then we really need to be working on your oral motor skills and swallow ability. You do fairly well with controlling your saliva (not counting the excess drool that comes with any testing baby) but they don't know if you will be able to handle much more than that so time to get to work! The swallow study will help us decide when / if we can start introducing any purée foods into your diet or even attempting bottle feeds.

We didn't get to see our regular PT because she was out today so I was kind of disappointed about that, but we will hopefully get to see her next week when we go in for the pulminology visit because you need some new feet splints. Your legs are too chubby at the top of them now...and they stink. The PT we did see showed us how to do a modified tummy time exercise to start working in that muscle group again and wants us to start doing that five times a day for as long as you will tolerate it (hopefully 5-10 minutes each round...) as well as continue your stretches. Overall, you are doing a lot better than before with your reaching, stretching, strength stuff.

Lastly, the dietician said you have gained an average of 80 grams a day since about a week before discharge. Normal weight gain for a 5 month old is 10-15. WOW. They kept you on the excess calories to go home just to make sure you had enough energy to make the transition and get settled in but now they want to back off of that and see how you do on just breast milk. Up to this point I've been having to fortify your milk with formula so that it was 24 calories an ounce, regular breast milk averages about 20 calories so it's a pretty big cut but I'm glad to not have to use formula anymore! They'll check your weight again next week to make sure that progress doesn't nosedive. You went from the 35th percentile in weight to the 50th!

Keep up the good work! Hopefully next week's pulminology appointment goes just as well as the developmental appointment!

Happy 5 Months- May 20

How is it possible that I'm already writing 5 months?? HOW?

You have been such a joyful baby - you absolutely love everyone you meet. You love attention and smile pretty much every time a new face appears.

This month you have truly blossomed - you've started interacting more with your toys; Sophie is still your favorite but you have also taken a liking to the lion / blanket thing with all the ribbon tags around the edges because you can 1) chew on them and 2) grasp hold of it really easily. You've started kicking and waving your arms around like crazy when you get excited...I tried to video it tonight but the room was too dark - right after you fell asleep you must have been dreaming about running or swimming or something because your legs were still going 90 miles an hour! The pediatrician today even made a comment about how much more limber you are since the last time she saw you. You've also started trying to talk! Even just in the last couple of days it's gotten much more clear when you are trying to get something out using your voice. Of course, you also have a million and a half facial expressions that you are still making use of.

Although the tracheotomy has made our lives so much more complex, it was definitely the right decision for you. You have grown so much in the last month because your body isn't having to use all of those extra calories just trying to breath. At the doctor's office today you weighed in at 15 pounds 1 ounce! It is also very evident just in watching you that you are much more comfortable and relaxed, you don't struggle nearly as much just to keep up with little things like staying awake for more than an hour at a time :)

I love you so much and am so glad to finally have you home with the rest of our family. I can't wait to see you continue to progress and catch up as you get stronger each day.

Sleep well Baby Girl!

Annnnnd.....she's out!