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!

The New "Normal" - May 19

We are slowly but surely working our way into a routine that allows for enough time to get everything taken care of!

Mondays will be our "fresh start" day - we change out equipment parts, tubing, sensors, filters, canisters, etc. Today was our first trach change at home and everyone survived! Got all of the supplies restocked for the week and made sure we were ready to go!

We've set aside some time for you to come downstairs and be with the family so every day when sisters and Daddy come home you are ready and waiting for some attention! You got some one on one (plus nurse) time with each of your sisters today so that was neat to see. Little Big actually (politely) kicked me out of your room because she "needed to talk to you about important stuff".

We didn't make it out for a walk today, but we'll make up for it by going on an outing tomorrow and Wednesday - we've got a pediatrician appointment tomorrow and an appointment at the High Risk Infant Clinic in San Antonio on Wednesday. Busy, busy week! 

Tonight they weren't able to schedule anyone to work (still working out the kinks in scheduling) so Mama is on her own! Sleep good and don't give me any trouble please :)

Video Fun

We move you downstairs this morning to hang out for a little while so that Grandpa and I could put a dimmer switch on the lights in your room. You still love being downstairs, but you got sleepy pretty quickly since you had been awake since about 7! You refused to go to sleep though, and were fighting it SO hard!

Then you started talking to Nanny again...trying to get out of sleeping still...

A little while later, Nanny got some of your conversation recorded:

Technically, you should not be able to get any sound out at all because the trach is positioned below the vocal chords so the air goes in and out without passing over the chords. You've got such a large "leak" from your mouth being open most of the time that they have to accommodate that with some extra pressure from the vent so if you are positioned just right or holding your mouth more closed than usual some of that extra pressure will go up over your vocal chords allowing you to "talk". It's pretty neat to hear after so much time without hearing anything from you!

When sisters got home this evening we went for another walk and stopped by to see Aunt C and the boys (and the dogs). Then they got to help with bath time and getting ready for bed. It's so good to finally have our whole family under one roof!