Exciting Day! April 30

Today was a pretty exciting day! We got switched over to the home ventilator AND they came and measured for the Kid Kart AND you got to use your new swing!

When I got there this morning the nurse said you woke up at about 4:00 this morning and wouldn't go back to sleep, so they put you in your swing and you finally fell back asleep around 7:00...after all the excitement of the shift change of course! She also said that they put you in it yesterday at about 3:00 pm and that you just sat and watched everyone walking by (and stopping to talk to you) and smiled and kicked away until about 6:00 when you finally started getting sleepy eyes. But every time someone would walk by you'd perk back up in case you were going to miss something!

You're tolerating the big bows much better also :)

The goal with switching over to the home ventilator is that you wouldn't notice a difference in the support...but since they have different settings and parameters, and are not really meant for people as small as you are, it's not quite that simple. But after about 30 minutes of adjusting and testing and switching around and number crunching, we think it's finally about equivalent to what you were getting before - and it's much lower settings than they were anticipating. This is day three with NO OXYGEN and both Dr. G and the Pulminologist are thrilled with how well you're handling it. They didn't want to push too much today so you will stay on the vent only for 24 hours, then we'll go back to trach collar when you're wide awake and vent when you're asleep and see how that goes.

Watching your new toy after we made the vent switch - it moves, has lights AND sound! PERFECT!

I'm super excited about the Kid Kart!!! Here's the one that we're getting - they came and measured how long your torso is, your legs from the knee up and then from the knee down. The seat will be built to fit you now, but also to adjust for the next year or so before we might have to get a new one. These strollers are made by a wheelchair company, but designed to have the conveniences of modern strollers. It will have brackets on the back that fit with the vent we're going home with, it has a solid tray on the bottom for anything else we'll need, it will have an oxygen tank holder (just in case) and an IV pole for feeding bags. It will take a few weeks for it to come in, but they are bringing the loaner stroller early next week for us to work with mobility training and to bring home until your's comes in. Ignore the price on the page - I had a heart attack when I saw it first too, but that's something that SSI covers! BLESSING!

We spent some more time playing with your toys - you are much more interactive with them (when no one is around) and the PTs were thrilled when I showed them the video of you playing with the spinner the other day. Sophie continues to be the one you tolerate the most... when I sat her on your chest this afternoon you put both hands on top of her and looked up at me like you were saying "MINE!" Then you started trying to chew her face off until she fell down too far and you couldn't get her back to your mouth.

Play away Baby Girl!

Baby Steps forward - April 29

So I couldn't take pictures of the old trach...because it's gone (duh Mama!) but here are the product pics from their website:

Flextend - extends beyond the wings that hold the trach ties so that it's easier to access for suctioning and easier to clean around the wings:

Standard - sits more flush against the neck (no extra length beyond the wings):

The standard is a little more difficult to take care of and keep clean since your neck is already so small, but when has anything been easy with you?? The other problem with the standard is that when you're attached to the vent, the tubes pull the trach off center (look at the picture below) which pulls at the edge of your stoma and irritates it. With the flextend it gives us more room to situate the tubing and make it more comfortable. We talked Friday about ordering you a custom trach that's the right length on the inside, the right diameter and has the flextend - because right now (surprise, surprise) they don't make one with your specifications. Sigh.

Then this morning Dr. G said if it was ok with trach nurse and ENT she wanted the flextend back, and we'll just see how the length that we have does - so we switched it out again. Three trach changes in two days! Tomorrow the pulminologist wants to do a bronchoscopy again just to make sure everything is ok and (hopefully) put you on the smaller ventilator that we'll be going home with to start doing some trial runs. The trach care nurse wants to start doing some mobility training (aka getting you in a stroller with all of your stuff and walking around the unit) to figure out how everything will work best when we're out and about. ALSO - tomorrow the medical stroller company rep is going to come bring us a loaner stroller and measure you for yours so we can get that ball rolling! Depending on when you get to come home again, we might go home with the loaner while they finish up yours but at least that's moving forward! There are two different styles that I'll get to choose from - I got to see one yesterday and it was pretty snazzy! 

We turned your bed around so that the ventilator tubing is coming up from the bottom instead of over the top so that 1) it's not pulling as much on your trach and 2) you can get your right hand up to your mouth because you have not liked not having access to it! It's amazing how much one little change can completely turn your world around! You went crazy with the happy kicking - constant for about 15 minutes! 

So things are slowly starting to move forward again - you're doing great on room air (21% oxygen) so everyone is fairly confident that we'll be going home without oxygen; we're talking again about equipment testing for home care; the next step is just waiting for it to all come together and we can bust out of here!!! 

Patience, Mama - patience!

MRI Results - April 28

SURPRISE! The MRI didn't tell us anything useful. Well, not related to the sleep study anyway. Sigh.

What it did show was:

1) her brain stem is clean and clear from top to bottom;

2) her brain matter is equal and functioning fine on both sides;

3) there is a large subdural hygroma (fluid build up) on the left frontal cortex (approximately the front half of the brain) but it isn't causing any pressure or causing any other problems. It adds one more outpatient visit with a neurologist to keep an eye on it as she grows - but it doesn't give us any information.

We had a fun morning getting ready for the MRI - it included two trach changes (I took one out and put the other in). We also switched the type of trach we put back in - before she had what's called a "flextend" trach that added about 2-2.5" outside so that her chin wasn't rubbing against the trach. The ENT thinks that extra weight might have contributed to the issues on Friday by causing it to hang down more on the outside and causing the inside piece to not sit properly. So the trach we put back in is a "standard" trach so we can see if that makes a difference. I will post pictures of the two trachs tomorrow see you can see the difference.

They gave her one dose of a sedative before they took her to the MRI so that she would be calm and still - it didn't phase her at all. They gave her another dose when they got down there....nothing. She did lay nice and (mostly) still though so there were no issues with the images.

Play Time - April 27

The nurse was putting you in your tumble form chair when I got there this morning and you were pretty excited with all the people that you could see and watch from the floor! We played with the toy giraffe from Uncle B and Aunt K...you tolerate that one the most. The ST would really like to see you start putting something other than your hands in your mouth for a variety of textures and to get you used to moving your tongue around different shapes and sizes but you're not as interested in that as she is. You can almost get your hands all the way around Sophie's leg though so you don't immediately drop it when we let go like with other toys.

You were pretty sneezy this morning - but it made for some cute pictures :)

You got a good nap in over lunch and then we played a little bit more - you figured out how to work your spinning toy - and then you were falling back asleep when it was time for me to leave.

Tomorrow should be an interesting day - you've got your MRI in the morning so we have to do a trach change (your regular trach doesn't work with MRI machines); we have to explain what happened on Friday to Dr. G and figure out what we're going to do about it; and get a new plan going to get out of here!

Easter Pictures!

Here are a few of our favorites from the Easter picture session with Nanny:

One of the few of you actually looking at the camera...but definitely not smiling!

Eh...a little bit of a smile, you still weren't sure about this whole photo session thing!

You were more interested in showing Nanny how both fists really CAN fit in there at once!

This one is my favorite!

Back to chewing on those hands!

This was close to the end when you started being a little stinker...

Annnnnnd we're done!

Not bad for using the PT support chair and really bad hospital lighting :)

Hey look, another parade! - April 26

Dr. P and the nurse both said you had a great night as soon as we came in today. They kept a close eye on you last night and said there were a couple of times you would start coughing / gagging again but it wasn't nearly as intense or as often as yesterday - it didn't even wake you up! There did seen to be something still bothering you today though so not sure if that's just left over irritation or if the trach is still rubbing... We'll find out Monday!

Other than not liking the ventilator tubes being in the way of your hands, you were super happy and energetic today - kicking your feet all over the place and waving your arms. You were really happy to see Daddy and just kept staring at him for about five minutes when we first got there.

We had to leave a little earlier than usual for a Saturday because tonight in another parade and we didn't want to get stuck in the parking lot! Sleep well Baby Girl - we love you!

You had a pretty rough time waking up this morning...it took you about 10 minutes of stretching and kicking before you decided to finally wake up :)

Fiesta Friday - April 25

Let me just start off by saying that I love parades - really I do. But whoever planned the Fiesta Parade route needs to be shot in the foot. Whatever made you think it was a good idea to cut off a hospital entrance for a parade??? And whoever decided to allow the school buses to park on the other side of the hospital needs to shot too. Now that that's out of the way...

We've had an eventful Friday! When I got to the hospital, Baby Girl was awake and off the ventilator - YAY! Dr. G decided instead of being on the ventilator continuously this weekend, she wanted it only when you were sleeping. That was the initial plan / proposal anyway: ventilator when sleeping to help give your lungs support and minimal assistance during the day. So yesterday's plan was out the window by this morning: trach collar when awake on the lowest possible oxygen level and ventilator when asleep with the lowest settings needed to still give you a good break. She also changed the breathing treatments to be as needed - you were getting them every 12 hours but weren't having any issues so she changed that up too. 

Then at about 8:30 you started coughing a little - you were sounding wheezy so we called the RT and we went ahead and gave you your breathing treatment. You kept coughing, but it turned into more of a gagging cough. I suctioned you a few times but nothing was coming out and you had this look in your eyes like "something is wrong". I wish you could use words, but am SO glad you speak so clearly with your eyes!

We called RT back and she wasn't sure what to do so she called the trach nurse who suggested we do the normal trach care so she could see if it looked like anything trach related. We couldn't see anything out of the ordinary, but she said your breathing sounded a little diminished on the left side so they ordered a chest x-ray to look at your lungs. Nothing there. They called ENT but she was off today and didn't answer; the ENT on call said: keep an eye on her until Monday. Thanks. Then your ENT called back, we gave her the run down and she said she'd be in as soon as possible!

This is where the whole parade thing comes in to play. DOCTORS NEED TO BE ABLE TO GET TO HOSPITALS!!!! You were extremely irritated at this point and couldn't stop coughing / gagging. The trach nurse and RT put you back on the ventilator and that seemed to help some but not completely. When ENT got here (sorry to the police man directing traffic she almost ran over - you really shouldn't stand in the middle of a hospital entrance) she did a bronchoscopy (small camera into her airway to see everything) but didn't notice anything out of the ordinary. She looked at the x-ray and noticed that the trach tube looked a little off.

For whatever reason (surprise, surprise - you're doing something no one can explain) the size of the trach tube is all of a sudden too small and instead of curving down like it's supposed to, was just sticking on the back of your airway. So when you breathed too deeply, or moved your head, or when we were doing the trach care and shifting it around it was just rubbing and rubbing and rubbing on your airway :(

So after several attempts, they got a larger trach tube (bigger diameter and longer) in, got an x-ray and seem happier with how it looks. And you were back to your happy, smiling, cheerful self within five minutes. You loved all the attention around your bed, but when I was finally able to come back over there I took your hand and you would not let go. You kept looking at me until you finally fell asleep - exhausted from all the craziness and not getting a morning nap because you kept waking yourself up coughing.

That was all between 8:30 and 2:30. And I'm drained. You certainly like to keep everyone around here on their toes!

In other news, Dr. G wants to do an MRI on Monday of your brain and brain stem. We've never done one of those and she wants to see if maybe they were getting some false positives on the sleep study, or if anything else is going on with your brain that could cause the sleep study to read so differently than your normal sleep habits. You didn't have any problem adjusting to quiet and dark when you were home for two weeks so they don't think that's as big of a factor; you slept, just had a lot of episodes. So more investigating is being done as to why it was such an "off" night. 

Hopefully we'll have a much more quiet, restful weekend and we'll see what Monday brings!

Confusing?? - April 24

"So the sleep study results are...confusing." That's almost as fun to hear as "inconclusive".

Here's what they gathered from the study:

During the sleep study you had "significant apnic events and desaturations" with just the trach collar. But you've not had them in the NICU since the tracheotomy. They tried putting you on CPAP and on BiPAP (read about the difference here) and there were still several concerning episodes. Which hasn't happened in the NICU. So why are they happening in one place and not the other? They don't know.

The more important question is why you're having the events to start with: are you not able to take a deep enough breath because of lung capacity issues or because you aren't able to fully expel the last breath, causing your breaths to get more and more shallow. To (hopefully) figure out which it is, they've put you back on the ventilator for the weekend. You're on the lowest settings you can be for both pressure and oxygen and they're going to play with the levels of both over the weekend to see which you respond to best with adjustments. Worst case scenario: they don't figure anything out and you go home with oxygen and either the ventilator/CPAP/BiPAP for support while you're sleeping and/or 24/7 (I vote no for that option). Best case scenario: they're able to completely wean you off of the oxygen and any needed pressure support because you perform fabulously while you're in the NICU. 

We shall see.

You weren't too thrilled with going back on the ventilator. The RT said when she came and started messing with the set up and hooking everything back up you got a real nervous look in your eyes and started moving your hands around and then tucked them in close under your neck. When I got back after they had you all set up you were holding your hands like you had been nervously wringing them and looked at me like "what's going on? Why is that thing back???"

Sorry Baby Girl. Let's have a good weekend and get rid of it, ok?

In other news: I put a tube in your throat today and didn't freak out (externally) about it! The trach change went well - and we plan to do one next week on Monday and Wednesday for practicing purposes. And next Saturday, Daddy will be at the hospital to get some basic training on suctioning, trach CPR and to watch us change the trach out so that he at least knows how the process goes.

PT and ST came and played with you and you loved the attention...as usual! You smiled and wiggled around and started kicking your legs when they were talking to you and working with you. Tomorrow we'll work with the speaking valve again - I'm excited to get to hear you!

That's all for now. Still no real results and still no plan or timeline for discharge. Tomorrow is a new day and we've got big plans, as long as I can get through the Fiesta Parade traffic!

Shots and Smiles - April 23

Not much to report on today. You had your sleep study last night but we won't get any results until tomorrow at the earliest, probably Friday realistically.

You got your four month shots today and took it like a champ! You cried when they stuck you, but this was you about 30 seconds later:

You're such a good natured, happy baby! 

I worked with the trach nurse and the practice doll to prepare for the trach change tomorrow - I'll actually be inserting the trach this time and am a little anxious about it. Hopefully I'll get a smile when I'm done :)

Making Progress - April 22

I didn't make it to the hospital today - I spent the day chaperoning Little Big's field trip! When I called over to check up in you the nurse said you were an absolute angel!

You had a busy morning with PT and ST - and then spent some time working with ST and the trach nurse using your speaking valve. She said the trach nurse was thrilled with how well you tolerated it for your first time and is excited to keep working with it. The speaking valve works by turning the trach into a one-way tube. Normally you would be breathing in and out of the trach, which means air is never reaching the vocal chords with enough force to cause them to vibrate. The speaking valve doesn't allow air back out the trach; it is forced up the throat and past the vocal chords, allowing for vibration. I'm not sure what it means that you tolerated it really well since I wasn't there, but apparently you did great! Dr. G and I were curious to see how it would go since you weren't really making any noise before anyway. Hopefully we'll do some more work tomorrow.

After all the work was done they put you back up in your big chair and the nurse said between the PT and about 10 minutes of watching and smiling you were worn out so she laid you down and you went right to sleep and took a nice long nap. 

Everything is still on track for the sleep study and I'm praying you sleep as well as you have been so we can hopefully go home with as little new equipment as possible - our room is getting a little crowded! So far we're adding a suction machine and humidifier, but if we can get rid of the oxygen then that would be great. You've been sitting comfortably between 21% (room air) and 23% (about what you went home on last time) for the last week so we'll see what they think.

Hopefully, by the end of the week we'll have everything ordered and you'll be moved into a separated room so that I can come and room in with you, spend at least one night and two days doing all of your care and then they'll let us go! No definite timeline yet, but we're moving forward!

Sleep well Baby Girl - I'll see you in the morning!

Trach change #1 - April 21

Today was Mama's first trach change - and you didn't like it much at all! I just pulled this one out and the trach nurse out the new one in; Thursday she'll take it out and I'll replace it. At home, they have to be replaced and cleaned every 7-10 days.

The blue tube in all the pictures lately has been provided heated, humidified air to help keep the secretions from Baby Girl's trach thin to help avoid clots. Today they switched her to a cooler humidified air to see how well she tolerates it since her secretions aren't as much as the first week and she doesn't have to be suctioned as much. The secretions will continue decreasing for a bit until her body adjusts to the trach. The nurse said the feeling of the trach is like having an itch in the back of your throat that you can't get rid of - your body will continue producing saliva and sending the signal that it needs to be cleared out until it adjusts. Next week we'll do the change on Monday, Wednesday and Friday so that I have enough opportunities to practice and get comfortable with it.

Tomorrow ST and the trach nurse are going to test out the artificial nose and the speaking valve to see how well that goes. I won't be there for it; I'm chaperoning Little Big's field trip. Tomorrow night is the sleep study and that will determine a lot of things - including how soon we get to go home!

We found out over the weekend we were approved for disability assistance from Social Security so that opens up a lot of options for us to get supplies and equipment we would have been limited on previously - including a stroller that's designed and intended to provide support for babies who have physical limitations and lot of equipment (oxygen tank, portable suction, feeding tube stuff, etc). It will be tailored to her specific needs and built to support her! Pretty excited about that!

Hope everyone has a great Monday!

Happy 4 Months! - April 20

Happy 4 Months Baby Girl and welcome to our new space! Every 4 month old gets a blog right?? I decided to give the blog a clean start so that I could go back to writing about other things on my blog like I used to, without making everyone who wants to know how Baby Girl is doing weed through posts. I also want to use this space to chronicle Baby Girl's life in one dedicated space so that when she is older she will know what a headache she was as a baby :) (Just kidding future Baby Girl - you were and still are a blessing in all of our lives and we love you very much!!!)

So: Happy 4 Months! Here are four brief recap points of what has happened up to this point -

1) You were born (duh.) To read about some of the things that we went through around that time, read this post, this post and this post. That pretty much sums up the first few days of your life, and the months leading up to it!

2) You have had 3 major surgeries: there was the diaphragm plication first, then the g-tube and fundoplication surgery, and lastly the tracheotomy. There were a few bumps along the road to recovery, but you pulled through them all!

3) You got to spend the most amazing 2 weeks at HOME (well, amazing until the last day...)

4) You've spent every holiday in the hospital since you were born.

Christmas:

Hanging out with Daddy Christmas Eve

In Mama's first Christmas Dress 

My First Christmas

Our first family photo! Merry Christmas!

New Year wasn't as exciting - you did a lot of sleeping, but I did get the first picture of you smiling :)

I might have gone overboard on Valentine's Day fun with a heart outfit for every day that week...but Big Big gets some of the credit / blame for helping me pick them out!

And that's nothing compared to Nanny's spring break fun:

You came home on St. Patrick's Day but you were in the hospital for half of it...and I didn't put a lick of green on you!

Most recently, Happy Easter! Nanny and I went shopping to find you a cute Easter dress for your first Easter, but Daddy is actually the one who picked this out!

You were a little bit of a stinker and wouldn't smile AT ALL for Nanny...until she put her camera down. But you made sure to let us know when you were tired of picture taking -

You're back in the hospital for now, getting stronger, smiling, being the (nosy) social butterfly that all of the nurses love and getting better so that you can come home for good - We're just waiting on your sleep study next Tuesday so we can get everything straightened out. Meanwhile, Mama is pulling her hair out thinking about everything that she has to learn to take care of you! But every bit of the stress and heartache and every tear will be worth it when we get to bring you back to where you belong! 

We love you Baby Girl - Daddy, Big Big, Little Big and I are ready for our family to be back together, but we want it to be when you're recovered and healthy and ready so we'll be patient!