Shades

Ok...so she wanted these, and we just couldn't say no (you're right,
Jenene).

Out shopping

"Nahh...not my color."

8 months old

And growing strong. Alex is making up for lost time in the hospital and learning new things everyday. She is becoming more aware of her hands, her surroundings, and her voice. She's making new sounds and we have the most interesting conversations with her lately. I gave her a bath the other night and she talked the entire bath and then some. She loves to play around with mommy and daddy and does the cutest things. Her new thing is to throw her hands in the air. Daddy tells her "I'm gonna get you" and she raises both hands, closes her eyes and waits for him to tickle her. I'm not sure who gets more excited, mommy and daddy or Alex :)

It's oddly a quiet week for us and Alex has no appointments. We have the spina bifida clinic coming up in about a month along with another sleep study and a visit to the Children's Pulmonary clinic. Alex's appointments have been scheduled a few weeks out as sometimes after a surgery involving the spine, the body can go into a state called spinal shock. It can take a couple of months to return to a new baseline.

Our baby girl has been spending lots of time on her tummy, in her bumbo chair and doing different exercises to improve her neck strength and trunk control. She also started back to daycare this week and we are working on getting in-home OT and PT set up again. Guess we manage to stay busy one way or another. We are ok with that and thank God for all of our blessings.

Love to all,
The Diffees

Beautiful weekend

Sorry we haven't much to post. We had a busy weekend of getting back to normal, and enjoying the beautiful weather while it lasts. Alex is doing great - she's been smiling and giggling more and more. Such a happy girl. She's still on the oxygen, but we had to take it off for picture time so you can see how beautiful her face is without all that plastic covering it.

One big happy family

Alex is loving being home again and doing really well. The thickened formula has helped so much with her coordination when she drinks her bottle -it's like we're feeding a different child. Our hope is that she is no longer aspirating with the thickened feeds and her lungs continue to recover from the RSV so that we can get her off the oxygen. She's a pro at pulling it off, chewing on it, and taking it out of her nose.

The angel is sleeping through the night without making a peep. She's has been smiling and laughing and just being her happy self. We've once again established a routine - nothing strict because we're a pretty laid back family - but one that involves a couple of naps, a bath or two, and lots of playtime.

We are so thankful for all of our faithful followers, offers of help, and prayers. We'll let you know if we need anything. We are looking forward to the weekend and enjoying the beautiful weather.

Blubbers

Alex is learning new things every day. I took a bath video today, although you'll have to look at it sideways but it's worth it.

Hanging out at home

Things are settling down for us and we are having fun just hanging out at home. Alex's follow up appointment this morning went well and nana watched her while mommy and daddy went to work. Alex got a full blown bath tonight and shortly after putting her in a favorite pair of pajamas, we realized they were way too small. I had to hold back tears- it must be a mom thing because I feel like our baby girl is growing too fast = |

Love to all,
The Diffees

Home again and busy

Alex was a happy baby this morning and spent most of her day with nana. The adults woke up to no coffee - it really hit us this morning how long Alex had been in the hospital and how bad we needed to go to the store. Mommy started off the day at our pharmacy only to be told they couldn't fill any of Alex's prescriptions. Jimmy and I both had to work so late afternoon I trekked out to Children's to once again try and get Alex's prescriptions filled. Luckily they were able to help me out. I also had to stop and get some new bottles for Alex since the bottle system we use at home does not work with the thickened formula. Of course they didn't have the special nipples we needed. We did get sent home with one bottle so at least we have that to get by. I then headed to another store to pick up the thickener (and some groceries) and finally made it home.

Alex has a follow up appointment with her PCP in the morning and we are headed off to bed. Sorry we don't have any new pics to post. We haven't even unpacked the camera from the hospital yet. It's been a whirlwind coming back home and trying to get appointments set up, supplies ordered, etc.

Thanks for checking in on us and we'll post some new pics soon.

Love,
The Diffees

A great night of sleep

She slept the entirenight without a peep. I think she's glad to be home.

Finally heading home!

:)

We are being discharged tonight

We are super excited our baby girl is coming home. The docs are working on scheduling all of her follow up appointments, first one being Wednesday morning. We don't have to worry about her going home with the feeding tube because she decided to pull it out this morning. So feisty. They also removed her PICC line today. She will go home on oxygen (not surprising) but will hopefully be weaned off of it soon.

Alex had a dog visit today from Gia who is part of the perscription pet program. Gia walked in and sat in front of Alex's chair waiting to be petted. Alex just stared at Gia (it was so funny to watch) and mommy had to step in and pet the dog for her. At least we got a cute pic :)

Homeward bound

We had an awesome weekend and looks like it may be the last one we spend here! Alex is doing so much better and eating and breathing beautifully. Her O2 requirement is low (hopefully will just go away soon) and she's managing to get most of her bottles down on her own. If she fatigues towards the end then they just give her the rest of the formula through the tube. She has her days and nights figured out and is sleeping well at night. She is so ready to come home.

Alex had grandmas, nanas, aunties, uncles, cousins and of course mommy and daddy here this weekend to keep her entertained. The only thing keeping us here at this point is special ordering the formula thickener for home. Docs tell us she should be discharged Monday or Tuesday. Words cannot express how happy we are :)

I love my ba ba

Alex chugged down a 4 oz bottle today for lunch! The thickened formula was no challenge for our big girl and she drank it down like a pro. She had a sponge bath today and is hanging out

with mommy, grandma and her nana who came all the way from Tulsa to visit with us for a couple of weeks.

Alex was weaned off the forced air yesterday and continues to be weaned down on regular air. Making progress :)

Swallow study

There's good news and bad news. During the study Alex was given small amounts of chalky liquids and solids that showed up on x-ray. The study showed that formula has been getting into her lungs on most of her swallows. They think this has been happening for quite some time. This aspiration causes her lungs to be irritated and inflamed and may be contributing to her oxygen requirements and wheezing.

The good news is that they added a thickening agent (similar to honey) to her liquids and she did not aspirate. So, they've ordered the "honey" consistency and we should be able to start feeding her from her bottle soon. Our big girl is making big steps. We thank God for this outcome and feel grateful we've found a safe way to bottle feed our baby. Our prayers still go out to our little friend Autumn (with spina bifida) who wasn't so fortunate with her swallow study this week.

Thanks to all of our faithful prayer warriors :)

Fat n sassy

Alex seems to be doing better with her bottle feeding today. She ate
almost 2 oz and is a happy girl. They decided for sure to have the
swallow study today at 2, so pls pray hard for her that it goes well.

Alex gets a sponge bath

Today has been a pretty good day

We have sunlight shining into our room and Alex is peacefully napping. She had two more opportunities this morning to practice eating with her bottle. It's amazing to see her progress each session, even if it's just the littlest improvement. We are so proud of her. It really takes so much energy and work for her to do the simplest of tasks. Plus, you don't exactly get the best rest around here. Isn't there some type of saying that you get well in the hospital and rest when you get home? Not sure if I just overheard a nurse say that once or if I just made it up but regardless, it's true.

Alex has seemed to hit a plateau of sorts and is stumping the docs once again. Overnight her O2 was increased slightly and she had a borderline fever. When the docs mentioned to me that maybe she has another viral infection, I about fall out of my chair. Not only is the mucus making itself at home in casa de Alex, but feels like we might be taking up permanent residence here in this hospital room.

Alex is doing fine today, no fever and her x-ray last night did not bring up any red flags so that's a blessing. So I guess we just keep a close eye on her. The swallow study has been pushed off until tomorrow which is not a bad thing. She's just not quite ready and having more time to work with OT will give Alex a chance to develop a stronger suck and try different bottle systems. We are really hoping the study goes well as it can have a lot of different outcomes. We appreciate the prayers and know that God hears every one of them.

Can I go home?

I have a great idea.....how about you take me home tonight?

What do you think?

Pretty Please?

oh well, maybe tomorrow

Busy Bees

Mommy has been very busy with Alex today, or should I say with all the hospital staff. I've met with several specialists, a team of docs, and I'm keeping our student nurse busy too. Respiratory turned down Alex's O2 yesterday which was another big step, however, they had to turn it back up around midnight last night due to her stats dropping. This morning when I arrived her respiratory rate was up and she was working hard to breathe. The docs think the secretions are to blame and after a deep suction, they were probably right. The nurse got a ridiculous amount of mucus out. Looks like they will keep her at the higher rate for today and suction as needed.

We are hoping for a swallow study tomorrow. Alex has been working hard all week and has to be at a certain level to simulate a typical feeding before they will do one. Her suck is extremely weak and she isn't able to get much out of the bottle at this point. The final call as to whether it will take place tomorrow or at a later date will be determined in the morning. Let's all say a prayer for her tonight.

Alex is napping right now and has been pretty worn out the past 24 hours. Although she is still weaning off the meds, the small doses she gets usually put her right to sleep for an hour or two. Anytime PT or OT pays her a visit it takes a lot of energy out of her as well. Overall, she is happy when awake and playful. We try to keep her up as much as possible during the day and we are glad to report she's been going to bed earlier and earlier each night. She gives everyone a big hug for all the thoughts and prayers and for taking good care of mommy and daddy.

Playtime

Our baby girl is still smiling

.... and is happy as can be. No updates, just a lot of the same. We had a good night and just hung out at our home away from home. Alex got some pain meds this morning which have knocked her out so she hasn't been awake since I got here. I'm not complaining because I'm able to get some work done. They have a library here and on my way in I checked out some new books for Alex. She loves for us to read her stories and I've read her all the books we have here from home at least 50 times! These new books may be the highlight of the day :)
I'll be sure to keep everyone informed on any updates and of course we'll keep the pics coming :)

Stretching out

Alex has been full of smiles all day. She had a good night and we are still working on getting her nights and days straight. She's going to bed between 1 and 2am which will not work out so well at home! Her physical therapy session went well today. They did massage, range of motion exercises, stretching and showed mommy things we can do at home to get her up to speed with her development. She also saw OT today and although she was excited to have her bottle again, she still had a hard time sucking. This often happens to babies who have been on the ventilator for a long period of time. We'll just keep working on it everyday.

Alex has been getting a lot of attention lately from the staff here and when a nurse or respiratory therapist meets her for the first time, they tell her they've heard all about her chubby arms. She loves the attention.

We love the names you all are coming up with for her latest video and are glad we can stay connected and interact with the outside world :)

Name this video...

We're all in better spirits today. So for this post we want you to come up with a clever title for this video. The winner gets a prize.

Peddling Fast

After a rough couple of days, Alex is definitely feeling much better. What a relief and blessing (big sigh). We stayed with Alex well after midnight last night trying to calm her down and get her to sleep. She had other plans and sleeping was not one of them. She was extremely cranky and J and I basically had to take turns consoling her and cuddling with her. Did I mention she might have been hungry? She was getting about 1/3 of an ounce every hour. If you just look at our baby you can tell that that amount would not even come close to satisfying her. The docs are extra cautious with feedings when kiddos are on CPAP due to it inadvertently pushing air into their bellies and risk of aspiration, yadda yadda. We don't have to worry too much about CPAP anymore since she came off of it this afternoon and is on high flow air again. It looks like she is on regular oxygen, however, it's coming out at a much higher rate to help keep her lungs from collapsing.

Luckily, she's been able to tolerate the small increases of formula and as of this afternoon she is up to full feeds, which means she is continuously getting about 1 ounce every hour straight into her belly. Tomorrow they will switch her to a more normal schedule of taking about 4 ounces every 3 hours. OT will also work with transitioning her to bottle feedings again.

Other than that, we're just enjoying spending time with her and seeing her smile again. We feel so much closer to taking our baby girl home :)

A rough night, but a better day

Alex's massage therapy

So it really seems like Alex is upside down in her sleeping patterns now. Last night when we left she was asleep (& had been for a few hours) - so we were hoping she would sleep well through the night. But when we arrived this morning we found out that wasn't the case. That she had been up and fussing nearly all night :(

We thought maybe it was because they hadn't resumed her feeds yet (standard protocol when there's a respiratory issue), but as soon as she heard our voices she completely calmed down. Of course this made us feel terrible for leaving her overnight. And, although she was calm, she was clearly mad at us - just glaring and refusing to smile. So we made it up to her by getting her out of bed & holding her. They also resumed her tube feeding this morning. All of this put her right to sleep & made everyone happy.


A big thank you
I know we've hit a pretty rough patch recently, but we've gotten through it with the help of all of you. I don't want to mention any names specifically for fear of leaving anyone out - there have honestly been so many of you doing kind things for us. But everything has been making a huge difference to us, from the awesome care package to the yummy meals; from family visits to the dedicated bloggers letting us know you're there every step of the way. Thank you all so much. We're incredibly blessed to have such loving friends & family surrounding us.

Taking a break

Although we've had some setbacks, today has been a bit brighter. Yesterday was draining for all and we just needed a good nights rest. Overall, Alex is doing well on the CPAP and we are grateful she is not back in the PICU or on the vent. Her little body just got overly tired fighting off the secretions and she needed a break. The docs did confirm that she has another UTI so they started her on antibiotics. Although she's still pretty fussy, she has been taking good naps throughout the day and enjoyed afternoon story time in momma's lap.

Thanks for the encouraging posts. We needed those. We are looking forward to the sun coming out so our little baby girl can ride her bike again :)

Mucus: 5 - Alex: 3

This morning hasn't shown the forward progress we'd hoped for. The mucus seems to have set up permanent residence - and has been interfering with her breathing again. So she's back on the CPAP snorkel for the day, hopefully just long enough to get her back to breathing normal.

A little discouraged...

It ended up being a long day with Alex. Something was bothering her all day and it was tough trying to figure out what it was. Are they weaning her too fast, is she having withdrawal, is she hungry, does she have reflux or gas, or is she just feeling icky? At times she was inconsolable which was hard because I just wanted to make it better. Feeling helpless is the worst. Tylenol and pain meds only seemed to help for short periods of time. Most likely she was hungry and it took the entire day for the docs to consult the dietician, change her feeding schedule, make sure she tolerated the new schedule, and put in an order for an increase. She finally got the extra ounce during her 11pm feeding.

An OT (occupational therapist) visited Alex today and worked with her to see how she would do drinking from a bottle. She had a hard time latching on due to her suck being really weak and they said it often takes little ones some practice to coordinate sucking, swallowing, and breathing again. They will continue to work with her each day to transition her to bottle feeds. PT (physical therapy) also stopped by but didn't get much further than asking questions since Alex was not in the mood. Soon after these visits we learned that Alex may have another UTI. They are not 100% sure so they took another urine sample tonight. I try not to get discouraged when I feel like we are taking two steps back but it's easier said than done.

Alex was happy to see her daddy arrive this evening and was smiling at his barking noises and other tricks. He has an amazing calming effect on her at times. It made it easy for her to finally fall fast asleep in mommy's arms. I cherish those moments and know we won't be able to hold our baby girl like that forever.

It's midnight now and Alex is awake and rooting. Guess she wasn't ready to go down for the night...although we are.

Protest

Maybe she's hungry, teething, feeling sick, or just tired of being in the hospital but our happy girl has turned into a grumpy girl. She managed to pull out the tube in her nose that feeds her and she also disconnected the same tube later in the morning and had formula all over her bed. Maybe it's her way of protesting because most of her breakfast didn't make it into her belly. Good news is she has managed to gain weight while here - a whole 7 oz.

I thought I'd post a happy pic from last night. Hopefully she'll be feeling better after her nap. I think some comments from her fan club would really cheer her up ;)

Our happy girl is back

We had good times tonight with our baby and as you can see she is feeling so much better. We feel like we finally have her back. We even got a couple of smiles out of her. Hopefully the pictures say a lot because we are headed home to get some rest and are too tired to post more :)

In transit

Day 21

...and making so much progress! Our big girl is moving up and out of ICU to the rehab floor this afternoon!! She is officially off the CPAP and receiving hi flow air through a nasal cannula. She is snoozing after her CPT (chest physiotherapy) - don't be fooled by the medical terminology- it's just a fancy way to describe a nice massage. It helps to get the secretions in her lungs moving.

Next steps are to get situated in her new room and work on weaning the air flow and eating again. She will meet with a swallow team to be evaluated on how well she can swallow and tolerate bottle feeds either today or tomorrow. Big steps. Jimmy and I are thrilled with her improvements, however have to admit we are a bit exhausted. Just a quick update and we'll post more later. Big hugs to all :)

Out cold

I just finished holding our baby girl for about an hour and it absolutely made my month. After only dreaming about it the past few wks and now actually being able to do it - just sends a wave of warmth over my body. It's just how it shd be.

She was completely content hangin out w/daddy the whole time until she fell asleep. Now she's out cold. No medication...hopefully down for the night. Things really seem to be getting better for our baby, and we can't begin to thank god enough, as well as all of you for your prayers.

More tomorrow...

The best medicine

I've had my hands full up until now, hence the late post. I got to hold Alex this morning which made my day. Jimmy and I both miss holding her so much and we are so excited she is at a point where we can start doing this again. She was awake for a good 45 minutes and opening her eyes (as much as she could anyway) . Her face is so puffy lately. Her eyes were almost swollen shut yesterday but they are getting better.

She had a good night with nurse John and is doing well today. They started her feeds again, via the tube in her nose and so far so good. Things are looking up and we are in good spirits. We love sharing good news with everyone and are so glad we have so many to celebrate with :)

I wanted to add this photo, cuz it's hilarous. -Jimmy

Resting

Alex is still hanging in there. She's been snoozing most of the afternoon. She looks like a little angel resting so peacefully (although her halo is riding a little low).

She's still breathing great on her own today -

...and she had a restful night, which means the chances of her needing to go back on the vent are really slim. So we have true progress :) The next challenge (for the docs) will be how to feed her. The continuous air pressure inadvertently sends air into her stomach, and there's a suction tube in her stomach that lets that air out. So food in her stomach wouldn't really stay put. We'll let you know how all that goes. Thanks for all the prayers and kind posts.

Pretty good day

We had a pretty good day today. She slept most of the day, and her stats have been good. We hate to even post it, because it seems like every time we post something good about her progress, we have to follow it with something not so good. But I guess after over 2 weeks, it's about time she starts pulling out of this. All our prayers are working - but we're not out of the woods yet. We just need her to stay strong, and clear of all that nasty mucus.

We had a couple of bittersweet moments when she was awake. We heard her cry for the first time in weeks, which was sweet because it was cute to hear here raspy little voice, but hard to endure because she was crying. But it wasn't long & she was right back to sleep.

So we're hoping she has a good night. We'll let you know how things are tomorrow.

Our feisty little trooper

Big update this morning. At around 11am our little bugger decided she didn't want to be on the ventilator anymore and forced it out. Before that, she had been making some steps toward breathing on her own - so this is where we wanted her to be anyway, although a little sooner than the docs felt comfortable. So she's now breathing completely on her own, with some pressure support from the CPAP which blows continuous air through her nose. This keeps her lungs & airway open, it does.

So things aren't looking so dark today. Let's just hope & pray that our little princess keeps it up.