Home & Happy

Well, we made it home yesterday and Alex is doing much better. We got discharged around noon and then had a couple of out-patient appointments that had been scheduled awhile back so we spent our afternoon at Children's. Alex was a happy little girl yesterday and she's been smiling and talking all day today. I would say things are great but she did vomit today which is not a good sign. Her neurosurgeon wants us to keep an eye on her and if she spikes a fever or has any more problems we'll have to take her in. We are praying it's nothing major. We want our baby home for awhile!

I'm taking a class in the evenings two nights a week and managed to make it through my first week despite my lack of sleep and our crazy schedule! Did I mention we are glad it's Friday? Jimmy and I are both working so we have a lot on our plates but we always manage to make the best of things and enjoy our time together as a family. We hope to enjoy a nice weekend AT HOME, relax and maybe even sleep in tomorrow. The weather is beautiful right now and as you can tell from the pics we love spending time outdoors! We are working on weaning the oxygen during the daytime so we give Alex breaks every now and then. Maybe we can wean her right off soon. Anyways, hope everyone enjoys the weekend.

Love,
The Diffees

Space Monster

Alex has been cranky most of the afternoon and has turned into a little space monster. She has her favorite gown on with koala bears in spaceships. We are all tired from a lack of sleep last night and her head is probably sore coupled with a new tooth coming in. She always likes to take on multiple things at once. She did get a really small dose of morphine in recovery but they say most kids just need tylenol after the surgery so that's what she's getting. They made two small incisions on the right side of her head where her shunt is and they don't look too bad. We are just thankful they don't have to shave her head!

Some have asked how we knew her shunt was malfunctioning and although the symptoms can be varied and sometimes difficult to spot, Alex's signs were very obvious. The biggest clue was feeling how full her fontanel (soft spot) was and she was just not herself. She was very irritable, tired and inconsolable at times and she started vomiting in the evening. It was also pretty apparent that she had a headache because she was very sensitive to light and sound and she kept her eyes closed. All very classic signs that there is a blockage going on with the shunt causing pressure in the head and changes in behavior.

We want to say thanks to everyone for their kind words and prayers the past 24 hours. What a great team of supporters we have rallying with us and making sure we are not alone in this journey. With the surgery now behind us, our spirits are lifted and we have a sense of relief. Let's just hope that Alex catches a break this time.

Surgery went well

Alex is out of recovery and doing great. The valve on her shunt was not working so they replaced it and she should be good to go. The plan is for her to go home tomorrow. This might be the shortest stay yet.

Prepping for Surgery - shunt revision

Alex is under the knife right now getting her 1st shunt revision. She should be in recovery within the hour. Send prayers - will keep you posted.

Good news & bad news

I always like to share good news and pictures but it's much harder to post when things are not going so well. I've been struggling with what to post the past few days and to be quite honest haven't even attempted because I'm afraid I'll use this blog to vent or maybe I'll come across as negative. This journey we are on is not easy and we go through our ups and downs and we've been a bit down lately. We sprinkled in some fun things since Alex has been out of the hospital (2 weeks now) but are still adjusting to what is considered normal for us the past few months. We spend a lot of time away from home, church, family and friends and we have so much going on with Alex's medical needs. It can be overwhelming at times. When people ask if we need anything I wish we could somehow get some of their energy transferred to us.

Alex just finished a course of antibiotics to treat her most recent UTI. She has several appointments this week including a Children's follow up visit for her high blood pressure. Today has not been a good day for us and we are worried something is wrong with Alex's shunt. There are certain symptoms we know to look for when a shunt malfunctions so we have a call in to Children's and are waiting for the Neurosurgeon to call us back.

Well, not the uplifting post I'd hoped for but nonetheless, it's an update as I know so many of you are checking up on us.

We actually just got the call back & they want us to bring her in for a CAT Scan & possible overnight observation. Please keep Alex and the Diffee family in your prayers.

Camping and stuff

It's long overdue for a post and if you follow our blog you know that once we get home from a hospital stay it takes us a few days to settle and establish a routine (and update our blog). We got home Tuesday evening and the first thing Jimmy did was mow the lawn. Why am I sharing this? Well, just smelling the fresh cut grass made being home a sweet reality. We were no longer confined to a small room with a window we could only look out of. Being home was a blessing and we were once again reminded to never take anything for granted.

We were home for two nights before we took off to the mountains for our first camping trip of the year. We had a good time, although it was not entirely the relaxing getaway we had hoped for. Alex was teething and very cranky which made us paranoid that it might be something more. Her fussing was worse at night so we really didn't get much sleep. Just to be on the safe side, we packed up and headed home on Saturday afternoon.

It turned out to be a good thing we did, because Saturday night she came down with a high grade fever, so we took her in to the ER. We had a pretty good feeling it was another UTI, and were proven right - even though it meant being at the hospital until 4:30 am. We were sent home early Sunday morning with some antibiotics to treat the UTI. Jimmy and I have been taking turns sleeping and Alex is working on catching up on her sleep too. She's feeling a little bit better today, although she did have another cranky spell for an hour or so today.

So all in all, we're taking steps forward, just not without taking a few steps back. But at least we're not in the hospital :)

Toothsday

So today is definitely the best day in a while. We found out that she gets to come home today! She seems to be recovered from the virus, and doing well on her Oxygen needs. We couldn't be happier.

And in honor of the occasion, Alex cut her first tooth. We had no idea it was coming - either it didn't hurt at all or she has a high pain threshold. Either way...it's here.

And hopefully in a few hours, we'll be outta here. Thanks to everyone for all the thoughts, prayers, and SBAC donations. We love you all.

A case of the Mondays

Mondays have to be our least favorite day of the week. I'm sure many of you would also agree. Of course now that the weekend is over the weather decides to warm up.

The docs are still working on lowering Alex's blood pressure and running some tests so we'll probably be here a couple more days. Alex hasn't been able to sleep much today with so many people in and out of the room so we are hoping for a long nap this evening. It's so frustrating when Alex falls asleep and we ask the nurses or respirartory therapists to come back to do their cares and they practically scream when they talk or make a bunch of noise or even slam the door which ends up waking her up anyway. I know it's tough to rest around here but come on. Maybe I need a nap?

Mother's Day

Today's been an okay day so far. Great grandma came to stay w/Alex while we did the Spina Bifida Run (walk) this morning. The weather was gloomy, but the rain mostly held off for us.

For Mothers Day, Alex painted a nice card for Nic. I came to the hospital after the race, while Nic went home to get some rest & get caught up around the house.

We're still not sure when we'll get to bring her home. Every time we think it's close, "something" comes up & the date is pushed back further. So we'll just keep hangin' out, & post more when we know it.

To all you mothers out there following the blog, happy Mother's Day.

Another weekend

Well, looks like we will be spending another weekend at Children's. Thursday the docs told us they really wanted Alex to be suction free for 24 hours before being discharged. The main reason being we can't deep suction her once we are home. We were hoping Alex would go home on Friday but she needed to be suctioned overnight so we set our hopes on today. We were happy to hear that she wasn't suctioned last night but her O2 levels continue to randomly drop at night causing the docs enough concern to not want to send her home today. Of course they want to monitor her so we will most likely be here a couple more days.

On top of her respiratory issues, she has a couple of other things going on too. It was brought to our attention that Alex's blood pressure is higher than 95% of babies her age so they want to start her on a new med this evening. They are not really sure what is causing it but feel it needs to be treated. Alex will also be getting splints on both of her feet after a consult with PT and Ortho. I noticed earlier this week that something was odd about her right foot and it was facing more outward than normal. The PT noticed the same thing starting to happen in her left foot as well so we are waiting to hear what the next steps are in terms of correcting this.

We are just trying to keep our heads up and take everything in stride. We pray that Alex catches a break here soon, so we can get her out of here.

Eat your veggies

Today was a pretty good day. Alex only needed to be suctioned a couple of times and was doing well with less O2. I feel like we might be getting close to going home. The highlight of the day was Alex actually eating her veggies, since she's been spitting them out lately.

She's been a little more sleepy than usual, which we're thinking could be her going through a growing spurt. We're just hoping it's growing up, instead of out ;)

Anyway...we just put her down for the night so we are headed home.

Love,
The Diffees

A junky week

It's been a week since we were admitted to Children's and we are well into the hospital routine once again. Not much has changed since yesterday. Alex still sounds "junky"as the docs say when they listen to her breathe but she is making a little bit of progress everyday. She's been doing really well in the daytime, it's just the nights that are a different story. She still requires a lot more O2 and suctioning while sleeping and she'll be here until that improves.

Many of you have asked how Jimmy and I are holding up. Well, we are definitley feeling tired but doing ok. We are anxious to be home with Alex and for her to be virus free. We have a lot we are looking forward to and can't wait to enjoy the beautiful weather with our baby girl.

It's a new day

We are all glad Monday is over! Thank you for the kind words and comments yesterday - it really helps us to know we are not alone. Some days are harder then others and being in and out of the hospital can be emotional & physically draining. I too am brought to tears when I read some of the comments and other times they put a big smile on our face. It warms our hearts to know that so many are thinking and praying for us. We truly are blessed and feel loved :)

Alex's breathing started to improve yesterday afternoon and into the evening and she had a fairly good night. She still required quite a bit of suctioning and she did dip on her O2 levels but not as much as Sunday night. She's getting a little bit better everyday which makes us happy. We have the Spina Bifida Walk/Run/Roll coming up this weekend and our first camping trip of 2009 planned the following so we need this bug to pack up and be gone.

Setback

Apparently, I spoke too soon about Alex being ready to go home. The highway I take to go to the hospital was basically a parking lot this morning so I called Alex's nurse on my way there and I got the dreaded news that she had a rough night. They had to increase her O2 from 1/2 liter to 3 liters overnight because her oxygen levels kept dipping. The nurses had to deep suction her every 30 minutes and RT did the CPT treatments to help loosen up the secretions. This seemed to help but she continued to randomly desat all morning.

She had a chest x-ray earlier that showed a lot of air trapped in her stomach (prob due to the increased O2) and the docs think it could be contributing to her lungs being crowded so they just placed a small ventilation tube into her stomach (via her nose). She's napping peacefully right now and doing ok with a little less oxygen then this morning. We found out that she has rhinovirus which causes the common cold - in most cases. We are feeling a little discouraged and just hope our baby girl turns the corner soon and can come home where she belongs.

Getting Better

Alex is sounding better and having a good day. We are guessing we'll be here a few more days (yes, we are experts now) and are just waiting for this bug to clear up. We hung out at the hospital all day and I finished putting together one photo album! I really need to keep up on the photo thing. Not much to post but have a cute pic of Alex with her bedhead.

Productive day

Alex got in a couple of good long naps today and overall seemed to be feeling better. Mommy worked on organizing the millions of photos we have taken since Alex was born which is turning into a bigger project than I anticipated. Oh well, guess we have lots of time here at the hospital and I feel better if it's spent being productive. As you can tell from the photo above, daddy was productive too :)

Alex's aunties came to visit us and aside from that it was a pretty quiet day here. Keep praying for a speedy recovery and healing.

Much Love,
The Diffees

Yeah for Friday

It's Friday and we couldn't be happier about that. It's been a long week and the Diffees are tired and could use some rest. Not much has changed with Alex's condition since yesterday. We are trying to stay on top of the Tylenol and Motrin to keep her as comfortable as we can. We're thankful that she still has an appetite and is eating fairly well and because she is staying hydrated they haven't had to place an IV. It's always good to count ALL your blessings because it could always be worse.

The highlight of the day would probably have to be Alex's bath time. Although the hospital does have infant tubs, they don't recycle them and I hate to use one once and then throw it away so I rigged up the bathtub with towels to prop Alex up and used the the spray hose to rinse her off. The hose got out of control a couple of time and sprayed all over us but I managed to get Alex squeaky clean. You gotta love the smell of a freshly clean baby. It's my favorite :)