Memorial Day

In recent times Memorial Day has turned into a holiday to kick off the start of summer, full of barbecues and sales.

I would like to remind you all that it is actually a very somber holiday to remember and pay tribute to our service men and women who have paid the ultimate sacrifice for our country.

It should not matter what your political views are or your feelings on what our country is or has done. Please remember that these fallen men and women are someones; son, daughter, sister, brother, parent and friend. They gave up everything so that we can have everything that we do.

I would like to encourage you all to say thank you to those these men and women have left behind or place a flag on a fallen soldiers grave.

This is a great site if you would like to learn more about this holiday.

I would also like to share with you a quote from Christian Military Wives that says a lot about this day;

"This special weekend set aside for National observation is a time for us to publicly, prayerfully and thoughtfully remember those who have lost their lives defending this great Nation. Please spend time in prayer for our Gold Star Families. We have an opportunity to remember and honor the fallen by reaching out and loving those they left behind."

Thank You

There's No Place Like Home

It's so true Amber is even better now that she's home. Every toy she greets like they've been parted for months its so adorable. She seems to be doing well. She was very congested in the morning but it cleared up, she only choked once. Now that she's feeling better she does not like the oxygen in her nose and is constantly trying to pull it out. It's so nice to have our chatty baby back!

Amber is doing well but I think the two of us are really stressed out. Last night we had a thunderstorm and lost power. I flew out of bed thinking her oxygen wasn't going to be working....her oxygen doesn't run on electricity so she was fine. Her pulse ox monitor does but thankfully it has a good battery power reserve. Her regular monitor isn't set up to switch to batteries so needless to say I did not go back to sleep until the power came back on an hour and a half later. The other stressful part of the night was that we had our air conditioner running which made it almost impossible to hear her in the monitor. We're still trying to figure out all the in's and out's of using her new equipment and what works best for us.

We had a really good visit from the respiratory therapist and a visiting nurse. Hopefully tomorrow we'll get set with a few more things we need.

As of right now that's all I can think of. We have a lot of things to get caught up on and a lot of moving around to accommodate the big oxygen tanks. Hopefully tonight goes well so we're revived enough to get what we need done!

Wordless Wednesday 'looking back and finally home'

This is something new for all of you!

Generally I wouldn't write anything but just so you know this is a picture for everyday we were in except today's is the home picture. We are so happy to be home thank you for all your prayers and well wishes. We should be hearing from the surgeon tomorrow afternoon to get his opinion. We are set up with oxygen at home and should be visited by a respiratory therapists and a visiting nurse tomorrow.

Day 4 Things Are Looking Up

Look at that there is actually something after the number today! I think that's almost proof enough that today is looking better! For starters I woke up in a good mood (that always helps)!

Our favorite day nurse was back! When they tested Amber without oxygen this morning she dropped into the low 80's but brought herself up to the mid 80's! She is still no where near ready to be off the oxygen though and they did not even try to wean her off today. She gave Amber a lovely bath and Amber smelled so good and her hair looked so nice! She's had a lot of diarrhea today but they said the antibiotic she was on can do that. They've been pushing solids to help get her poop thicker. She ate 4 oz of peaches today and almost 4 oz of bananas. The bad news is she just majorly threw up and had diarrhea on the two of us. I'm thinking it was over eating since she doesn't have a fever.

We were visited by a multitude of residents and med students (we're at a teaching hospital) today when the floor pediatrician came in. They bombarded us with questions about her sickness, general health history, genetic testing and anything else they could think of. After words I believe they had a session discussing her very much like an episode of House because one came back with theories and things we should tell her Dr's to test her for. They did inform us though that the testing they did when we first came back positive for a common virus. The virus usually causes croup but thankfully it's only cause Amber to have something like bronchiolitis. This means she doesn't have to be on antibiotics anymore.

We were also visited by the pulmonary specialists resident. He said that him and the specialist looked over Amber's recent chest x-ray (the one from Friday night) and it looks like her hernia has gotten worse and is now in front of her lungs. This is bad news because she doesn't have a lot of room to breath to begin with and coupled with the respiratory infection and intestines in front of the lungs she's really have a hard time breathing now. This explains why they are having such a hard time getting her off of the oxygen and why everyone is so intense of discussing her hernia. I've got an e-mail off to the guy in Boston who would be fixing that so we'll see how it goes. The bad news is the pulmonary specialist himself did not show up today. This mean we'll be spending at least another day here because he is the one that will tell the pedi floor team if she should still be watched for the virus or if she can just be sent home with oxygen to recoup at home. This is the second day he's stood us up so hopefully he actually comes tomorrow.

The best news of the day is Amber SMILED!! Finally finally finally! She really seems a lot better today her color is back and some of her energy. She was playing and acting more like her usual self. This really gives us hope that we'll be able to bring her home soon and get her some sun! Oh and she's gone back to refusing to go to bed lol so she must be feeling better!

Now for something that will make you laugh. In our tiny room is a pull out chair with a mattress smaller than a twin. The hubs slept on one comfortably all by himself when Amber was born. The last couple of night the two of us were supposed to be taking turns sleeping on it and an awful rocking chair. Well my hub is a bed hogging troll! So sleep for me wasn't going so well and sleep for him wasn't going so well because I would constantly poke him till he woke up. This is where being two tiny people comes in handy! Last night we both squished onto this tiny one man bed and actually had a very good nights sleep. The nurses and Dr's gave us very funny looks, I'm sure they've never seen two people actually try and successfully sleep on one of those!

Do you know what else made my day today! I logged onto my e-mail and saw a message from a mothers site that I use saying I was the winner of a resent giveaway! I had completely forgotten that I'd even entered. This is what I won. I can't wait till it comes in, of course it will say Amber and her birth date.

It's had it's ups and downs but I'd like to say overall it was a good day! Tomorrow I'm going to try something a little different. I hope it will something like a weekly treat for you all so you'll have to let me know what you think.

Have a great night!

Day 3

I have mixed feelings about today. I woke up in a funk and I'm ending the day in a funk but the middle was really good.

The weekend nurses and Dr's are gone. But our day nurse was amazing. Amber seems a little more like her usual self. She even ventured to eat almost a full 4oz jar of bananas! Apparently though the body uses oxygen to digest so she needed her oxygen turned up to .4 afterwards. In general she still is having periods of distress and her oxygen will have to be turned up a little every once and a while.

At this point they've stopped discussing weaning for right now. We're supposed to be seen tomorrow by the pulmonary specialist who follows us here. It sounds like we're not going any where for a while. Hopefully if we can get her down to a lower amount of oxygen and if she's having less periods of distress we'll be able to take her home with oxygen.

It's amazing how much better one can feel after a shower! I finally got one today. We tried to give Amber a bath but it didn't work to well. The poor thing really needs a good hair washing.

I'm sure theres more to update about but I just can't think of it at the moment.

Day 2

Today is day 2 of Amber being in the hospital, I had to really think about that it feels like we've been here for longer than that.

She spent the night on .2 oxygen (had been at .3) and seemed to do ok. She woke up this morning very congested. Seems like she is feeling worse today; she's very fussy, not really with it and had one bout of diarrhea. The ER Dr we saw last Sunday came in and confirmed that it did look like she was having a much harder time breathing than when she looked at her last Sunday. So now her oxygen up to between .2 and .3.

They added a water bottle type thing to her oxygen to make sure she doesn't get dried out. When they did this they didn't break the seal to the bottle so Amber was on room air for less than a minute. In that time her pulse ox numbers rapidly dropped down to the high 70's. That accident confirmed to them that she definitely can not be off oxygen at this point.

The plan is still to give her another round of antibiotics tonight (her 3rd) and to wean her off the oxygen. Based on how she acted today I'm not sure when they'll try to wean her off the oxygen again. They can't give us an exact day we'll be going home because it really all depends on how she does getting off the oxygen.

We're praying she gets better soon, we just want to see her smiling again!

Not The Getaway We Had In Mind

I think I mentioned earlier in the week that Amber has been really sick since this past Sunday. She's had a fever, congestion and diarrhea off and on all week. I thought she was getting better but yesterday she was extremely lethargic, very congested and seemed to be having a really hard time breathing.

After a long game of phone tag with her pediatrician's office we were finally able to bring her in. She had a fever of 101.2 and her pulse ox was reading in the low 80's. Anything below 92 is bad news. They sent us back down to the ER at UMass and we were admitted right away. She's been on oxygen and an IV since last night.

Her numbers are in the high 90's now as long as she's on the oxygen, as soon as they take her off or lower it her numbers drop. Around noon they dropped the amount of IV she was getting because she has finally started to eat better and have more/better wet diapers. Even though they've been constantly sucking out her nose and mouth she is still struggling with the amount of mucus she has. She had some good periods of sleep last night and today but she's still waking up and choking a lot.

Right now the plan is to wean her off the oxygen at some point either tonight or early tomorrow. They're hoping to get us home tomorrow but it doesn't sound too promising. There's not much else to say, I have a nasty case of mushy brain thanks to lack of sleep. I'll try and update some more when we have more information.