Moving In

This didn't come out great but it was so cute to watch her playing

Amber "Thank you Grampa for the balloon and kitty!"

Amber had a rough night and a rough morning, she had everyone very concerned but I'm pleased to say she's doing much better! The bad news is they're going to keep us longer. How much longer I'm not sure. They are moving us (again!) hopefully this is our last move. I'm excited about it because it's supposed to be a big, single patient room on a single room only floor! After last night we both need a good nights sleep. 

They're transferring her care to Complex Coordinated Care's inpatient floor and they will be handling her from now on. They're team will evaluate her and decide what they want to do from there. Depending on what they think they might keep us for 24 hours or longer.

 We really need to figure out what to do about her feedings. The team we have now is doing g-tube feeding as the primary feeding, this means she's hardly breastfeeding. It's really frustrating because she's obviously getting too much to eat this way and she still wants to nurse on top of it. This is also not what we agreed on when we said ok to the g-tube. 

I'm not sure if they'll try to do oxygen weaning again, it didn't go so well last time but I guess they expected that. She really needs to wait another week or so before she can be weaned. I also don't know if they will want us to try again at home or do it in the hospital. 

Supposedly this new team will be able to set us up with some other testing we've been waiting on and hopefully get her Dr's to communicate better. 

My brain at this point is totally fried from hearing Amber and all the other babies constantly screaming!

Nearly Wordless Wednesday

 In the ICU before she was off the vent.

 We came back from dinner and lifted her blankets to find the nurse had moved her toy next to her to keep her snuggled!

 It was really funny to see

 chilling with daddy

Watching TV

Amber is doing so much better! She is only attached to the oxygen now, just like at home, she no longer has any I.V.'s or leads attached to her. She does have the blood pressure cuff on and off because it has still not come down to a number they are comfortable with, it would be a great number if she were an adult. We haven't heard if they will increase the dose yet or not. 

Things are slowly moving for us to be sent home. We've had a lot of training with the G-tube and I think we're pretty comfortable with it. It will be the same company that delivers our oxygen. I wasn't thrilled about this but we've worked out some kinks with the company reps here so hopefully when we go home the oxygen and g-tube things will be all set and not stressful. We're still waiting for Complex Coordinated Care to come visit us. This will be a person that will be doing the job I do now with coordinating who Amber sees, who she needs to see and when she needs to see them. 

Yesterday they told us we would go home today, today they're telling us we'll go home tomorrow. So I'm not really sure when we'll go home, I'm planning on tomorrow but I'm not getting to excited yet. Although today I feel more comfortable with the news of going home than I did yesterday. 

Hopefully my next update will be from home!!

Surprise!

Sorry I haven't been updating really well, the hospital limits time you can spend on blogs (but not facebook weird huh).

Any ways Amber has been off of the ventilator since 11:30 yesterday morning!! It was a little rough at first but she's doing really well now. She's on regular oxygen, she had been on a high flow yesterday. She is taking 1 liter of oxygen, at home she was on a half a liter so she's almost back to baseline!
They took her off her antibiotics this morning. She seems fairly comfortable, they added a pain med to her epidural last night. She had been off of it since the previous night just to make sure she would breath well off the ventilator.
She took 3 ounces of pedialight last night and about half an ounce of bottled breast milk this morning. Depending on how she feels she might be able to nurse some time today.
All of this is still way better than they expected from her. They want to see how she does off of the antibiotics, increase her feedings and see how she handles the regular oxygen but depending on all of that she should be moved to the regular floor later today or possibly early tomorrow. It's really good news that she won't need to be in the ICU but we will not have our own room upstairs so we aren't really excited about it. We're just praying for a quite roommate(s) so that Amber will be able to get the rest she needs and not be stressed out by another crying child.
Thank you for your prayers we never thought Amber would be doing so well so soon this is really a blessing!!

I'd also like to say Happy Father's Day to my wonderful dad and Amber's wonderful dad!

You two are both great and I'd say more if my brain was working!

Best Case Scenario

I just want to start by saying thank you all so much for your constant prayers and support we really really appreciate it!
Amber's surgery went better than they expected! The surgeon said it was the biggest morgani type hernia he's seen, and seen a lot of them! They had told us because it was so big it would probably need a patch which could cause an infection. Thankfully she did not need the patch! Her diaphragm was good and strong so it only needed to be stitched up and they do not believe it will re-open!
Going into the surgery she had a low blood level (they had issues taking blood the night before and took more than usual) and they thought she would need a transfusion during the surgery but ended up not. This morning they did give her a transfusion because her levels were low and they were taking more blood. She's doing a lot better since the transfusion, her hear rate is better and she looks better.
The pulmonary specialist visited today and was amazed at how well she is doing. He said it looks like they'll be able to take the breathing tube out tomorrow and get started on feedings through her g-tube. This is better than the best case scenario! We aren't getting too excited about this because they said it could change or they might have to put the tube back in. She is doing soo well though its very encouraging!
Amber had another echo-cardiogram done today. It showed that her mitral valve leak has gone from the mild range to the mild to severe range. They are not too worried about it they said that based on how dilated the left side of her heart is this is something she's been dealing with for months. They are going to start her on some medication for it and follow up on it in a few months.
Right now Amber is still pretty sedated, she actually has an epidural. She wakes up when they do things to her, as of this afternoon she seems more with it and alert when she's awake. She also seems relatively happy when she is up she even gave her PA Grammy a squinty smile!!
Everyone seems amazed at how well she is doing and how fast she is recovering. We know that this is just the amazing power of prayer! God has really blessed us and little Amber in that He has given us all the right people to care for her and all the right tests at the right time to catch everything that seems to have been troubling her.  Thank you all so much for the prayers you've been giving her. Please pray that whatever happens tomorrow is the best for Amber's recovery in regards to her breathing tube coming out or not. You can also pray that I have a better sense of peace about the whole g-tube issue.
Thanks again I hope you are all enjoying the great weather we've been having and have a lovely weekend!

Today's The Day

Amber's surgery in scheduled for 1:15 today. We're praying that the hernia is an easy fix, that there is no scar tissue or any other issues that will complicate things. Their major concern right now is still with the anesthesia. Because of her small chest shape they are worried that she will have issues clearing the fluid from the anesthesia. They've told us they will be shocked if she is able to come off of the breathing tube this weekend. It's looking like we will be here for a few weeks at the longest.
The newest news is that they've decided to put a g-tube in when she has the hernia fixed. This will be a "permanent" thing meaning she'll be coming home with it. They're hoping it will help with her overall development.  I'm not thrilled about it but it is what it is.
The hardest part right now is that Amber is not allowed to eat so she's very upset. The other hard part is not being able to nurse her, my supply is going down and it really is just an added stress I don't need.
Right now we're waiting to go to surgery so we're on the Pedi recovery floor. It's very loud and crowded, we have a very fussy roommate. After surgery we'll be in the ICU. I'm hoping for Amber's sleeping sake that we have a room to our selfs. Depending on Amber's condition it sounds like we'll be staying in the ICU till we go home.
Hopefully I'll be able to update again either tonight or tomorrow morning, it will depend on how Amber is doing. Right now Amber is playing and still smiling some...until she realizes how hungry she is!

Thank you for all your prayers and support we really appreciate it!

Wordless Wednesday 'Just Chilling'

(off to Children's today, surgery tomorrow)

We Have A Date!!

This is a horrible picture! But we had a great birthday party for the boy! Despite the rain we still had fun inside playing the wii. It was very funny to watch my 85 year old grandparents learn how to bowl! We also had a very lovely dinner just the two of us.

I finally got the call today! We are all set for this week. Amber will be admitted on Wednesday afternoon and she will have her surgery at some point on Thursday. There are still some concerns from the anesthesiologist so hopefully things get worked out. I really don't have any information about how they will be doing the surgery. She will be in for a minimum of 4 days. Depending on how things are going I may or may not be updating.

Please be praying for us. We still have a few things to get set/altogether before we will be ready to go.

Flash Back Friday, "21 Years"

So it's not a traditional "Flashback Friday". I really don't seem to do as well with these as my "Wordless Wednesdays". Technically it's also not a "Flashback" till Monday and I wasn't around when it happened but I think it's worth a look back.

21 years ago (pretend it's Monday) in a little Pennsylvania town an adorable baby boy was born! Well the town is not so little, but he was adorable.

 I'm very thankful for his parents. For the time and energy they put into raising him and making him the wonderful man, husband and father he is today! I could not ask for more!

It's been my honor to celebrate his last 3 birthdays with him and I'm looking forward to celebrating many more!

We've celebrated with his parents already but since it's such a big birthday we'll continue celebrating for a wile. Tomorrow we'll have some of my family over. On Monday the actual day the two of us will do something fun!
I don't have much for new news on Amber. I did get to talk to the surgeon and one of his schedulers. We're just waiting for a bed to open up in the PICU so we can go ahead to schedule it for this coming Thursday.
As you can see I'm changing things around a bit. I might be adding/trying out some new things to keep you more updated when I'm not able to get to my computer! Hope you all have a great weekend!

HAPPY BIRTHDAY BABE!

The Waiting Game

We've been waiting and waiting to hear from Amber's surgeon. Today I finally shot an e-mail off to him. Thankfully he replied right away. Apparently his right hand lady has been out all week who is in charge of call backs and that's why we haven't heard from him. He said that he will call tomorrow! He also said that his "anesthesia folk" have some concerns going forward with the operation so soon after her being sick. Getting this news right after her evening routine of choking through her bed time bottle and screaming her head off as she becomes un-constipated I'm really not thrilled with waiting any longer. However I would like to have my little Amber forever so I guess if waiting is best then I'll wait.

In other good news: Amber is down to 1/4th of a liter of oxygen during the day and doing fine! Her heart rate is a little higher but she doesn't seem to be struggling. At night she is still on a 1/2 of a liter. I e-mailed with her pulmonary specialist about it and he said it's good. He thinks that maybe in a few weeks and after she's gained some weight she'll do better. I'm not really sure what the weight has to do with it but at that point she'll go in for another oxygen challenge.

Isn't she a cutie!

This is just one of many beautiful pictures her PA grandparents took!

Wordless Wednesday 'Playtime'

What Happened On Friday

I'm sure you're all dying to know what happened at our appointments on Friday. I'm so sorry to keep you waiting but all the information has liquefied my brain, and then our PA parents were visiting and there was just no time to update....and on and on with my sad excuses :)

I'll start at the very beginning because it's a very good place to start.

Endocrinology: Found in the orthopedic department in case you were wondering. They had nothing new to tell us. They had not looked at any x-rays. They do not want to see us again until DECEMBER......hmmm sounds like some other endo dude I know. Anyways, since by the naked eye Amber's skeleton is only "messed up" on the top half they were not so excited. They did get blood work to check her vitamin D levels and said if anything interesting comes back from the blood work or the genetic testing then they'll see us sooner. Oh and they'd like us to see their orthopedic surgeon for a consult on her chest, maybe some other parts.

Pulmonary: Was a much better visit than I had expected. This is what liquefied my brain. All of Amber's breathing problems are due to her hernia and odd chest shape because of this prolonged use of oxygen is actually a bad thing. She will become dependent on the oxygen and will not take deep the breaths that are needed to help develop her lungs. So he wants to start weaning her off of the oxygen. If she is weaned off of the oxygen, due to her anatomical problems she will not get enough oxygen to help her overall development. So really its a lose lose situation. The first step is to get her hernia fixed. Then she'll have to go in for an Infant Pulmonary Function Test, this will tell them how well her lungs actually work. I'm not really ready to think about that test yet so I'll explain it when she's closer to having it done. Depending on the outcome of that test and some other blood tests they did we'll begin to discuss option to better Amber's breathing. They did do an oxygen challenge while we were in there, meaning they tried her on a lower level of oxygen every 20 minutes until she was on room air. She did a lot better than we had all expected so he told us to try her on a lower level of oxygen all weekend. It didn't really work because at home it's muggy and she still having a lot of breathing difficulties when she is in her car seat and eating. I'll be calling them tomorrow to discuss how she did, possibly the blood test results and see where we're going in the mean time. Oh she will also have a sleep and probably a swallow study after the hernia operation as well. I'm sure I'm missing other things but I'll remember and explain it better when things are happening.

Nutritionist: This was a surprise. The pulmonary specialist is also a neonatologist so he's very into the over all development of Amber and wanted us to meet with his nutritionist. They also pushed for us to see her because she has not gained a very good amount (for her) the last couple of visits. She was very nice. She still wants me to nurse as much as possible and add some formula to any bottles I pump. She also gave me "recipes" to get extra calories into the one formula bottle Amber gets and her cereal, fruits and vegetables. It makes feeding a little more stressful right now and it will definitely take some time for Amber and I to get used to. We'll see the nutritionist again in July. I'm not sure how I feel about this I don't think her bones or her muscles really need the extra weight.

Hernia: I finally got my call! It was rather awkward because I was in the same building as the surgeon and it probably would have been easier to just talk in person as I was trying to check out of pulmonary at the same time (thankfully my mom was with me!). He finally got the x-rays and agrees that her hernia definitely needs to be fixed and is the reason she is still having difficulties without the oxygen. He needs to go over her x-rays with his radiologist, discuss things with his anesthesiologist and should be calling me tomorrow to schedule either a consult or a surgery date. Amber needs to be over her respiratory infection for 2 weeks before they will do the surgery so they probably won't do it for another week or so. I'm really fine with this news. I think having the surgery now will really benefit her. When they mentioned the surgery before she did not have any complications from the hernia so I was really wary of the whole ordeal. I'm really hoping that once this is fixed she will be able to breath better, not be constipated, eat better and sleep better, so just improve things over all!

And then we finally ate and went home!

It was quite the day and we've been going non stop since!

But we had a very fun and lovely weekend, it was so nice to see our family again!

Now to bed!!

Taste Of Summer

Amber's first taste of watermelon!

(please excuse our messy hair it's just one of those days)

She didn't seem to sure at first but, as soon as she got a taste of it she loved it!

We tried out her new mesh bag feeder.

It's a little too heavy for her but she can actually feed herself with just a little help.

Unfortunately I'm still having video issues so I don't have any happy pictures of her eating.

We're still adjusting to life on oxygen. We're working out the kinks with the company. There seems to be some lack of communication when it comes to orders so we've been waiting all week for new tanks. It looks like we'll have just enough for our trip tomorrow but I'm worried her big tank will run out tonight and we'll have to use the travel ones. They never told us but they deliver to our area on Monday, thankfully they're making an exception and coming out tomorrow.

Tomorrow (Friday) is our big trip to Boston. We'll meet with the new Endocrinologist. I'm actually excited to meet her. From what I've read about her she specializes and is really interested in the type of things that Amber has; skeletal dysplasia, rickets and other bone disorders. We'll also be meeting with a new Pulmonary Specialist. Hopefully they (not sure if its a he or a she) will be able to set us up with a sleep and swallow study and give us more insight into how long she will have to be on oxygen.

It's a stretch but I'm really hoping we'll be able to stop in and talk to the diaphragmatic hernia surgeon. We've been e-mailing back and forth and he wants to talk on the phone tomorrow (sounds like the recipe to a cute high school romance huh) but in all seriousness I'm worried because he still has not received the x-rays we sent out last week. Ugh hopefully he'll get them tomorrow.

Amber is looking forward to seeing her PA grandparents this weekend!! It's been far too long and it will be very nice to see them again! Amber would also like to say "Happy Birthday" to all her cousins who just turned one and will be turning one soon!

Wordless Wednesday....."Fresh Air"