Been to long.....

Can't believe its been a little over two weeks since we last update. Needless to say we've been very very busy.

So, since Amirah's been back at the NICU she's been doing AMAZING!!!

Let's see....she went back to NICU on Monday 8/13. By that Thursday she was all the way back down on her O2 needs so the team decided to switch her to volume settings on her vent. They did this because basically if she were to go back to Blythedale or come home she would need to be on volume ventilation as apposed to pressure settings. So they switched her over and she did great on it...no need to go back to pressure settings. She did so great they were able to wean her O2 all the way down to about 25-30%.

This week they started her on Trach Collar a few hours a day. She is doing sooooooo good on it. The plan right now is to try and have her on the Trach Collar during the day and back on the vent at night.

On Monday, after being back in the NICU for a week I asked the doctors what the plan was. And they all agreed that for what ever reason it appeared that Amirah didn't care for Blythedale and they thought we should try taking her home. We were ecstatic!!!!

So that day I started making a bunch of phone calls, and the hospital staff started making a bunch of phone calls all to the wheels in motion. At this point all we are waiting for is the nursing schedule to be covered and we can bring her home!!!! We have filled out a lot of paper work, made a lot of arrangements, done some very deep cleaning, moved furniture around all in anticipation of bringing Amirah home.

The other thing that has happened since Amirah has been back to NICU is that she has become a different baby. The baby that left NICU for Blythedale was barely holding her head up, didn't seem to enjoy her toys for a long time, and would occasionally smile. Since being back at NICU she is stronger and more engaged with the world around her. She will play with her toys for a really long time. She happily entertains her self with her toys. Smiles at almost everyone who comes to talk to her (and its a lot of people; family and hospital staff ).

We have also been getting more "freedom" in taking care of her while we are with her. Basically the staff lets us do all the work and they are there for back up and/or to answer questions or give helpful suggestions as needed. It has given me the confidence to really know that we will be able to take care of her when she comes home.

We will be getting 16 hours a day of in home nursing. I am both nervous and relieved that this is available to us. Relieved for the obvious reasons. It's a little scary and overwhelming to think of having Amirah home with all her medical needs. And a little nervous because it's hard to imagine having a stranger in our home every day for 16 hours. I know they will only be strangers in the beginning, and I am hoping Amirah will have a terrific nurses, but I guess the unknown part of it seems a little scary at the moment.

As Amirah's home coming day gets closer I have found myself in moments of feeling sorry for myself. Sorry about all the time we missed having her home. And have been remembering all the different things and feelings we went through in the almost 8 months since she was born. It's really hard to put the thoughts into words I guess. But I guess I feel the need to express this part of our journey too.

I guess I'm blabbing on at this point, so I guess I will wrap it up. Here are some great photo's of Amirah over the past few weeks....

Amirah concentrating on her toys....


Snuggling with Momma


Amirah on her first trip to the ER.... as you can see she looks pretty upset lol :)

Happy girl



Daddy's girl

Back in NICU

Amirah was admitted back into the NICU today.

On Saturday we had a quick trip to the ER. Her oxygen saturation was really low and she was having some trouble breathing. The ER was able to adjust her vent a little and basically sent her right back to the rehab.

This morning She was satting really low this morning (in the 70's) and was on 100% oxygen. Long story short after some up's and down's her heart rate dropped really low and after getting her stable they transferred her to the ER. The ER wanted to admit her to the PICU but since she just left the NICU last week and they are so familiar with her we transferred there instead.

While we were scared when she had her low sat's and brady episode we are doing ok. We know Amirah is getting the best care available and will get through this too.

She is NOT running a fever and is NOT acting sick. Her chest x-ray looks pretty good and her lungs are moving air. We aren't quite sure why she's having these episodes but they are running a bunch of test to see if she has a little something "growing" in there.

I don't have much else to say other than that we are EXTREMELY tired tonight. Send Amirah a little extra prayer tonight....Will update again soon.

The Big Move !

Amirah looking at her new mobile....she LOVES it

We are here! I can't believe we finally transferred! I am SURE there will be a lot for us to process still, but we are here :)

Amirah did GREAT during the transport. One of the nurses even asked if she had been sedated because she was so calm.

I am sure we are going to have a some adjustment period over the next few days. But we know this is going to be a great stepping stone for Amirah. Both my mom and Andy commented several times how full of energy Blythdale feels. It feels more like a school than a hospital.

We will update more about all our experience, but for now I just wanted to share a few photos....

Amirah in her pretty transfer dress .....


Andy, my mom and one of the stat team members waiting for the final ok to move Amirah....
Another Stat Team Member getting Amirah ready for the move...


Buckling Amirah into the transport...

Amirah settling into her new spot....



Wednesday we were moved over and got a spot next to a window!!!!!

Nana and Amirah cuddle on Wednesday afternoon :)


Amirah sprawled out on her pillow (today) ...

( at Blythdale. We will update and post pictures after she's settled.

( Amirah is scheduled to transfer to Blythdale this morning. We are excited and apprehensive. We won't be truly relaxed and excited until she is settled in

203 DAYS!!!

It's been 203 days in the NICU! It sounds like a really long time when you put into days, doesn't it?

We had been planning that Amirah was going to Blythdale yesterday, but Tuesday she started a fever. Soooo.... that meant they had to run a bunch of test. Blood tests, urine tests, lung secreation tests...all to see if she had an infection. They started her on IV antibotics right away ust as a precaution. All the initial results indicated she DID NOT have an infection and her mood was great. Today at five o'clock we found out that she indeed DID NOT have any infection! So the plan is now to send her to Blythdale early next week. We are hoping for Monday.

We joke with the NICU staff that Amirah just wasn't ready to leave yet and that she wanted one more weekend there with her friends :) I joke now, but Tuesday when her fever started I was devasteaed. I was SOOOOO ready for her to go. But, as usual, amirah had more to teach me about patience and surrounding control. It's not an easy lesson to learn, but Amirah is a very good teacher, and it is becoming easier and easier to let go of the control over things I have NO control over.

I am so grateful for our daughter. She is sooo amazingly beautiful and her calm little being is a joy to be around. She is a very calm baby for all that she has to go through on a daily basis. When she is awake she looks around with her big brown eyes and takes in EVERYTHING around her. I could go on and on about all the cute little things she does, but it be boring to everyone else but me :)

I hope to update next week that she is in Blythdale, but am ok with what ever happens at this point. I am just so grateful that Amirah is growing and getting bigger and stronger everyday.

Here's a cute photo of her in her bath from Tuesday....