Amazing But Exhausting

Amirah has been home for almost two weeks, and so far so good.

It's been a crazy few days here in the Priester home. The day before Amirah came home from rehab Andy found out that he was being laid off due to lack of work on November 5th. Needless to say this has added a new level of stress to an already extremely stressful year. But being who we are Andy and I have been working hard not to panic (yet). He had already sort of been putting feelers out there and seeing what work might be available, so starting the day he found out about being laid off he has been very very aggressive about finding work. He actually had an interview that looked pretty promising last Wednesday and we hope to hear in a week or two. So please send a little prayer that way.

We were again forced to put our lives in perspective. So what if we don't quite now how our financial needs will be meet after November. We do trust that all will be provided for. The most important thing at this moment is that Amirah continues to grow, she continues to amaze us and continues to bring joy to our hearts and our lives every moment of every day.

It's so much fun to watch her happy little personality emerge. She is truly blossoming at home. She is a really happy baby and loves to play with me and her daddy. She almost always has a giant smile for us.... Like this



We have been busy since we have been home. We have had numerous doctors appointments, and in home evaluations. And had a few nights without nursing, which I don't have to even tell you how exhausting that can be.

But I don't want to make it sound likes its all been great. I was feeling pretty depressed on Sunday. The way I explained it to Andy was that I think the pressure of having a baby home with all the special needs that Amirah has right now hit me. When she was in the NICU there was a whole set of worries, but now that she's home there is a whole new set of worries...is she sleeping to much? is she not sleeping enough? is her breathing labored? are her nostrils flaring? are her vent tubes connected? did she de-cannulate herself? Is she pooping enough or to little? Is she developing the way she's suppose to? Is today the day that she will have to go the ER?..... the list goes on and on.

It feels a little bit like we are waiting for the other shoe to drop (again). I do feel lucky to have Andy as my partner through all of this. He is really good at helping me snap out of my wallowing in depression.

I guess there's not much more to say right now. Here are a few photo's from the past week....

Home Again!!!

We are home! Got home around 11 am. Things are going well.

Will update more soon.

We had to push a little, but Amirah should be coming home Friday!

It feels like it will be forever

So Amirah has been at the rehab for 5 days. She's doing really well. I thought that when she was admitted that the doctor understood our position. We agreed to send her to rehab for a week at the most. We really wanted her to come home. The nurses we dealt with at PICU didn't quite understand why she was going to the rehab.

Andy and I are more than comfortable with all that she needs. But we understood why her pulmonologist wanted her to go to the rehab. They wanted to make sure she would remain stable on her home vent at her new settings, and for any additional vent weaning we could do while there. But today, when we asked how things were going her doctor at the rehab mentioned she wanted to try and continue to wean Amirah and get her tor trach collar trial before coming home. This would mean an additional two weeks at the rehab! We let it be know right then that we would NOT be staying that long. We want to come by the end of the week. Yes we want to see Amirah get to the trach collar, but we do NOT want her to be there for that long.

It is IMPOSSIBLE to have any sort of normal life while she is in the rehab. Amirah is stable. She is ready to be home with us and I feel like every time we have to deal with a new team of doctors I feel like we get an incredible amount of resistance to how we want things. No one has given us an medical reason she needs to continue to be at rehab and I am hoping we won't have to fight to get her out. But if it comes to it we will fight.

There's not much else to say right now. Trying to be strong and positive, but really we just want Amirah to come home.

Here's a photo of her asleep with her Daddy on Saturday

And sitting in her Bumbo

8 days :( we were only home for 8 days

(Sorry for the long post, and sorry I have no photo's)

It sucks. We only had Amirah home for 8 days before we landed back in the hospital.

I'm going to start this post with a little BMW (bitch, moan and whine)...

I'm feeling very sorry for myself, a little mad and a lot sad. I can't believe we are back in the ICU. I go between being as "ok" with the situation as a I can be, to crying. I keep thinking "why is this happening to us?" I know there isn't an answer but the question keeps rolling around my head.

Again, we are back to the unsure, scary situation. Every time the phone rings I get scared that its the PICU and that Amirah is doing worse. Every time I have to tell the nursing service whats going on with her I start to break down again. It's only been 24 hours since she's been re-admitted to the hospital and I feel exhausted by the entire situation. How am I going to gather the strength to support Amirah, let alone take care of myself.

Right now Andy and I are sitting here and we aren't sure what to do with ourselves. We left the hospital around 3pm. Got home,ate some food, tried to process some of the last 36 hours, vegged out a little and tried to nap. We, or maybe just me, feels very torn. We left the hospital with the plan to go back and spend the night in her room again. Now it's almost 8 pm and I am beyond exhausted and I can't imagine having yet another sleepless night squished on a horrible fold out single bed with Andy trying to get sleep while Amirah's alarms go off almost constantly (not because she is having any trouble but because the vent alarms all the time for no apparent reason and her pulse ox alarms every time she moves her foot because the contacts don't work properly when she moves around).

But at the same time, I can't imagine not seeing her when I fall asleep, not being there when she gets upset, seeing her when she first wakes up. All options suck. It's impossible what option sucks less.

I'm mad that we don't get to have our baby home. I am almost at the point where I have come to terms with the fact that we didn't have a typical birth, a typical new born experience, but now it feels like we won't be having our baby home to have any sort of "normal" family life.

As always, I am having dual emotions. I am EXTREMELY grateful that Amirah only really has "problems" that she will be able to out grow. I am grateful that we have access to such AMAZING team of health professionals that keep our daughter alive. I am grateful that I have Andy as my partner and loving husband through out this entire crappy situation. I am grateful for our family and friends and all the love, prayers and support they give us.

Ok... now the quick breakdown of why Amirah is back in the hospital.

So, when we woke up yesterday morning Amirah didn't seem herself. But her lungs didn't sound to bad, just a little wheezy and her saturation were ok too but she was requiring more O2 than usual. So I gave her abuterol treatment an hour early.

Andy left for work (talking after she was in the ER we both had been feeling like maybe he should have not gone into work, but neither of us wanted to over react to the situation). She fussed for about an hour and around 7:30 she wasn't moving as much air in her lungs and I decided to call her pulmonologist. After talking with them about her status we decided I should bring her to the ER for observation.

It was just me and my mom at home so she stayed with Amirah while I started getting all her equipment together. After about 15 minutes I put her in her car seat to get her ready to get in the car. As soon as I put her in she didn't look good. Her color got darker and she was not comfortable. So, I took her out and we called 911. Amirah was very litheness and was just laying in my arms. They were at our house within 5 minutes or so and we worked together to get her a little more comfortable and it was decided she was stable enough to go to our PICU hospital that is about 25 minutes away and didn't have to go to our local hospital that doesn't have the PICU.

While in the ambulance we gave her a nebulizer treatment and it seemed to help her a lot. She got pink again and opened her eyes and was looking around and tracking on what was going on. She was still breathing a little hard so we decided to use the ambu bag to help her breath easier. As soon as she was on the ambu bag she was totally back to looking and acting like herself. We got to the ER within the next 5 minutes and she was sooo much better. She was moving air again, even if her lungs sounded congested and she was smiling at people.

We were then in the ER for over 12 hours. Andy basically got to work. I called him 5 minutes after he got there telling him we were going to the ER. He got on a train and came to meet us at the ER.

While we were in the ER there was a lot of back and forth about what our plan was. Long story short, there were a few times we thought we were going home, but in the end we agreed to be admitted for overnight observation. We finally got up to the PICU about 9pm. We got Amirah settled and me, my mom and Andy left to come home.

Originally me and Andy had thought we would just come home, get some MUCH needed sleep and go back to the PICU early the next morning. But while we were getting her settled we realized we needed to go back for the night. To leave Amirah with a whole new team of people that didn't know her at all was a recipe for disaster. For example, instead of putting her on the vent settings she had while in the ER (and home) that were working the completely changed them and she was having a hard time. Once they switched her back to the correct settings she immediately needed less O2. She was only switched back because Andy and I insisted they do it. For obvious reason we knew we needed to be with her for the night. It was good we did because she had a few little typical episodes (she flips out when she's pooping) we were able to help the nurses realize her behaviors.

We stayed all night and this morning when we talked with the PICU doctor and her pulmonologist we found out that her CO2 levels were very high. And this, more than anything is the reason that she is staying in the PICU for a couple of days. Her initial flu and RVS test where negative.

We are kind of back to where we were last week. Amirah still has very delicate lungs and the smallest little stress can send her into a serious respiratory distress episode. We are having some frank discussions with her medical team about if she is really ready to come home or if she needs to be in a rehab to help her for a little while longer. The biggest thing she needs right now is to continue to grow and become stronger.

As of right now the plan is to do some minor tweaking to her nutrition, vent settings and medications to see if this helps. After that we will have a clearer picture as to the next step.

I think that's it for now. I tried to include everything, but please ask if there are things I didn't make clearer.

Thank you for all your love, prayers and support. Please continue to send them our way.

Love is always