No more night feeding!

So one the big things Amirah is going to try this week is not getting feed overnight. Until yesterday Amirah would be feed via her food pump all night long. We weaned to just 4 hours instead of 8, but last night I forgot to set my alarm to wake up and turn on her food pump. She did great overnight without being fed and after speaking with her nutrionist we have decided to try and stop overnight feeding. This is a big step and I am pretty excited for her.

Also, here is a video I made to day of Amirah. She is soooo close to crawling since coming off the vent during the day.

Trach Collar All Day!

Amirah is now off the vent 10-12 hours during the day!!!!! We are now set up to travel with no vent and we are soooooo excited!!!!

Here is a photo of how she looks with her new look :)

Now reporting from Austin!

So we have been here in Austin for almost 5 weeks. In so many ways it feels like we just got here (because basically we just did), but in a lot of other ways I can hardly remember what it was like before.

We found a great townhouse the first day we went looking. We have a great few off our back balcony of the Barton Creek Greenbelt. We are about 5 minutes away from downtown Austin and generally we are a short drive to lots of things. And as a bonus we are 2 1/2 miles from Andy's job! He generally comes home for lunch everyday and has the shortest commute of his life.

We haven't really started exploring the area too much but we are looking forward to experiencing all that Austin has to offer. Some of this can't happen until we have someone that can care for Amirah. And this, honestly, has been the worst part of moving. It's taken a little longer than we thought to get her nursing lined up and might not be able to get on nursing coverage until the second or third week of June :( We have place an add looking for an care giver that has some general knowledge of Amirah's needs, and we have had some good response. We are hoping that one of these people works out so that Andy and I can at least get out on our own a little bit.

I thought it might be a little harder to be home all day with Amirah with no help, but thankfully Amirah is doing so great that its really not that bad. I think the feelings I get by the end of the day are just the feelings stay at home parents just get. It is a help when Andy comes home for lunch because then I at least get some adult interaction in the middle of the day.

We now are working on ways to get a second car. We are so grateful that Andy does work so close to home, because on days when I really need the car I take him to and from and am able to have the car all day. I have yet to go to any Mommy's groups, but plan on attending some local ones very soon. Now that we are feeling more settled I am ready to meet more local people.

Amirah seems to be thriving! She is growing and discovering so many new things. She is completely off oxygen support while on the vent and is on the trach collar 8-10 hours a day. Her eating is slow going, but we hope to resume her therapies in June. She also now has 5 teeth and has sixth one about to pop through.

Its been such a change to move to Austin, but its still pretty exciting. My mother is coming for a visit in June and I am looking forward to having her here for the week.

I guess thats all for now. Next time I will post photo's.

We are moving!

We are moving to Austin, TX in TWO WEEKS!

We just found out yesterday. Gratefully Andy got a job. And not just any job, but a great job!

We have a TON to do in order to out of here in two weeks, but we are excited. And to be honest, in addition to being super excited, I am scared and a little sad too. I am very close with my family and if I think about it too much it makes me sad to think about living so far from them. But at the same time I am VERY excited about the future and leaving in a new place. And REALLY glad to be moving away from "winter".

As of right now we are planning to fly to Austin as a family on Sunday, April 17th. We don't have an apartment yet, but we are working on that and hopefully we will have one within the first week we arrive there.

That's all for now. I know we will be extremely busy for the next 2 weeks, but I might try and update some. In addition, I might just need to vent my feelings, and this seems like a good place to do it :)

We've been slacking on the posts....

We haven't updated the blog in FOREVER! Sorry about that. I would really like to update more and am going to make a better effort.

As for an Amirah update... those on Facebook probably know a lot of this....

About 2-3 weeks ago Amirah starting sitting on her own! She gets better and better everyday.

In February Amirah got her first TWO teeth!

In early March Amirah ate food via her mouth for the first time! She only eats about 5-10 spoons of yogurt at a time, but we work with her everyday to eat. Eating via her mouth is going to be a slow process, but it's so exciting the progress she has made.

As of March 14th Amirah has been approved to start trach collar trials. This means she will have a little bit of time everyday OFF the vent. We are waiting for delivery of the items we need for trach collar to arrive. We are hoping it arrives this afternoon. (After I wrote this the supplies arrived and now we are waiting for Amirah's Respiratory Therapist to arrive to set it up for us. I hope to post photo's of her on the trach collar later this afternoon!)

I can't brag enough about how proud we are of Amirah. She "talks" more and more everyday. She definetly says "Daddy" (so clear sometimes its shocking lol), and I have heard her say "Hi" a few times. She is a very intense little girl when she is introduced to new things, people, places etc.

As for me and Andy.... overall we extremely happy and content. We do have a few stresses right now. First, Andy has been out of work since November. He has been on numerous interviews, but we are still waiting for an offer. A surprising number of the positions have been canceled after the interview process do to cancellation of the projects. But we are positive something will happen soon. Things are extremely tight financially right now, but we truly know how blessed we are to have a safe, warm home, a baby who is thriving, family and friends that love and support us, and to have each other.

As for me... I have my moments. Most of the time I am just content playing with Amirah. But every once and a while I get overwhelmed when I think back over our past year. I have to remind myself to let go of the past and be in the present. It's funny, when I remember all that we went through last year I feel more upset than I did when I was actually going through. I guess it's a blessing in a way I didn't feel all that upset when it was going on. Both Andy and I have been told by numerous people who work with us and Amirah how much our attitudes have helped Amirah get to where she is today. For that I am extremely grateful.

Since the earthquake/tsunami of last week I have been reminded even more so about how blessed we are at the moment. I belong to a forum of other trach parents and trached people. One of the parents from that board lives in Japan. She and her family (husband, 2 year old trach son, and 6 month old baby) have been trying to get home to Canada since last week. It's frighten to think about all that she is having to deal with at the moment and my thoughts and prayers are with her and her family. You can read about and support them through Facebook, their page is "Help Baby Makeek Now".

That's all for me right now. Andy is going to add something now....

HELLOOOOOOO AMIRAH NATION!!! We have been gone for awhile haven't we! We know so many of you are our friends on facebook, so you are aware of a lot of the progress Amirah has made. As you can see, she is thriving, and we are so very, very grateful for that.

Jo is not the only one to get overwhelmed when think about the past year. Last night when we put her to bed, I flashed back to the day she was born, and how small and fragile she was. I realized that then, we never really panicked, and that we managed to handle it with a grace that (at least for me) is not that normal. I guess there really was a power looking out for us. I was hit with more of a feeling of panic last night then I was then.

The last few months over all have been great. It really is true what they say; things happen for a reason. While it has sucked and been very difficult financially the last few months, being home with Amirah and getting to be a part of her life has been a godsend and a blessing. I got to do what a lot of new fathers don't get to do. I was home with my baby when she first got home for the last few months. It truly has been a blessing being home and getting to be a part of her development.

Jo is amazing. The work she does is amazing. and if any guys are reading this.... If you haven't seen up close and personal the work a mother does, then you don't get to say crap. Its been wonderful to have this time with my family. And I am reminded all the time that as difficult as things has been, this has also been one of the happiest times of my life. It reminds me that no matter what, I am a very lucky man.

I will, try to help update this thing on a more frequent note. Between the job hunt, school, and the baby, its surprisingly busy at times.

Until next time...

Love is Always.

Amirah with Grandpa :)


Amirah with our cat Rodrigo


A photo from Amirah's 1st Birthday Party. Photo includes my parent's, all my siblings and their husbands or wives, and all off my nieces (the two oldest nieces are not here) and my only nephew :) It was amazing to have them all gathered together for the celebration of Amirah's birthday


Here is my new favorite shot. im still amazed when I look in a picture and I see so much of myself, but of Jo as well!

Happy Birthday Amirah!

Again, it has been too long since we updated here. Things here are are pretty typical for us. Amirah is growing (she weighed 19lbs 15oz yesterday at the pediatrician!), she is learning (she sits up for up to 1 minute on her own), she is "talking" more (she said Dada for the first time last Sunday), she is working on her oral skills (she sucked on a pacifier for 15 minutes last night - I was crying I was so happy for her). She amazes us everyday. She makes our hearts swell with love every moment. Andy and I are always saying to each other how happy and content we are (even though Andy is still out of work, neither of us have never been so happy in our lives).

All that being said, I am having moments of extreme sorrow. I start looking back at this last year and become overwhelmed. At times I can't even remember all the things, and at other times little details come rushing in. It's both hard and easy, and not very easy to put into words.

Andy here.

Well folks, as you can see above, Jo is having a hard time. Its a mixture of joy and sorrow for us. Its been such a crazy, tough, and in some cases LONG year. Jo and I feel as if our relationship, our faith, basically everything has been extremely tested. Yet, somehow, we made it through the year! I am happier then I have ever been. I have this beautiful, amazing little girl who makes me laugh every day, and just appreciate the little things. Its been a year of tears of sorrow, laughter and Joy. It's less then 14 minutes till midnight, and my baby girls birthday. I am looking at her and Jo snuggle giggle and laugh, and it fills my heart with joy.

Jo and I both know that there will be trials and tribulations down the road, and that not every day will be filled with ease. However, as you will see in the video that Jo and I are so happy to share with you, the key is not to focus on the past, but to "let it go" and look forward with joy and happiness in your heart to everything that is to come.

To all who read this: I hope this past year has brought you the joy, happiness pleasure, and yes, luck, that it has brought us. We had over 2000 photo's from the past year and had a hard time condensing a year of photo's into a 5 minute video. We think we captured it. Please, enjoy the video. We look forward to sharing this new year with you.

Love is Always,

Andy, Johanna and Amirah

Click below for the video ")
Amirah's 1st Year - A Year in a Life

Growing, growing, growing

It's been a month since we updated. While things have been busy here, they have also been kind of the same so updating seemed like it might be boring. But since it's been a while I figured I would.

Amirah is doing great! At her last doctor's appointment (over a week ago) she weighed 16 1/2 pounds! She's now almost 11 months old! We can't believe how fast this year went. She has been evaluated by early intervention and overall for a baby that was born at such a low birth weight, spent about 9 months in the hospital, and is dealing with some medical limitations she did great. They placed her between 3-6 months for a variety of development assessments, and considering all that I just mentioned, and her adjusted age at the time of the evaluations we were so happy.

We start her PT and OT therapies this week and I know that this will help her tremendously. Her goals for the next six months included sitting unassisted, increasing her muscle tone, getting her to more age appropriate play. We have a swallow study scheduled for this week to see if she is in danger of aspirating food taken by mouth, and if she is cleared by this test we plan on starting her with some speech and food therapies.

Amirah is a joy to be around. She is a happy content baby. She loves to "talk" to her dad and her nurses, to blow raspberries and to flash heart melting smiles.

We have had a few scary moments. These usually envlove her turning blue and needing to be give a few breaths with a ambu bag. One time this happened while we were at the doctor's office and the nurse who was in the room with us got scared, and called in the pulmonologist in the office that day. By the time he came in Andy and I had Amirah calmed down and back to her happy pink self. The doctor walked in and said "oh, its you guys....your fine."

It's hard to explain how our life is. There are days when its a breeze and days it seem over whelming, There also times when its a little sad. Sad that we can't just throw Amirah in the car and go visiting, or out to dinner or to the store. It takes a lot of planning and at least two people to get her packed up and out the door, and at least 2 people need to be in the car. The car is a WHOLE other story. But I will just leave it as our Ford Focus is barely big enough to have a baby in, let alone a baby with a ton of medical equipment.

I guess I am just blabbering away at this point. So I will stop now. But before I do I just want to add that we had a FABULOUS Thanksgiving with my parents. The house was over flowing with love and warmth and I wouldn't trade my life for any thing.

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

WE ARE HOME!!!!!!!

As you may already know, we are home. I just really wanted to have a post titled this.

It's been 2 full days since Amirah got home and its been great. I will let Andy give the numbers about how long we were in the NICU.

It has been amazing to have her home. Almost like she was never anywhere but home with us. We are slowly getting into a little rhythm. But most of all we are just ecstatic with having her near us 24/7.

The first night she was home was a little tiring. We didn't have any nursing. But our night nurse was here for night two. It was easier than I thought it would be to have her in our home while we slept. I woke up a few times and came out to the living room to check on them. Amirah was doing great, mostly sleeping and pooping.

We have Amirah room all set up. And we (me, Andy and Amirah) slept in there the first night (we have a guest bed in there). But during the day we decided we didn't want to be stuck in her little room so we moved all her equipment to the living room. We have her pack-n-play set up and its been working great. Last night we left her and the nurse in the living room. We will probably do the same tonight. Both Andy and I are pretty tired. But I can see we will soon want to have Amirah (and her nurse) be in Amirah's room. Andy is a night owl, and I can tell he will want to stay out in the living room watch TV or playing video games.

Our home feels full right now. Full of love, happiness and baby stuff. It's like having Amirah come home put the finishing touches on our home. It's the most amazing feeling.

I can't say enough how much all of the love, support and prayers everyone sent our way really made the difference for me. It made a very very challenging experience easier. Thank you, thank you, thank you.

I will let Andy finish the post and decide what photo's to include....


(Andy)

Hello Amirah Nation!! It's been a while hasn't it? I think I just ran out of things to say for a while. I guess I have a bit to say now.

We are SO happy to finally have her home. It was 8 months, 10 days, 10 hours, 55 minutes in the Hospital since the day Amirah was born. The last few weeks (I would say probably since Amirah left Blythsdale and went back to the NICU) has been very difficult. A week or so after she was back in the NICU, I began questioning what we where doing there. It became pretty clear to me that Jo and I could take care of Amirah, and that all we really needed was some training on her ventilator, medication and her food. It has really felt like we where fighting to bring Amirah home.

However, I guess anything of worth is worth fighting for! She is home now, and Its been great. I would be lying if I didn't say I was not nervous. Amirah requires a lot more then food and a diaper change. It's critical some one keeps a close eye on her and knows what to do when she gets into trouble.

The Friday night, was my first real test. I told Jo and Carol (Jo's mom) that if each one of us could not take care of Amirah, on our own, with no safety net, then its us, not Amirah, who is not ready. Well, I guess Jo and I got to test that theory. Jo went to lay down for some well deserved rest, and as they say in the Navy "I had the watch". Things where going fine until Amirah suddenly began to desat (her oxygen levels started dropping). I looked at her, and she was showing me all the signs of choking and, and needing to be suctioned. Well, it scared me a little, because while I had taken care of her in this situation plenty of times before, that was my first time really doing it on my own, with no one over my shoulder. But I followed the lessons we learned, and while things seemed hairy for a moment (I was reminded once again why and how people sometimes freeze up in stressful situations. I paused for a good 10 or 15 seconds trying to decide if I should wake Jo up!) halfway through it all, right when I though I had really screwed up, I realized what was the matter. Amirah had to Poop!! When Amirah has to poop, you would think she is running the Boston marathon! She gets all dark and blue, she looks like she is gagging a bit (Jo and I realized that she often needs help right about then, so it's a good idea to suction) and then, all you hear is loud farting signs accompanied by a very fragrant odor, and then she relaxes, her color returns to normal, and I swear she almost always has a little smile on her face when she is done. But after a big poop, who doesn't right?

So, I changed her, rocked her for a bit, and when she was still a little unsettled (the really big poops after meals really bother her), I held her for a hour until she really relaxed and was back in a deep sleep. As she fell back into a deep sleep in my arms, it was that particular moment when I REALLY felt like a dad. I knew I was a dad, and I felt it before, but that was the first time I felt it so strongly. The way she snuggled into my arms, I felt like a super hero who has just saved the day. It was pretty normal for her, just something she goes through a few times a day, but for me it was really special. We had a repeat of the incident again late Saturday afternoon, but instead of sleep, I realized she was bored and wanted to play. So I set up her toys, got her seated just the way she likes, and when she was settled, I got my first REALLY BIG smile from her since she has been home. It totally made my day.

When Jo woke from a nap 45 minutes later, she was almost surprised to see Amirah up, and steadily batting away at her toys, happy as a clam in its shell, and smiling away. I was getting ready to prep a quick meal for us, and I felt really good then. I felt like I was taking care of my family, and I knew it wasn't just a feeling, I was certain of it. The uncertainty (at least for the moment) is gone now, and I feel really confident that Jo and I really know how to care for Amirah. Her night nurse, at least to me, is simply there to give us a few hours of well needed sleep.

So that's basically it. As I write this, Amirah is back in her pack and play, napping after playing with her toys for a hour, and Jo is napping on the other side of me, waking to remind me of the 7:30 am meds. (I am not to the point where I remember exactly what she is taking when, but I am slowly getting there. Having a chart helps enormously). I don't know what challenges tomorrow will bring, but I am pretty confident that the three of us can and will overcome them.

Here are a few pics of Amirah coming home, and of this morning.

Thanks for reading, and

Love is Always.

Andy

The princess in her tutu. How am I going to teach her football if she is wearing that?!?!? :)



Extremely glad to be going home.



Look at Sleeping Beauty :)



The whole Neighborhood knew we had finally brought her home!



Settled down in her new crib.


This is the first time mommy and baby got to lay down together. Its been a long time coming!


Finally, me and baby girl gets to watch some TV together!!



This is from Thursday night, as she slept in her pack and play.



We all love this shot!



Rodrigo has calmed down now that he knows whats going on. I think he now feels he is a guard kitty. Someone comes, and he will love you to death, so watch out!! :)



Its been a wonderful AND tiring weekend! (This was taken this morning as I finished this post) :)



Yup, baby knocked out too!!!



I will post a shot of her awake and playing with her toys soon! Its so cute! She looks so serious when she is playing with them!



Yup, even the cats tired. But he is still on duty. You cant see it here, but his eyes where open and he is looking at Amirah (one of her alarms went off). He is a good Kitty.




By the way: Its Jo and I anniversary!! We just realized together!! I think it can be forgiven with a new baby in the house right? :)

I so love my wife.

Thanks for reading, Amirah Nation!!

All tests are back. Scheduled to leave NICU at 10 am tomorrow!!!!!!!!

We are scheduled to leave the NICU at 10 am on Tuesday!!!

The end is always the hardest

I feel as though I have come to the end of my rope. I CAN NOT wait for Amirah to come. I am tired of being at the hospital all day. I am tired of dealing with new nurses, new team members and having to push for Amirah to be released. I am tired of coming in to the room and seeing Amirah not being cared for the way I care for her.

At this point it looks like Amirah should be home some time next week. We should have a clearer date after Friday when I meet with the nursing company.

Enough venting for now, here's some cute photo's of Amirah in the bath ...

In her first "big girl" bath...


Mommy giving Amirah her bath....

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.