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.

( 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....

27 weeks 4 days

Sooo, we left off that Amirah maybe have asthma and she had a rough night but was doing better with the breathing treatments. Well the day after I posted that, in the early morning hours, Amirah told the doctors and nurses that she didn't have asthma....she had a plug in a her trach!

You may be asking how she told them? Well she de-cannulated herself! (De-cannulated means she removed her trach) When the trach came out they put a new one in, and when the looked at her old trach the realized there was a pretty good size dried mucus plug in it. After they put in the new trach she breathed MUCH better.

Since that day she has being doing much better. The still gave her a 5 day treatment of steroids, and are still giving her some Pulmacort and Abuteral. When she first started having her "episode" they were giving her these breathing treatments every 2-3 hours. The doctors didn't want to just stop treating the asthma, so they just started slowly weaning her off the medications. now she gets them 2 times a day and they do seem to help keep her airways nice and open.

One other kind of scary thing happened last Monday. I was there for her bath time and the nurse was my helper as I did all her cares. At the end of the bath we had to clean her neck and change her trach ties. You really need two people to do this part because one person has to clean and put in the new trach tie, while the other person holds onto the trach and make sure it doesn't come out with its not tied on. So, I was cleaning her right side and had hooked the new trach tie into the trach (which isn't exactly easy, imagine trying to thread a big needle, a plastic needle and much bigger, while Amirah is squirming and pulling underneath her chubby non exhisistent neck) and then the nurse, trying to be nice and having me do all the "hard" stuff, started moving her so I could do her other side. As she moved her her trach came out... the nurse tried to slip it back in as she realized it was coming out, but it didn't work. So, we calmly laid Amirah down, the nurse at the same time grab the new trach from below her and pressed the emergency call button. I was standing there calming soothing Amirah and holding her still and her head back so the nurse could get the new trach in. Within a 30 seconds of the alarming being activated 15-20 staff came running into the room. I quietly stepped back to let a doctor in, but the truth is we had already solved the problem. We had accidentally de-cannulated Amirah but had gotten her new trach in all in less than a minute. Me and her nurse had actually stayed so calm during the whole thing that when the other nurse heard the emergency call go off she walked out of the room to help respond to it and saw all the people running toward the room she just left. While it was a little scary while it happened I am glad that it happened. It was a great learning experience for me and while I am pretty sure if it were to happen again at home I might be more scared I am pretty sure I could handle it. The other thing it taught me was when we are cleaning and changing her trach ties we won't move her around but each do a side.

I had made the decision when we found out she wasn't going to Blythdale on July 8th to start being more involved with her daily cares while I was visiting her. So pretty much since that day while I am visiting her I do everything for her. The physical therapist starting call me Dr. Mommy because she was blown away with everything I can do for her.

Last Sunday while we were visiting with Amirah we were told that by her nurse that day that she was extremely impressed with all that we could do with Amirah. She told us that she had never seen parents be as involved with their child's care as much as Andy and I are, especially for a "special needs" situation. It felt shocking really. I mean what choice do we have....she said we had other choices, she's seen parents not be involved at all (hardly visit) or only observe (stand and watch the nurses do all the work). As we talked about it more I could understand it a little more. These other parents felt what we are feeling... angry, sad, "why me" kind of feelings. I guess the big difference is our own attitude. Andy and I could choose to sit and wallow in are hard times and go on with our day to day lives. Or we could do what we are choosing to do and that is to accept our situation (a situation we have no control over) and truly make the best of it.

It makes both Andy and I feel good to know that we know how to take care of Amirah. It makes us feel more like "regular" parents. We know it makes Amirah feel good to have us do this with her. She always does better with us and calms down more quickly when we are there. And she almost always gets into Andy's arms and snuggles into is chest and passes out! You can almost her a giant sigh coming from her as she relaxes in his arms.

I think that's all for now. Sorry this blog has turned into so much about how me and Andy are doing and less about Amirah.

(Andy writing) Hello Amirah Nation! I hope you are all doing well. I just wanted to quickly comment on some of the things Jo has said. As you can imagine by now, the NICU is an extremely difficult place to be in. All the babies that are there have a major issue in one form or another. It's sometimes very difficult for Jo and Myself to see a baby in the room, only to be go home within a week or two. It's extremely difficult seeing that when we see the child on the same equipment that Amirah has been on or is on. With that said, we knew from the start that we have been very, very blessed that we are able to be so close to Amirah.

Westchester Medical Center, and particularly the Children's hospital, is a Tri- Regional medical center, in which other hospitals can send there patients to them when they require extreme critical care, or something that falls under a specialty that a local hospital can not handle. There are 15 major medical hospitals in the tri-state area that can fly a child by helicopter to the Hospital within 15 minutes. When Jo and I go to the hospital, it is not uncommon to see cars in the parking lot from as far away as Pennsylvania or Massachusetts. There are parents that have to drive two and three hours in order to see there child. Jo and I find it difficult enough to get there every day, and we are only 20 minutes away, assuming there is no traffic. However, the Tappan Zee Bridge seems to have a accident every single day, and I simply can not remember the last time we went where we did not sit in stop and go traffic either going there or coming back. A 20 minute trip can easily become a hour or more.

I can easily understand why other parents may not be as involved in there child's care as we are. The NICU is intimidating. When your child first arrives there, you can barely touch them, you can't hold them, they have what looks like a thousand tubes and sensors coming out of them, and it seems if you even look at them to hard, their systems start to crash. You have no idea when your child will come home, and to be honest, when it first starts you are trying very hard to push away thoughts of your child not surviving. Its hard to be there and see other parents in the waiting area weeping, not knowing what there situation is, but at the same time completely understanding.

I was told very early on that parents tend to do one of two things. They tend to be there almost non stop, or they are there, then they have very few visits until they come home. I can understand this. Its mentally and emotionally draining. Jo and I decided early on that we would do whatever it took to bring Amirah home as soon as possible. That means that she might come home, not fully healthy, and if that is the case so be it.

A few months ago, we told you that as Amirah gets older, and we continue with this process, we would talk about how Jo and I feel, and how it effects our lives. We want you to understand the emotions about what is happening, because other wise, this blog is a pretty crappy medical site about a preemie. We don't want to sound like we are complaining. However, I want to share with you why I think it's important that we discuss this with you.

When Amirah was first born, numerous people would ask me how she was doing, and they understood the mental and emotional pressure that we are under. Now, 6 months later, I think a lot of these same people really have a hard time wrapping there head around the numerous challenges Amirah is facing. I sometimes suspect (although I could be completely wrong) that some of these people can not understand how a child can look so cute and healthy, yet still be so sick, especially after all of this time. It's beyond frustrating when I walk into work, and someone I haven't seen in a 2 or three weeks ask me "So how long have you had her home?" or remarks in surprise "She is STILL in the hospital!?!" My supervisor last week was literally stunned when I had to explain yet again how sick she really is, and how difficult it is to continue with daily life with a child in the hospital. I had to explain to him how she has great days, even weeks, then has set backs that erases all of that hard earned work. He wasn't even aware that she was still there! Yet others I talk to, tell me about the scary time their child went to the hospital for one ailment or another, and state "I understand how scary it is!", not realizing this isn't 100 degree fever, or a bad cold, or a broken bone. I try not to really discuss it anymore when at work, and I actually almost dread being asked about Amirah. It sometimes feels like others think I am making it sound worse then it is, or that they are asking as if I expect it of them. Jo has stated feeling this as well from people. If there is ANYTHING I could stress to you, it would be the desire to wake up, go to the hospital, and find Amirah is fully healthy, and ready to come home, and that we can began being a normal family. There is nothing more we desire then to turn this blog from Amirah's struggle for life, to a simple blog of the cute things babies do, with pictures and videos and normalcy. However, the universe for its reason has saw fit to have the three of us go through this process instead.

So, I want to stress while this blog is about Amirah, as her parents and primary caregivers we feel we have to discuss how we are doing emotionally and mentally. We hope that by in sharing how we feel, we may better be able to handle this, and provide insight into the difficulties, stress, and yes joy, of having a child with special needs.

I want to thank Liesel yet again for al the love and support she send our way. I meet Liesel on line while I was in the Navy, and while we have never met, I am happy to say she is one of the closest friends I have. There are others, but she constantly lets us know that she believes in what we are doing, and that we have a huge network of support and love, and that there are a LOT of people that are thinking about and praying for Amirah on a daily basis. This, more then anything, is what this blog is about. We have to remind ourselves constantly that we are lucky, for while Amirah is a special needs baby now, in five years the possibility remains very strong that she will just be a normal five year old girl.

So, while this blog is about Amirah, we will continue to discuss the three of us, as a family. I hope you understand why we feel the need to do this. Thank you ALL for your support.

Love is Always,

Andy

6 months old!

I can't believe that it has been six months since Amirah was born!!! I am so grateful for all that we have and for Amirah.

Amirah has been doing okay this past week or so. A few bumps, but overall we are doing well.

As you know, last week we found out we have to wait until at least August before Amirah can go to rehab. There has been a little talk about her coming straight home instead of a stop at rehab, but we don't know how that will work out yet.

As you might know, Amirah was able to come off the CPAP and Vent last Tuesday. She did pretty good on it for a few days. But on Saturday she had to go back onto the Vent. She had been doing pretty good on it. That was until last night...

Amirah did have a little bit of a rough night. She had a pretty bad lung spasm. Basically she wasn't moving any air through her lungs. They had to give her continuous breathing treatments and then started her on IV steroids. They also had to give her a few doses of morphine to calm her down.

Today the pulmonary doctors came for a consult with her. Basically Amirah has asthma.

Her treatments for now are 2 different types of inhalant asthma medications, an inhalant steroid, and an IV steroid (for 3 days). Because of the IV steroids they restarted her on Prilocec. She has also been having high blood pressures, so they are giving her blood pressure medications as needed. And finally she will probably need to have another surgery. At her incision site for the nissan there seems to be a little hernia (basically her intestine is coming through her abdominal muscles). This is not an emergency and it might be a while before she has this surgery.

I think that's all the development from this week.

It's not been an easy week. But we still are staying positive. Last week when Andy was off work we both got to spend so real quality time with each other and with Amirah. We both had the opportunity to do more of the things Amirah will need us to do for her when she comes home. Things like change her trach ties. Clean her trach and her g-tube. Adjust her oxygen. Move her around with all her tubes. We also got to do some of the fun things like snuggle her to our chest. let her sleep in our arms and kiss all over her cute little body.

I am becoming increasingly impatient to have her home. But I read something today that has helped me refocus..."Although waiting can feel like agony, it may be exactly what you need to do to prepare for the next stage of your life." This really hit home for me. Not only has it helped me refocus but it address a thought that had been rambling around my head for a while.

Andy and I have had a whirlwind year. We have only know each other for a little over a year. So not only are we still in our "honeymoon" of our relationship, we both went from single lives to married with a sick baby in a very very short amount of time. I would NEVER change this. But I have had thoughts about how this extra time Amirah has given me and Andy to "adjust" to our new lives. I don't want you to think I am glad that Amirah came early and has been in the hospital for 6 months, because I am sure you know how much I want her home. However, being the eternal optimist I am, and almost always seeing the glass more than half full, I am thankful for this extra time we were given.

That being said, I want to put this out into the universe.... I AM READY TO BE MOM AND AM READY FOR AMIRAH TO BE HOME WITH US!

That's all for me tonight. Thanks for letting me vent.

Going to Blythedale!!

We found out this afternoon that Amirah is scheduled to transfer to Blythedale next Wednesday!!!!

We are so excited. First and foremost, it means she is one step closer to coming home. Second...Andy has vacation next week so he will be able to be there when she transfers and will be able to spend a lot of time with her.

Other than transferring... not much else going on. Amirah is doing great. She is continuing to come down on both her vent settings and her oxygen requirements.

I am really trying to remember to be in the moment with all this. At times I find myself getting very very impatient to have her home. I know she will be here soon but sometimes that just not enough.

Everyday Amirah's personality comes out more. Sometimes as I sit with her she just makes me giggle. Her eye and eyebrows are so expressive. Speaking of giggling. I think I heard a small little giggle like sound come from her today. I consider us very lucky. Lot's of trach babies don't make any sound. But Amirah has a "leak" in her trach and is able to make some noises. Sometimes she cries, sometimes she coo's and now hopefully sometimes she giggles :).

That's really all for now...I'll close with sweet little picture of Amirah sleeping in my arms...

Week 23 Day 4

Let's see...sorry for the delay in updating, just been a little busy.

Amirah's surgery went very, very well. On Monday morning we (me, Andy, and my sister Jessica, and my niece Olivia) got to the hospital about 8:30 or so. Amirah was awake and in a pretty good mood. Right before she was due to leave for the OR the Physical Therapist came and worked with Amirah. They PT totally relaxed Amirah, and she stayed asleep for the transport down to the OR.

Andy and I walked with the team and met with the surgeon and the team that would be there for her surgery.

We then met up with Jessica and Olivia. We knew we had about 3-4 hours until her surgery was due to be over so we all decided to go get some food and go to a moive. I know it might seem a little weird that we choose to go see a movie while our little baby was having surgery, but it was a great way to pass the time instead of sitting around worrying. We went to see Toy Story 3 and it was great.

We got back to the hospital about 3 hours after Amirah had gone in for surgery and just as we got there Amirah was coming back too... The anesthesiology told us that she did great. We were soooo relieved.

Amirah was still pretty knocked out (they had to give an extra dose of drugs because she apparently has a strong liver and had started to come to in the middle of the surgery).

We stayed with her for about another 20 minutes or so and then decided there wasn't much of a reason to stay. When we left she was resting comfortably and her vital signs were good.

She continued to do pretty well. She did have a few blood gases that weren't to great, so they increased her ventilator settings. We were expecting this so it didn't surprise us.

So for the first 2 days she was basically just sleeping. They hadn't started feeding her or anything. Her blood gases slowly got better. By Wednesday she was doing really good so the surgeon started her on some pedia-lite. By Thursday she continued doing great so they her back on formula. Her vent settings were almost back to were they were pre-surgery. Things were doing great.

They slowly increased her feedings and she continued to do great.

As of today, she is now on full feeds and her vent settings are back to what they were pre-surgery. Andy and I talked to one of her doctors today, and it seems like they will probably be contacting Blythdale tomorrow to discuss when Amirah will be transferred over there. This is much sooner than I thought this would happen and I am trying not to get to excited about it yet. I will keep you updated as more develops.

For other news about Amirah....she gets cuter and cuter every time we see her. When she see's us she gives us HUGE smiles. I am trying to capture one of them on camera, but they go quick :) We see more and more of her cute little personality coming out. Andy loves to watch her and really gets a kick out of her when she, out of the blue, will ball up and her face, cry and then give us a giant pout...I know we maybe shouldn't find this cute, but we really do.

I think that's really all for now... I feel a little bit like we are in a holding pattern at the moment. But am ok with it. I am just so thankful that this surgery wasn't a giant step backwards as we had feared it might be.

Thank you for the continued love, support and prayers.

Love is always...

Surgery postponed until Monday and Andy's experience with the Blue Faced Priest

Yesterday we woke up and got out of the house early so Andy would get a chance to see Amirah because he hadn't seen her since last weekend. We were immediately stuck in traffic that was moving less than 5mph. I tried to stay calm, I really wanted to get to the hospital before she went down to the OR. After about a half hour we finally made it through the trouble (a bad accident that moved 3 lanes of traffic down to 1).

We got to the hospital by 8:15 and Amirah was awake and in a very good mood. She immediately gave Andy her little smile and looked very happy and comfortable. The nurse told us that she should be getting the call any minute for Amirah to be transferred to the OR.

The Respiratory Therapist came in to get her set up for transportation. Then about 45 minutes later they got a message that her surgery had been moved to about 12:30. While this was a slight pain because Andy was barely functioning on 2 hours of sleep, we knew that what ever was suppose to be would be.

Andy and I then napped in some chairs. then around 10:30 or so the doctors where doing their rounds and asked Andy and I to come in while they did Amirah's. Apparently there was a little mix up with her lipids and the TPN's she was receiving. While it hadn't gone on long, they did just want to let us know it happened. They were just going to monitor her blood sugars.

Amirah fell asleep at this point so we went to find Andy some breakfast.

When we went back upstairs to see Amirah her surgeon was looking for us. He was paged and came back to her room. He then told us they were canceling her surgery for that day. Apparently the OR was having some fire alarms that wouldn't clear and the surgery that was scheduled before her hadn't even begun. The exact words the surgeon used was that "it was not optimal to start her type of surgery so late in the day on a Friday". I think he was expecting me and Andy to through some sort of fit. But our reaction was calm and basically we told him we were okay with what ever needed to happen. We definitely wanted the situation to be optimal.

Soooooo, after we got that bit of news Andy held Amirah for about 45 minutes. They both feel asleep :). We put Amirah back in her crib, changed her diaper, cleaned her up and got her ready for some food. We left then and went out to lunch with my parents.

We got home and I immediately slept for about 3 hours. Then we hung out with my parents for a little while and Andy went to bed about 6:30.

Today we feel refreshed. What we told the surgeon about being ok with what ever needed to happen is the truth. In addition, I think it was better for Andy that the surgery was moved. He was really able to decompress a little from the week. This work week was particularly stressful for him. I won't go into all the details, but basically it started with his glasses breaking that morning, an emergency landing for mechanical difficulties, a hotel with no hot water, and worst of all for Andy no amazing BBQ food in St. Louis. He then got home at 10pm on Wednesday night only to have to be at work from 7am-4pm and then again from 7:30pm -2:30am. And then for that second shift they weren't even able to do the work that they needed to do. Needless to say it was a ROUGH week for Andy and he really needs a relaxing weekend.

Amirah's surgery has been rescheduled for 10:30am on Monday. Like I said this give Andy and I a chance to relax and to get back in line with our positive thinking. I know that every thing happens for a reason. And to use the language my mother uses... this is Divine Order.

Please continue to send us love,thoughts and prayers. And thank you for all that you already do send us. All the love that we have surrounding us is amazing.

Love is Always.

(This is Andy here)

Hi.. I wanted to include one very strange incident that happened to me on the way home. You can interpret it how you wish.

My flight leaving ST. Louis was at 1 pm, so I was at the airport by 1130 or so, and to say I was dead on my feet would be an understatement. After going through all the crap of airport security, I arrived at my gate. When I got to my gate I immediately noticed two things. The first, was my gate appeared to have US Airways rocking chairs! Real, old fashioned rocking chairs, with the US Airways logo on them. I have been flying around the world since the age of 13 or so, and I have been in numerous airports. I was pretty surprised as I had NEVER seen rocking chairs in a airport. The second, even stranger thing, was seeing a man that appeared to be a priest sitting in one of the rocking chairs. What made him stand out to me was the fact that his ENTIRE face was blue. As in Navy blue. Like a giant birthmark or something. His face was blue, but the rest of him was a normal white skin color. He was wearing all black, with a dark navy blue suit jacket. I figured he was a priest because of the clerical collar. It was VERY strange, but at the moment I ignored it, being that I was tired and all I wanted to do was get on my flight.

So I found a seat, sat down, and while listening to my book, I surfed the internet on my phone (this of course if you know me consists of surfing the news sites). I was feeling extremely tired right about then, and everything had taken on a dream like quality. I will remind you that I was exhausted, so there is a possibility that I was actually dozing when the rest of this occurred, or I could have been having a "waking dream".

While I was sitting there, I suddenly got the strong feeling that I was being watched. I tried to ignore it at first, but it was so strong that I HAD to look up and around to see who was watching me, and why. When I looked up and to the right, sitting in a rocking chair next to the blue face priest was ANOTHER priest! This one looked to me like he could have been the blue faced priest's twin brother, except his face was normal. He was wearing a white seersucker suit, with a black shirt and a clerical collar. As I looked at him, our eyes caught, and he suddenly gave me a subtle smile. This really threw me, because I was thinking "What is THAT about?!?".

The priest in white, still looking at me, leaned over to Blue Face. He whispered something to him, nodded his head in my direction, and glanced back at me again. Blue Face turned and glanced at me as well. I don't know why, but that really freaked me out, and I immediately sat back in my chair and looked at my phone. I couldn't tell you why I felt I needed to do it, but I did. I sat back, had a mental shrug, and went back to the news stories. I glanced over to them a few times, but every time I looked, they where in a animated discussion. I looked over once as a group of people walked over and greeted the two of them. I saw them leave, and even come back. Something to keep in mind, when ever I am in an airport, I try to really pay attention to what flights are called at what gate. No flights where called near any gates near me, until my flight was called. There were perhaps 25-30 minutes that went by from when I sat down, to when my flight was called. When I got up and boarded the plane (it was a small commuter jet) I looked around for the priests, but they were no where to be found. I really didn't think anything more about it, almost until I landed in NYC about 8 hours later. Yes, it was a HORRIBLE flight with me literally jammed into the worst seats on the plane.

I was really cursing my fate on the second flight, when I was crammed into the rear window seat (you know, the one that doesn't lean back at all, and has half the leg room of the other seats.) when I thought, maybe I should just count my blessings. My daughter has a hard, long road ahead of her, but she IS out of the woods. Recovery may be long, but one day she can be just a NORMAL little girl. Things could have been SO much worse. Hell, I had an emergency landing, and it was nothing really at all.

And that's when I thought of the two priests in the St. Louis Airport. I don't know why they popped back into my head then, but they did. I told my wife and mother in law about it. They think its a little strange too.

Maybe I had a lucid, bizarre waking dream, all tied up in all the stress and anxiety that has become our lives. Maybe it was just a mind fart. Hell, for all I know, it was just two priests in an airport, one with a birthmark, and my sometimes imaginative mind made something out of nothing. In light of all that is happening however, and talking about it some, we thought maybe I should share this little experience with you.

As always, thank you for your love, support and prayers.

Talk to you later, Amirah Nation.

Less than 12 hours from now Amirah should be in surgery.

Andy has an incredible crazy week and is working a double shift today. He probably won't be home until 2:00am at the earliest and we will be leaving the house around 7:00 to head over to the hospital.

G-tube Surgery Details

So, Amirah has to have another surgery. We were really hoping she wouldn't need to have this one. However, after discussing it with all the doctors we have agreed to it.

Basically, the main reason for Amirah to have this is because she has Chronic Lung Disease and severe reflux (she refluxes all the way up to her trach) and she is in a lot of danger of aspirating. This can be be EXTREMELY dangerous for her and can even cause permanent scaring to her lungs.

Another thing with the g-tube is that Amirah gets bigger she requires more and more food. The NG Tube (her feeding tube she has had since birth) becomes to small for her.

And finally, with the placement of the g-tube they will be able to stop the NG - Tube that Amirah clearly hates. She is getting better and better at figuring out how to pull it out. Two nights ago she pulled it out 3 times. And while its relatively easy to put it back in she doesn't like to cooperate. They NG Tube doesn't "hurt" her but is extremely irritating. With the removal of the NG tube she will no longer have to have things taped to her beautiful face :)

In addition to putting in the g-tube the will be doing a nissen fundoplication to help with her reflux. What they will do is take the upper part of her stomach and wrap it around the lower end of her esophagus. This will help to tighten up the the opening at the top of the stomach and help the stomach contents from refluxing back up the esophagus.

While the g-tube will be removed at some point, the fundoplication doesn't get reversed. As she grows her stomach will also grow and there shouldn't be an problems with it. Also, Amirah will still be able to learn to eat via her mouth as she gets bigger which was a worry of mine when I first heard she might need this surgery.

We don't know what time the surgery is scheduled for yet, but should have that time later today. From what I was told yesterday the surgery should take about 3 hours or so. The surgeon that will be doing her surgery is the the same one that did her hernia surgery.
Like I said before, Andy and I aren't thrilled with the idea of another surgery, but we are really working on remaining positive and supporting Amirah in her what ever she needs to get bigger and get her home.

I could write about how nervous or upset we both have been, or how unfair it all seems. But at the moment I don't feel that way. Truth is I still feel blessed. I feel like the "I like girl" that is all over the internet ( http://www.youtube.com/watch?v=qR3rK0kZFkg&feature=player_embedded ) I could list all the things that we are blessed with, but don't want to bore everyone.

Andy and I are just starting a new book recommended to us by our therapist. It is called The Biology of Belief ( http://www.brucelipton.com/biology-of-belief-overview ). I have only skimmed it at this point but I am loving the ideas that are presented in it. I will probably write about it or its affect it has on me as I read it.

I guess I don't really have much else to write at this point.

Here are a few photo's of Amirah from the past few days.




This is a vision board we created for Amirah. It has drawing of healthy lung ways, drawings of unhealthily lungs crossed out, and positive affirmations about her lungs. We are really working on having Amirah surround by positivity. This includes trying not to discuss some of health challenges around her, and really practicing inner calm when near her. Not only do I think it helps her, but it really helps me to stay present and positive and to enjoy my visits with her. I plan on creating different vision boards for her and changing the affirmations has different needs are presented to us.

As always, thank you for all the continued love, support and prayers through all of this. We really couldn't do it without everyone.

Love is always.