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.

Surgery Scheduled for Friday

Amirah is scheduled to have surgery on Friday. We don't know the time yet, but will find out tomorrow. She will be having a Gastronomy Tube (g-tube) put in. I will write more tomorrow about the details. While the idea of her having this surgery isn't something we wanted, we know it is what she needs to keep growing big and strong. Please send lots of love, thoughts, prayers and positive energy to her and to us.

21 Weeks 3 days

I can't believe that tomorrow Amirah will be 5 months old! Time really does move fast, even with all the challenges we are facing time still races on.

Ok... so Amirah update:

Amirah isn't quite responding the way the doctors had hoped. She is still requiring pretty high vent settings. So, this week (on Wednesday actually) the started her on Pulmicort. Pulmicort is a steroid that is inhaled. The steroids don't work instantaneously. The doctor is basically giving it about a week to see how her lungs respond. The goal here is to being able to start to wean her off the high vent settings.

If the steriods don't work a couple things might have to happen. One is that they really want to increase her caloric intake. The more calories she gets, the more she grows, the more she grows the stronger her lungs get. If the steroids don't work they way they want them to, there is a possiblity that Amirah might need to have more permaent feeding tube put in.

I won't go into what all that would mean at the moment, but will explain it more only if she needs it. Instead I want to ask that everyone just "see" the steroids working...Pray... send her positive energy...do a little "steroid dance"...what every it is that you choose to do. Just send all that light, love, prayers and positive energy right to Amirah's lungs.

The biggest thing we are concentrating on at the moment is her lungs. Other than that she is doing soooo great. The other day her nurse and one of the PT's was raving about how good she is doing. She is right on track for what a 2 month old (Amirah's adjusted age is 2 months should be doing. She tracks people and things as they move. She brings her hands in front of her face. She gets her hand into her mouth. I've even glimpsed little smiles. I can't wait for her big smile to light her face!

So, that's where Amirah is at the moment. Andy and I are having a pretty good week. As usual we've had a few emotional up's and down's, but overall I feel like it was a good week. We have our second appointment with our therapist today and I am feeling positive and motivated.

Another thing I had the pleasure of doing this week was meeting a sweet little girl who also has a trach and her amazing mother. This family invited me into their home to see first hand what it is like to be home with a baby on a trach. Don't get me wrong, it is a LOT of work, but seeing this sweet happy baby just being a baby playing with her toys, looking up at us and smiling, laying and laughing and kicking her feet....well, it just warmed my heart.

In addition to seeing first hand, this baby's mom gave me some great advise. She was so open, honest, friendly...I can't say enough about her. I was truly moved with how great this first experience with an older trach baby was. The little one is about 9 months old ( she was born in Oct, but due in Jan) and she and Amirah have a lot of similar experience. If the mom is reading this blog I just want her to know how much she helped me this week. (I didn't want to use your name, just in case you didn't want to be out there like that).

Ok... that's really it for now. Today is the 1st anniversary of Andy and I's first date. We have been through a big year, but I am so very thankful for all that we have.

As always... please keep praying... Amirah, Andy and I feel the love and support.

Love is always.

20 weeks 3 days

Today was a good day :)

First, Andy and I had our first appointment with our therapist. We loved her and both left there feeling better and recharged and excited about the work we plan on doing with her. It felt really good to talk with someone about our experience and talk with her about how to work to make it more manageable. Nothing will make the experience we are going through easy, but I feel like the work we will be doing with her will help us feel more centered. I am feeling inspired and excited about it.

Second, we had a REALLY great visit with Amirah. She was awake for our visit and she was cuter than ever. She has discovered how to suck on her hand and I think she will figure out how to suck on her fingers or thumb soon. It so cute to see her do this... Here is a photo of her trying to get her hand in her mouth...
Its a great indication of her ability to feed and nipple that she was trying to suck on her hand. It was getting close to her feeding time so its an indication that she is feeling hungry and kind of gets that sucking should help her.

Both Andy and I had a chance to hold her today. While Andy held her he played with her and the new toy mirror we got for her. I'm not sure how much she really liked it yet but it was great to see.

Right before it was time for her to go back in her crib and eat she pulled out her NG tube. She seemed pretty proud of her self when she pulled it out. We don't get very many photo's of her without anything on her face so here is one.. It's a little blurry but you can really see her face.That's really it for right now. I just wanted to share our day with everyone. It is truly amazing how blessed we are.

As always, thanks for all the continued love, support and prayers.

Love is always.

20 weeks 2 days

It's been a long rough week. Let me start by saying Amirah is doing pretty well. She is getting bigger, (she weighs about 7lbs 4oz right now) and her lungs are improving. She had a follow up echo cardiogram on Tuesday and it looks as though her pulmonary hypertension has gone away, so they are weaning her from the nitric oxide again. She also had a follow up eye exam and her ROP has not progressed. Her blood gases go back and forth a bit, but the doctors are planning on slowly weaning her oxygen settings over the weekend. She still eats like a champ :) We aren't sure when she will be transferred to the Children's hospital, but think it should be in the next week or so if things keep going they way they are.

So, like I said, Amirah is doing great...me on the other... not so good. I have moments where I get overwhelmed with sadness and pretty much tear up and/or burst into tears. It doesn't make it easy to do "normal" things like concentrate at work or be out in the world. Seeing a baby or a pregnant woman sets me off too. It's not fun.

I went on a tour of the Children's Hospital today. The staff seems really great. Warm, caring, knowledgeable, helpful. I really glad about that. But I was really upset by the "institutional" feeling. It makes me so sad to think of her sitting in her crib in a room with 3 other babies when she should be sitting here at home with me and Andy. I try to keep the good things about it in mind when I start getting really upset... here are some good things about it:
1. Anyone, any age can come visit her as long as they are not sick. This means her cousins can come meet her. Olivia is especially looking forward to this. She was getting impatient I think because this week she suggested to her mother that maybe she could dress in a disguise so she could come into the hospital. For those that don't know Olivia, she is my 6 1/2 year old niece and she was also born about 3 months early.
2. It's one step closer to being able to come home.
3. They wouldn't send her there if she wasn't really stable. The Children's hospital does not take critical patients. They are sending Amirah there for rehab.
4. The visiting hours will work better for me and Andy to visit her right after Andy gets home from work. Currently Andy doesn't always get over to see her every day because if he leaves even 15 minutes later than his usual time we won't be able to get over to the hospital before the no visit times while the shifts are changing. This means we would not be able to go to visit her until after 8pm which means a late night. At Blythdale visiting is from 6am -10pm.
5. If we want, a parent can spend the night bedside. We probably won't do this right away, but will do it as we get ready for her to come home.

I know there are other things that I can mention, but those are the big ones.

Tomorrow Andy and I have an appointment with a therapist. I can't speak for him, but I am really looking forward to it.

Okay.. Since she asked lol.. Andy here. I'll try to be brief (No jokes about needing coffee now!) Well, we are both really struggling. I am finding it harder and harder to be around babies. Any stories about parents and children are hard. Its hard to feel like a parent. With work and travel, I feel like I am not getting to the hospital nearly enough. I feel powerless. and I am constantly feeling a little on edge. I am still trying to figure out what I am supposed to do, when really the fact is there is NOTHING for me to do. I hate it. Let's say I wouldn't wish this on someone I hate.

But other than that, things are great! I am not really sure what the therapist can do for us (I should really say me I think) but I am trying to ignore my suspicions about "therapy" and just be open minded. We will see how it goes.

The plus side, The best thing this week was holding Amirah, trying not to fall asleep while I am holding her (It happens EVERY SINGLE TIME, and I don't know why) and watching her watch me, and snuggle into my arm. Its amazing to watch her just track on everyone in the room. She looks towards whoever is talking, and she clearly can tell who is talking. She really listens to certain nurses, but the docs she kinda ignores :) The cutest and coolest thing was when I was holding her, she suddenly screwed her face up and let loose a cry strong enough the nurse heard her ten feet away. I just laughed, and rubbed her and talked to her for a second, and she stopped immediately. It felt really good to be able to get her to stop crying like that.

Okay, well that's all from me. Back to Jo

That's really all for now... we are just trying to be as patient as possible and some days are better than others.

As always, thanks for all your continued love, thoughts and prayers.

Oh yeah... for the first time today, one of the nurses told me that Amirah looks just like me :) It made me happy.

She looks just like her dad when she yawns...