9 Weeks 5 days

Big step - Yesterday she was moved to a new room. Her new room is for the bigger babies that don't need as much critical care. Its a great step towards coming home. The room is much nicer. More space, much quieter. There are only 3 other spaces in the room for babies. It was so exciting to be moved :)

She's doing good on the CPAP and every day is requiring less and less oxygen. I am really hoping she will come off the CPAP soon. She can't come home on the CPAP, she can't nipple feed on the CPAP. But if she can get on the nasal cannula then she can do both of those things.

I am starting to get really excited about her home coming. And trying to remain patient. But each day it becomes harder and harder. I find myself wanting to spend more and more time with her and its harder to leave her at the end of my visit.

As I sat holding her in my arms today, I thought of all the amazing mom's I know, especially my mother. I hope that I can be half the mother to Amirah that my mother is to me. I sat there looking at my daughters amazingly long fingers and dreamed of her future. When I experience those thoughts I can't help but think of my mother and her dreams for her children. I am overwhelmed with the love and power of life. And so thankful for everything I have.

I think I have begun my nesting and find myself increasingly annoyed with my lack of organizational skills and house keeping habits. I have boxes of cloths that I packed when we moved that I need to go through. Part of me is tempted to just take the whole box to Good Will without even going through it.

We have our baby shower coming on Sunday and I am sure once we have the baby stuff set up in her room we will be even more excited. My sister reminded me that even if I had carried full-term these last few weeks would be the same - eagerly awaiting the home coming of our little one. I always try to see the silver lining so, I thanked her for reminding me that we would be experiencing those feelings, but was thankful that I wouldn't have to be extremely uncomfortable in the process.


(I call this her Old Lady in Swim Cap & Nose Plug look lol)

9 Weeks Old!

I can't believe it's been 9 weeks already. Time really does go fast.

Since she has come of the vent last Friday its been quiet. Quiet is ok with us. She goes up and down on her oxygen needs. Her heart rate goes up and down. But as of today she hasn't needed to go back on the vent. She still could and we are prepared if that happens, but she doing good right now.

You might notice that in the recent pictures Amirah's eyes look a little puffy. This is a side effect of her lung disease. Basically she's retaining water. They may give her another round of laysics or they may give her another drug, but for now they are just in a wait and see mode.

One great thing since coming off the vent is that we get to hold her more and more. On Sunday and Monday Andy and I both got to hold her. Yesterday I got to hold her for about 3 hours! It's not only easier to hold her with the CPAP but we really get to look at her while holding her. I can't put words to the experience.

I am trying really hard not to get to excited about her coming home. It is still any where from 4-6 weeks or more from now. My sister did remind me that I would be feeling the same excitement even if we had gone to full term, except I would be really uncomfortable and excited. It made me feel better to remember that.

Over the weekend Andy and I went to finish our registry. It was an extremely over whelming experience and we both walked out of the store feeling completely unprepared. But after talking with my mom and my sisters we felt better and have begun gather things for her homecoming.

That's all for tonight. As always, we are so grateful for all the continuous love, support and prayers.

life: week 8 day 2: A BIG STEP!!!!!!!

WHOAAHHHHHHHHHHHHHHHHHHHHH!!!! AMIRAH NATION ARE YOU OUT THERE!?!?!?!!?? YEAAAAHHHHHH!!!! Thank you, thank you, thank you! WE are on cloud nine right now, and I really hope you are too! If you have not heard today, we reached a major milestone! In keeping the wrestling motif, Amirah just won the Royal Rumble,and is on her way to wrestle mania! The road ahead is still tough, and there is going to major battles ahead, but tonight, we can celebrate a little!

Amirah... Is off the respirator! She is now on CPAP. Basically, this device provides air pressure to help keep her lungs inflated, and provide some oxygen. to help her breathing. However, she is breathing on her own folks. She is currently at 80% oxygen, comfortably relaxing and still eating like a ravenous baby tiger. She is resting comfortably, and is looking more and more like a normal healthy baby. We can assure you, she is still fighting like crazy, but (to mix my sports metaphors) she is looking more and more like Rocky in the later rounds of the fight!

They are also giving her steroids, to help with the throat swelling and edema that comes from being incubated for so long.

Folks, today is a great day! Jo and I feel as if a giant weight was lifted from our shoulders today. In no small part, that weight was lifted because of your prays and good energy. I can not thank you enough for your energy, love and prays, and all I can ask, is please keep it up!

Coming soon A.N., I will have a special treat for you! I will be posting a montage of all the photos taken of Amirah. The pics start from when she is just over two hours of life, till now. I think you will be amazed at the changes and differences.

Amirah Nation, thank you for your prays, Enjoy some of the pics, and good night.

Life Week 8

Hello Amirah Nation! I want to apologize for another long spell between postings. It's been tough going folks, and Amirah has been really fighting. First, the good news.

Amirah is a Whooping 3 pounds (almost) 7 ounces. As you can see in the pics, she has come a long way from the days when she could wear my wedding ring like a high school teen wears a bangle! She is eating 18mls every two hours. She is off the continuous feeds, and eating more on a more normal schedule. She is pooping and peeing like crazy! She was more then happy to show mommy and daddy how good she was at pooping this past Sunday! I was left amazed and going holy smokes, where was she keeping all of that!

Amirah is still feisty. She managed to pull her incubation tube out twice in one week! I try to remind her every time that I am there that as much as she wants too, she cant get up and walk out just yet. She is a strong, and squirmy, and when she is awake, I can see her looking around. Its hard to not want to reach in and pick her up. The recently placed a shirt on her, as she has become better at regulating her body temperature.

Over all Amirah is really making progress, and it's amazing to watch. I know that progress is in no small thanks to you, Nation. Thank you so much.

Now, AN (I can call you AN can't I? You have been with us so far, It feels silly to be so formal!) Amirah needs you more then ever. Her lungs are still not growing as well as they should.

(continued by Johanna)

On Monday they started Amirah on Nitric Oxide treatments. This is to treat her Bronchopulmonary Dysplasia(BPD). Basically BPD is chronic lung disease that preemies often get from the breathing machines. The good news is that she can totally grow out of it. My niece Olivia (who was born at 25 1/2 weeks) also had BPD as a baby. Well anyway... back to Amirah. They started her on the NO2 treatments on Monday. They were hoping it would help her with her oxygen absorption. It hasn't seem to help and if there are no significant changes they will stop it tomorrow.

So, since the NO2 hasn't seemed to help, in a few days they will probably start her on another course of steroids. We REALLY REALLY want one of these two approaches helps her lungs. So please, everyone just "see" the NO2 or the steroids helping her lungs get clear of the gunk that is in them now.

Some other good news- I was able to hold Amirah yesterday AND today! She had a great nurse that really encouraged me to hold. Yesterday I held her for over an hour. It was amazing.

Amirah is become more and more active and engaged when awake. It's amazing to watch. Sometimes it's really frustrating though. Last Friday, right before she pulled her tube out for the second time that week, she was really frustrated and was crying. It broke my heart to not be able to scoop her up and try to comfort her. I can't wait til I am able to do that for her.

One other update from what Andy said above... she is getting feed 30ml every 3 hours.

That's all for now folks... Thanks again for all the prayers and thoughts.

3lbs 1oz!

As of last night Amirah weighs 3lbs 1oz! It's amazing to see her grow. She gained 3 ounces in one day :)

We are still going through the same things... she eats well, is pooping(most of the time without any help), and growing. She is still on the ventilator and is being giving a course of antibiotics. They have tested her for infections but the results weren't back yet but they started the antibiotics as a precaution. Basically we are still just waiting for her lungs to get strong.

We still haven't gotten to hold her since that first time. I am really hoping we will be able to soon.

Thank you all for the continued prays.

Sorry for the short post...it's been a long week.

Week 6 day 4

We had a nice little visit with Amirah this morning. They changed her feedings from continuous feeding to feeding every two hours. It's a positive step forward. She was still de-sating some but was recovering on her own, needing less intervention from the nurses. She did have a slightly elevated temperature while we were there, but they nurses and doctor didn't seem to be worried about it. I left today with a much more calm feeling than yesterday.

I just called to check in on her (which we do several times a day) and found out that both her heart rate and her temperature have been elevated for the past few hours and the doctors weren't able to lower it yet. They gave her a sedative around 5:30 to see if getting her to relax some would lower them. They did try non medical intervention such as ice before switching to medication. They took blood to check for infection, which she doesn't have, and to check for the different levels in her blood, which they didn't have the results for when we called around 6:00.

I am feeling anxious and worried for our little girl. But Andy and my sister Jessica remind me to think positive and have faith. Which I do. But I am still wanting there to be a better answer. I know this is a long road we are on and I have to remember (which Andy did remind me of) that she will have these ups and downs. But I have to be honest, it's incredible hard to be here at home and not having Amirah with us. It's hard to be at the hospital and see her fuss and cry silently (no sound comes out because of the ventilator) and not be able to pick her up and comfort her. It's hard not to count the days and wonder when she will be able to come home.

Maybe it's because we around the half-way-ish point that things are seemingly harder emotional recently. But I am eagerly awaiting the day Amirah gets to come home with us.

Thanks for listening (reading) me vent. I feel better after sharing my thoughts.

Life Week 6 , Day 3

Hello! Hello! Hello Amirah Nation!!! After a brief hiatus, I am glad to bring you the latest news about our little fighter! As you are no doubt aware, Amirah has been gaining weight at an extraordinaire rate. She is now 2 pounds, just under 13 ounces. She is starting to really eat like crazy, and her feeds are now 8mls an hour. She is really starting to fill out, and she is really starting to look the way she is supposed to look. She has been gaining weight steadily despite regular poops, and her intestines seem to be doing exactly what they need to be doing. Amirah however, is still having problems.

Amirah is still having a hard time breathing. As much as she is gaining weight, and her systems are functioning, she is still struggling to breath. Early in the week, Amirah was given a red blood cell transfusion, and another round of Lasick was given as well. As you can see in the pictures, she is still on the respirator, and the doctors and nurses continue to monitor her oxygen levels. The talk about her oxygen levels in terms of saturation levels (just skip ahead if I've explained this before), and Amirah needs to be between 85% and 95%. Sadly, for Jo and I, we have learned to live with her constantly dropping under those levels. Most of the time, she manages to come back on her own. Sometimes, the nurse have to help her. Its been frustrating, and quite a bit scary. Its still difficult to watch her drop as low as 60 or 50%, unable to do anything.

The doctor spoke with us briefly today. Amirah essentially has lung disease, primarily from just being so small and immature. This is something that Amirah just has to fight, and out grow. He reassured us that while the de-sats (that is the term the doctors and nurses use to describe when her oxygen levels plummet) are serious and worrisome, the are also completely expected. The doctor explained to us that as she gets older, and bigger, she should began to have less and less episodes. Essentially, what they are dong now is helping Amirah keep her lungs clear of fluid, and make it as easy as possible for her to breath, so her lungs can develop.

Amirah is still fighting like hell, but she is in a difficult stretch right now. The most wonderful feeling in the world was when I finally got to hold my daughter. Its been very difficult not getting to hold her again. We where told by a nurse that it might be best if we don't even touch her, as any disturbance or touch seems to make her de-sat more often then not. The only thing we can do is watch, and wait, and give her our love.

Amirah Nation, Jo and I have received so many messages of love and good will from so many of you, and I want to let each and every one of you know that with out a doubt, it is felt! As scary as things are, Jo and I realize that we are so lucky. With all of Amirah's problems, she is still doing very well. We can feel your love and prays, and all we can say is thank you! Please keep it up for my little girl!

I really want to end on a high note, so I will tell you a brief story. As we left for the hospital this afternoon, we stopped for the mail. I grabbed the mail, and in it was two things. The first, to our relief, was Amirah's insurance card (THANK GOD I work for a company that provides good insurance coverage!). The second item was a bill from the hospital. Essentially, it was a bill for the first three weeks of Amirah's life. That bill, was 67,000 dollars. When I opened the bill, and told Jo, well, I am not sure about Jo, but a VERY cold chill went down my spine. Was that bill the deductible? I though my insurance covered this. I had a brief glimpse of going bankrupt before even to bring Amirah home. Thankfully, rationale thought re asserted itself, and I remembered there was a documentation problem earlier in the week. The first 3 weeks of Amirah's life had in fact cost 67 thousand dollars, or an average of 3,190.50 cents per day! Fortunately, the insurance does cover this, but man, was that a scare!

I feel blessed every day for the things I have in my life, and how crazy things could really be. Thank you Amirah Nation, for staying with us, for providing so much love and energy, and for providing so much support! A big hug and kiss for my two sister in laws, and my mother in law, who in those first few weeks did all the little things so I could focus on my wife and daughter! Another thank you to my best friend for just providing a few words of advice and a hour or two of sanity every few weeks! To the rest of you, thank you for the emails, letters, and little notes. Thank you so much, and I will try to provide a few more regular updates.

Until then, Amirah Nation, keep up the energy, keep up the prayers and keep sending those thoughts of love to our little fighter.

Andy