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

Week 5

Again I'm sorry its been almost a week since the last update. Amirah is doing well. She weighs about 2lbs. 6oz. She's eating well, pooping well and general do great. She is still on the ventilator, and similar to the her past behavior on the past ventilator, she has good days and not so good days. Basically this week has been a quiet week as it relates to her development.

Last Wednesday I was able to hold her for the first time. I'll be honest, I was really nervous to hold such a little bitty baby. But other than the ventilator tubes being taped to my shirt, once she was on my chest she just felt like a baby...well she felt extra special to me, but her body felt like any other baby I've held before.

She happened to be really awake when they put her on my chest. For about 10 minutes she was awake and looking around, calm and warm on me :). I don't know if I can put words to the emotions I was feeling. But needless to say it was probably one of the most special moments in my life. She fell fast asleep after 10 minutes or so and then just slept on me for another 20 minutes.

Since then she's been de-sating a little bit so neither Andy nor I have been able to hold again yet. But we both no that we will get to again soon.

Like I said it's been a pretty quiet week. We are ok with quiet. She's getting bigger and getting healthier and before we know it she will be home :). We are continuing to try to stay in the moment and not get to anxious. We feel so very blessed for all our family and friends and all the love we have surrounding us. Thank you all so much.

Andy hold's Amirah!

Yesterday Andy was able to hold Amirah for the first time. Because she is on the ventilator still only one of us is able to hold her a day. It takes about 15-20 minutes to set up the ventilator on the person that is holding her. I will get to hold her today :. I'm sure Andy will write about how he was feeling at some point.

The type of hold we will do with her right now is called "Kangaroo-ing". Basically this is just close holding, and having skin to skin contact between the parent and the baby.

The nurse and a respiratory doctor are at the incubator to help transfer the baby and all her tubes to the waiting chest of the parent. The place the baby on the chest and into the hands. Then cover the baby with a blanket. And the whole time they are making sure the vent tubes are staying in place and that Amirah is still sat-ing at a good level. The tape the breathing tubes to the Andy and then once she is settled they let us sit there with her.

I can't speak for Andy, but for me it was almost overwhelming to see him sitting there holding our daughter. It seemed harder to leave her yesterday and I think it was because it some how became more real that she is baby... not just this little person we go to visit.

I don't know if I mentioned this before but the nurses are beginning to encourage us to interact more with Amirah. Soon we will begin to change diapers, and hopefully in a few weeks we can start to feed her, either with a bottle or breastfeed. Right now she isn't able to be feed that way because before 34 weeks babies don't have the suckle/swallow/breath ability.

As for Amirah, she is doing pretty good. Her lungs are still really wet. They have decided to give her a 3 day treatment of Laysics and they started that yesterday. They also stopped giving her the Abuteral and started her on Xoponex. The Abuteral has a side effect of speeding up her heart rate and the Xoponex doesn't do that. So over the next few day's we really hope to see her lungs doing much better.

She is still eating well and growing bigger. Last night she weighed 1000 grams! And she is really starting to fill out more. Her hair is growing and her eyelashes have started to come in. It's just amazing to observe this whole process. We feel extremely blessed for all the love, support and prayer our family gets. Please keep them coming... and especially pray that Amirahs lungs really start to get strong and clear so she can come of the Ventilator soon. Thank you thank you thank you!

4 weeks 4 days old

Sorry for the delay in updating. I keep wanting Andy to do the updates...I love how he writes, but he has been really really busy at work and I don't want to add yet another thing for him to do, he already does soooo much. That being said I will update as best as I can...

We went to visit with Amirah yesterday for the first time since Tuesday. Wednesday we were snowed in and then on Thursday and Friday I was afraid I was getting a cold and didn't want to risk getting her sick. It turns out its my allergies, so we went to see her for a nice long visit yesterday.

The biggest event that happened with Amirah this week is that she was changed from the "Jet" ventilator to a "regular" ventilator. Overall this is a positive step. The "jet" ventilator is very delicate and easy on her lungs, but at the same time does a lot of the work of breathing for her. The new vent she is on does less breathing for her and forces her to work harder. They watch her carefully to make sure she is not getting to tired. Another good thing about the new vent is that we are able to hold her on this one. We haven't held her yet, but we are hoping to get the opportunity to do that today.

Yesterday, while we sitting with her, she had a little episode that was pretty scary for me and Andy, but very typical for her and all preemie babies. She had a de-sating episode. I guess I should explain what this is. They monitor very closely what her saturation of oxygen in her blood is. They want it to be in the mid 90% range. Amirah has a history of going up and down pretty drastically with her saturation level. The amazing nurses are so use to dealing with it. But to be honest it scares me half to death.

So anyway, Andy and I were sitting there just enjoying the quiet of NICU when all of a sudden she started de-sating fast... she dropped form 94% oxygen to 67% to the low 50's. The nurse came right over as it started to de-sat to the 60's range and then as it went lower, the started to use a bag (like what they use for cpr) to help her breath and they started to stimulate her too,trying to get her to wake up. It was really scary for me and I had to walk out of the room...its how I handle this things... I can't really be there. Luckily Andy is much stronger than I am and is able to stay, even though he to is extremely scared. He amazes me with his strength. And I just wanted to say that.

I should add that even though we find these little episodes so scary, they really are typical and the nurses know exactly what to do to deal with them.

After she recovered from that little episode they called in the doctor to listen to her lungs a little bit. He said they did sound a little wet, but mostly he thought they sounded more tight. He gave her another does of laysics to help with the excess water.

They are also giving her does of Albuterol to open up her lungs. This medicine really seems to help her, but after a few hours it seems to wear off. They were talking about upping the amount they are giving her.

She is eating (through a tube still) really well, and she is gaining weight. She had been eating formula, but as of yesterday she started on breast milk. I had to come of some medication before being able to give her my breast milk. Hopefully my blood pressure will continue to cooperate and I will be able to keep up the breast milk. As of last night she was 990 grams (just about 2lbs 3 oz) :). She is clearly getting older and really looked at us yesterday. I am really excited and a little bit nervous to hold her for the first time.

I really will try and update more. Thanks for all the continued prayers and support. Keep 'em coming...We would love to see her come of the vent soon and for her lungs to clear up and become stronger and stronger.

Pictures from 2/13/10

Ventilator

Amirah has been removed from the jet ventilator and put on a regular ventilator. This is very very good news, and it means the steriod shots she was given are helping :). It also means we are one step closer to being able to hold our little girl.

Life: Week 3, Day 4

Hello Amirah Nation!!!!!!!!!! Thank you, thank you, thank you for joining us just a few hours before "The BIG Game". As we get ready to enjoy SuperBowl Sunday, please remember that Amirah is in the biggest game of her life, for the biggest prize there is! So thank you for your prays and energy! Please, please, keep the prays, love and energy coming! Lets get to it, as I am sure you are all anxious for news!

The docs have not been satisfied with the progress Amirah's lungs have made, so yesterday, they began a three day course of steroids to help with their development, and get her off the ventilator. I'm going to tell you, Amirah Nation, what I told the doctors and nurses; It's okay! It's a little late for Amirah to qualify for the Olympics this year :)!

Other then Amirah's lungs, she is pretty stable. It appears she is pooping every other day or so now, and she is currently eating a hearty 5.5 ml of formula a day! In a few days, we are hoping to switch Amirah back to the all natural stuff, so we will keep you updated. Amirah is fluctuating on her oxygen, dropping as low 35% at one point. Hopefully, the steroid treatment will help to get her to the point where the ventilator will not be needed.

Amirah's weight is still going up and down, but we are hoping to get past the two pound mark. Amirah continues to fill out, and she is resting comfortable. Well as comfortable as they can make it, since Amirah still likes to fight, wiggle, and generally won't stay in the place and position she is placed in! They still have to wrap a blanket around her to keep her in place.

So that generally is where we are at. Amirah is still fighting, and she is making process, but she still needs you! She still has a long way to go. So please, please, continue sending your prays and love for my little cupcake!

Thank you Amirah Nation, for your love, your prays, and that wonderful energy you are sending. Thank you so much!

Until next time,

Andy

3 weeks 1 day

This is from Johanna again since Andy is once again cooking dinner :)

Since the last update Amirah has been going up and down with her oxygen settings. Basically, she is doing what they call de-satting. Her oxygen saturation of her blood will drop really low, and the nurses than have to come and do something thing to help her. Here is what they may do, they may do just one of them or all of them depending on how Amirah reacts.
1. they just jiggle her a little to get her to to react
2. they up the percentage of oxygen they are giving her
3. they up the pressure in which the vent in putting the oxygen into her lungs.

Sometimes they don't have to do anything, and Amirah recovers on her own.

Last night they did an x-ray to check the position of the ventilation tube and it was a little out of alignment so the inserted a new tube. They also noticed that her lung looked like there was a look of gunk in them, so they upped the pressure which helps push the mucus out. They also gave her a red blood cell transfusion because her hemocrit was low again. And the suctioned out her lungs a few times. All those things helped clear her lungs up and when they did the follow up x-ray this afternoon her lungs looked much much clearer.

Every day her growth is apparent to us. She is really starting to fill in and is growing longer. On Monday she weighed 1lb 15oz. But over the following two days lost about 30 grams. I don't know her weight for tonight yet, but the up and down of the weight is also normal.

Thank you again for all the love, support and prayers. Please keep praying, it works :)