19 weeks 2 days

I had a good visit with Amirah today. I really needed it too. Last night I was an emotional wreck. I was feeling sorry for myself...feeling sorry for Andy....feeling sorry for Amirah... generally just feeling sorry. I cried A LOT. I was feeling angry and then I would feel guilty for feeling angry and then I would feel sad and then I would feel angry...It was a horrible spiral of bad emotions.

But, today was a new day. I try to wake each day and be grateful for all that we have. I went to visit Amirah right after work. She was up and content. I held her for about 1 1/2 hours. She dozed in my arms. I watched as brief smiles would flicker across her face as she lay in my arms and I was happy.


While I still feel like I am on the edge emotionally, I do feel more calm today. Amirah had the best blood gas she has ever had last night. Her doctor told me today that he thinks her lungs have really started to "open up". This means that it's working... the trach, the medication, the time its taken.

We still have an unknown amount of time in the hospital (she will be moving from the NICU to a children's hospital for rehabilitation in about 2 weeks). We have no idea how long it will be until she get's to come home, but I am going to be speaking with some other parents that have babies that were trached next week. I am hoping to get a sense of what our lives might look like while she is getting weaned off the oxygen machines and learns to eat from a bottle.

That's really all for now...it seems like things are moving slowing but I am relieved that they are moving in the direction of coming home.

Thank you for the continued prayers, love and thoughts. I don't think that we can ever express how much it means to us.

18 weeks 5 days Old

Sooooo....it's been a crazy few days....as most of you know Amirah had her tracheotomy surgery on Thursday. The surgery went very well. She came out of surgery and her color look so much better than it had in a while. She woke up, slightly out of it, about 20 minutes after returning from the operation room. We were so relieved that she seemed so calm and comfortable.

Most of that first day she just slept. It was a really long day for me, Andy and my Mom (who had been with us since Monday) and for all the people that were sending Amirah and us there thoughts and prayers.

Friday was a good day for Amirah and for me and Andy. My mom went home, we can't thank her enough for all her support through all of this, me and Andy went to the movies, visited with Amirah and generally just tried to relax.

Saturday was busy...shopping, visiting with Amirah, cleaned the house, and then spent the evening with my sister Jessica and her family who came for a sleep over.

Then Sunday arrived. I went with my sister Jessica for an early morning visit with Amirah. I got to hold her for the first time since her operation. It was a little scary at first, but after a few minutes it was "normal". After about a half hour (most of which she was awake for) Amirah started getting a little agitated and had some sort of lung spasm. It was a little scary because the nurse had to use the breathing bag to help her for about a minute. I should mention that last week when she had a follow up echo-cardiogram they found that Amirah has a little bit of Pulmonary Hypertension (because of some constriction of the blood vessels in her lungs). This is pretty typical for someone that has Chronic Lung Disease (CLD) like Amirah, and she should out grow as she out grows the CLD.

It was pretty scary when she had the spasm. But after a minute or so she recovered and settled down and fell back asleep.

I don't know if it started with the spasm episode or if it would have happened yesterday anyway, but yesterday the reality of our situation hit me...it hit Andy too. We have a long road ahead of us. Even if she does come home soon we are looking at having a baby home that needs a lot of extra attention, lots of doctors appointments, lots of training... lots of stuff we weren't really expecting to have to deal with when we were dreaming about our new family.

I feel bad complaining and want everyone to know how truly blessed and grateful we are for ALL that we have. I could go on and on with all the things that we are blessed with, and I know in two or three years we will look back at this experience and almost forget how it felt. But right now its hard.

In addition to the fact that she will have the trach and all that it brings with it, Andy and I are also dealing with the reality that we really really expected she would be home by now. So while in February and March it was hard, we would just say to each other "it's only another month or two and she will be home". Now its the end of May and we have NO idea how long we will have to wait to Amirah comes home. We try to take this day by day, but its pretty hard to live like this. I am looking into different support groups and/or therapy to address some of our feelings. We both feel like we would benefit from some support like that.

Andy:

Hey Amirah Nation! I wanted to jump in here for a second, and maybe just talk a bit about the experience. This is all about Amirah, but I want to be honest. Deep down, I was really hoping that this blog would be a few months of close calls, and then, Amirah would be coming home, and it would be pictures of her growing up. I know, movie like, and a childish dream. But one I held never the less.

Yesterday, I think more then anything, Jo and I mourned all the things that we will not get. Jo will not get to breastfeed. I won't get to play all those little rough and tumble games a father plays with their child. We are mourning the loss of not getting to be normal parents to a normal baby. We feel selfish for feeling like this, but its how we feel. When Jo talks of living day to day, she is totally correct. It's hard to plan for anything when you don't know how your child will be doing two months from now.

I think as we continue to discuss Amirah's fight, it would be wrong of us NOT to discuss, at least in some part how we, as her parents, are handling this. Jo is right. This is the toughest thing I have ever been through. Today, as I was feeling particularly sad for myself, it suddenly occurred to me, I am being sad for something Amirah does not realize she is missing. She is taken everyday, a day at a time. There is literally no other way for her to conceive the world right now.

I decided then; as hard as it is to keep reminding myself, if she can take it a day at a time, well, I'll just figure out a way to do the same. It's literally the hardest thing I have to do.

Okay, back to Jo. :)

Anyway...enough about us... here's more about Amirah....
Today they started her on some Nitric Oxide again. This and another medication (I can't remember the name) that she started yesterday will help with her Pulmonary Hypertension. I spoke with her doctor today and he said it would probably be a few weeks before we see a significant difference from the NO2 and the medication. The will repeat the echo cardiogram to see how shes doing then.

She had a follow up eye exam last Friday and her ROP is about the same and the eye doctor was not to worried. He believes she will out grow it without the need for surgery... (we like the good news lol)

She also had a head ultra sound before her surgery, more as a check up than anything, and that was completely normal.

The Physical Therapist that work with her have really discovered that Amirah LOVES to move around and when they can the "dance" her around in crib...

She really is a great baby. It's hard to leave her most days, but I know that she is in the best place for her right now. And I know that the nurses that provide most of her day to day care truly care for her and that really helps.

As always, thank you for all the continued support, love and prayers. The amount of love, prayers and thoughts from everyone over the past few days has been over whelming. We can't express how truly blessed and loved we feel.

Finally, here is a photo of Amirah today with her "puppy" propped up to hold her pacifier. We still need a name for her puppy and are taking suggestion :)

17 Weeks 6 days

Just a quick update on Amirah....

I met with the E.N.T surgeon this afternoon. Basically she will take Amirah to the operating room (probably next Tuesday) and look down into her trachea to check that there isn't anything else that might be causing her breathing challenges. There is a possibility that there is irritated tissue that can be removed instead of the tracheotomy. But if there is nothing there she thinks she can do she will then preform the tracheotomy.

In either case, we won't know the outcome until after the surgery. They moved it back to next week mainly because Amirah is on a 5 day course of inhalant antibiotics for small bacteria that is present in her lung secretions. The antibiotics are already helping her feel more like her self.

It's hard for me to know what to do with myself for the next week. Part of me would like them to just get the surgery done already so we can move on to the next step. I also feel torn about what to "wish" for... as most people know about me, I am a positive thinker, so there is a HUGE part of me that is wanting to just think about it being just some irritated tissue that could be removed instead of the need for a trach. I guess I just need to think about the end results of her being able to breath easier what ever it takes to get her there.

I guess that's all for now. As always, thank you for all the love, prayers and support that EVERYONE (even people we don't know) is sending our way. We truly are blessed.

Love is Always
Johanna

17 weeks 5 days

Hellooooooooooooo Amirah Nation. It... Has..been.... A TOUGH week!!! Our Little fighter Amirah has had a tough week, and she really could use your love, energy and prayers right now. Amirah is going through a difficult time right now, and she is really going to need all the love and energy she can get over the next few weeks. I want to thank all of you once again for your love, prayer and energy. Thank you thank you thank you.

First, lets talk about her condition. As you are aware, Amirah had to go back on the CI-Pap. This past Friday (05/14/2010), Amirah's blood gas test (its the test they use to confirm the percentage of oxygen, CO2 and other elements in her blood) started to come back with extremely high levels of CO2. They tried to increase the pressure and level of oxygen, but unfortunately by Sunday afternoon, the doctors where forced to incubate Amirah once again. It has been extremely difficult for us to see her go back on the vent, especially since three weeks ago we felt we where making final preparations for her to come home. Its even harder to see her lying there once again unable to even freely move her head.

The doctors took another look at her today, and they have come to some difficult conclusions. The doctors feel that Amirah is going to need long term respiratory help, and there is really only two choices at this point. She can either continue along for how ever long it takes on the ventilator, until her lungs get strong enough for her to breath on her own. This is impractical, because she wont be able to bottle feed, or cry, or do much more then lay there. Given that with the condition of her lung disease, that can be up to two years! The other option, which has been even harder to contemplate, is the doctors perform a tracheotomy.



A tracheotomy, for those unfamiliar with the term, is a surgical procedure in which they will put Amirah under general anesthesia, and then make a small, vertical incision in her trachea (the tube that connects her lungs to her nose and mouth). This incision is called a stoma. They would then place a small tube in the stoma, bypassing her nose and mouth. I know your wondering why they would do this. Essentially, the area from your larynx to you mouth and nose is considered a breathing "dead zone". It takes energy to take in and push out air pass that zone. Amirah's lungs are just not big or strong enough to push and pull that air, even with help from the CI-Pap. As you will also recall, Amirah's larynx is damaged from being on the vent so early and so long. Her damaged larynx is also partially blocking her airway, and making it difficult for her to breath evenly and strongly. So the doctors feel if Amirah can just pull and push in air without her damaged larynx and that dead zone in the way, she will be able to breath much easier. A ENT (Ear Nose and throat) Specialist took a look and concurred with the doctors.

The doctors told us today that we have a choice. We can continue with Amirah being incubated for however long is necessary (which can be possible up to two years) or we can allow the doctors to perform the tracheotomy and Amirah can be possible be breathing on her own within a matter of weeks or months. As you can imagine, its a difficult choice that seems to have no choice at all.

We have decided to allow the doctors to perform the tracheotomy. They told us they can perform it Friday, but possible later if needed. I am under the personal impression that the would like to perform the procedure as soon as possible. Jo doesn't think so, but it really doesn't matter. Observing Amirah on the ventilator, it is clear that she is actually the most comfortable she has been in weeks. She can clearly breath, and that alone seems to calm her. She was laying there looking around, and for the first time in a long time, papa and daughter just took some time to just look at each other. It looked like in her eyes she just wanted to be out of there, and it just broke my heart.

On the plus side, as scary as this whole procedure is, it is only temporary. They can easily close her stoma once she is big enough and strong enough to breath normally. The pictures Jo found of children with similar procedures almost all show smiling children with these white collars around there neck, with a little hole in the center of the collar. It kinda looks like some weird child accessory, and not a major breathing device. Not really all that shocking, and from all the posts we read from other parents, it really seems like the way to go. The scariest thing for us (well at least for me!) is learning all the special care she will require. Jo and I continue to try our best to remain positive and to not completely freak out. It's very difficult to not only not have her home, but for her to require another operation, and one with so much more of a long term impact. We are very worried, because once the tracheotomy is performed, there is a slight chance that she will come home on a ventilator. We have been assured that she most likely won't be coming home on the ventilator, but she will more likely come home on oxygen, but still its worrisome. We realize this is outside of the realm of normal child care, and its even harder looking at all the documentation we are getting on how to care for a special needs child. I am trying not to think of Amirah as special needs or disabled, but instead as facing unique challenges that she will out grow, in a few years time. The nurse practitioner today told us that by the time Amirah is ready to start school, the tracheotomy will have been long gone. Considering how lucky we are given the few problems Amirah has had for one born so early and small, its a bright spot that keeps us going.

I joked today that with all the stress and worry, when Amirah is 16, if she gives us even the hint of a problem, we will send her off to live with one of her Aunts, as she has given us enough stress and worry in the first four months of life then most kids do in 20 years! It was a good laugh in otherwise a day that was bleak and stressful.

I will keep everyone updated as to Amirah's condition throughout the week. As of now, she is resting comfortable, and while she is on the ventilator, the setting are very low. She seems to be more comfortable, and not as cranky. Hopefully, that continues.

I close as I always do; Please, please, please, if you can spare a moment of prayer, or to send Amirah some good energy, or loving thoughts, our what ever you feel might help her to heal, Jo and I would be extremely grateful. Throughout this, the two things that have kept us going has been knowing the loving, world wide family of people pulling for and cheering her on, and the knowledge that even through all of this, we have been extremely blessed.

Thank you once again.


Yours truly,

Andy

16 weeks, 6 days

HELLOOOOOOOOOOOOOOOOOO Amirah Nation!!!!!! I see in my absence we have picked up a few more fans, and I want to say welcome! As always, thank you to those who have been sending love, energy and prayers for my little girl! I see that the people in her corner is just growing and growing, and with all of that positive energy, I know Amirah will be home in no time!

If anyone has been wondering how come I have not been updating this blog as regularly as my wife, Ill explain. There are two reasons; the first is, I have been extremely busy with work (nearing the end of my project) and between work and the hospital, I barely have energy at the end of the day to sit just sit there. The second reason (and a little more truthful then the first) is that I have also been a bit lazy! I can promise you this folks; That is going to change!

Lets go with Amirah's current condition. For those that have NOT been following our face book posts (and if you haven't how could you not!!! Kidding!!!) Amirah has had a few set backs. About three weeks ago, a specialist took a look at Amirah's throat. Her cries and squeals are so rough and horse, she sounds like she is a two pack-a-day smoker! She also seemed to be struggling at times with her breathing. Well, the doc took a look, and discovered a problem with her larynx. As you know, almost from the day Amirah was born, she has been on assisted breathing, with a tube down her throat. Well, when we are born, the bones are still soft, and a bit malleable. Since she essentially had a tube down her throat for so long, the bones in her larynx could not settle and set properly. This in turn has caused some problems with her breathing. She also seems to have a bit of trouble keeping her food down, and the spit up was irritating the problem. Unfortunately, there is not much the doctors can do about it, besides giveing her meds to help with stomach irritation. Amirah will have to grow out of it. The problem with this, is that Amirah was expending a ton of energy to breath. This in turn was keeping her from putting on weight.

The doctors discussed it (apparently there where two camps. One that felt her spitting up was not normal, and another that thought it was) and at first took her off of bottle feeding. They then decided that since there wasn't much they can do to prevent her from spitting up, she should go back on bottle feeds. That's when the real problems hit.

The medical team normally takes a blood sample once a day to determine if Amirah's oxygen levels are high enough. Her results kept coming back very low, so they placed her back on the cpap. After doing that, they placed her on the ci-pap (the one that basically keeps her lungs pressurized). Becasue of this, she can no longer bottle feed, and she is back to receiving all feeds through her feeding tube. Amirah absolutely hates the feeding tube. The last time they didn't tape it in place, she managed to work it out of her in less then 12 minutes!!! She is also clearly not a fan of the mask either. So we are kinda back to where we where in march. Amirah is going to need a lot more help breathing, and she is going to need to keep growing, before she can come home. Thankfully, she has started to really put on weight again (she is now 6 pounds 2 ounces). She still does not like being messed with, and it seems she mainly likes to sleep and listen to her music (she LOVES the music cd the hospital provide. It's all classical versions of nursery rhymes and songs). Whenever the nurses go into her crib to do her cares, she completely FLIPS OUT! And god help you if you don't IMMEDIATELY change her diaper, or feed her exactly on time. Yes, Amirah is a little diva (has been since she came out lol) but she is so cute no one minds. We are still waiting for eye specialist to come back and take a look at her eyes. I am personally worried, as the amount of oxygen she has been on has already caused slight damage to her eyes. I am worried they will get worse since she is on the ci-pap.

As you can imagine, the last few weeks have been VERY difficult for mom and dad. A month ago, we where VERY excited, believing we had turned a corner, and that Amirah would be home by May. That is clearly not going to happen now. What's even harder, is that it feels like a major setback. The doctors warned us that there will be setbacks, but its still very difficult. The nurses and doctors have been wonderful, and they even acknowledge that it is a difficult set back.

It's been especially tough on Jo, as she has been pumping milk for Amirah since she has been born, but without Amirah breastfeeding, its tough for her to generate large quantise of milk for her. Not to mention, its really tough on the body. This setback is really hard, because Jo has been looking forward to breastfeeding for quite some time. Jo is an absolute champion, and has never given up pumping for Amirah. She has really been just wonderful with all of this. I sometimes wonder how she keeps as much of her composure as she does. Her toughness is absolutely amazing to me, and its why I love her so much.

This has not exactly been a cake walk for me either. As some of you are aware, I am working on a large scale construction project in NYC. We are nearing the end of the project, and as can be expected, time is short, tempers shorter, and the problems long and difficult. Because of this, for the last month or so, I have been unable to get to the hospital as much as I would like. I consider it a good week if I can get there three times out of five. It's especially difficult, as I find myself wanting to hold Amirah as much for her own good as mine. It's also tough, because the plan was for me to take vacation time when Amirah came home. I know, I know, all of you are laughing saying that won't be much of a vacation with essentially a newborn in the house! However, at this point, Jo and I would gladly welcome the cries of Amirah. Rodrigo (our cat) cries like a baby in the morning, and as much as Jo and I love the silly thing, his cries are no comfort. We really want her home. With us unable to plan when that will be, and work, there is a chance I will be unable to take that vacation time when she comes home.

It's also in my nature to find a solution to a problem, and with Amirah, there are very few solutions beyond letting Amirah's body do what it needs to do to heal. You have to keep in mind that the vast majority of what the doctors and nurses have been doing is keeping her comfortable, and reducing the work her own systems have to do so she can grow as quickly as possible. I can recall few times in my life when I have felt less powerless.

Jo and I realized that simply going to work, the hospital and occasional seeing family or friends is not good for us, so we recently started a exercise program! Big thank you to Ben for turning us both on to Cross Fit!

So Amirah Nation, you are now caught up to speed on the Goodale - Priester clan. Amirah still needs your help! She is a fighter with all the attitude of a WWE superstar, but she is still stuggling. On a side note, I find myself, when I can watch wrestling, liking more and more the characters that talk about how great they are and how bad they are. The Miz and Chris Jerico especially. The two of them consistently win, have held or holds championships, and basically, they walk thier talk! If you walk your talk, then it's not boasting, it's simply stating a fact! Amirah is a fighter, and since Jo and I are doing the talking, she has consistently been walking! Well... you know what I mean!

Amirah Nation, the ball is back in your court! Amirah still needs all the prayers, and good positive energy she can get. Amirah still needs YOU! From the moment I have come to you asking you to pray for my daughter, ever single time you have, she has improved. I almost feel guilty to keep coming back to you to ask for even a moment of your time, but I have no other options.

So please, if you can spare a moment or two, and say a small prayer for my daughter, or send her some good will, Jo and I will be so grateful . If you can perhaps ask your church congregation, group, or friends to do the same, we would be so grateful . Amirah needs every bit of good energy and positive vibe she can get!

I will try to do better about updating this blog as things develop. Thank you all so much for taking the time to follow this blog, for your prayers and energy, and for the well wishes!

Until next time Amirah Nation!

Andy

Update 05/13/2010: A little humor to make you smile! Last night, when we called the hospital to check on Amirah, her nurse stepped out, so the other nurse went to look at her chart and give us a breakdown of what was going on. Well, as she was giving us the rundown (no changes by the way) she suddenly blurts out "Oh my god she is sooooo cute! All the other nurses keep wandering in to look at her, and they are all saying 'She is so cute! If you need someone to hold her, just give me a call'! " You KNOW you have a cute kid when the nurses are fighting to just hold her lol!.