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!.

15 Weeks Old!

Amirah had her first bottle today and did GREAT!!!

I can't believe how good the fast few days have been. She came off the vent last Friday. It's amazing how when you give up the power and just accept how things can change. I had fully accepted that she would come of the vent when she was ready and the next time I went to the NICU she was on the CPAP.

She was really cranky on Monday, so they decided to try her on the nasal cannula, and it helped some, but they suggested I bring in a bouncy seat. So I did....and she LOVES it. She likes to sit up and look around...she's a big girl, loves to be held and talked to.

Today they decided to try her first bottle feed. The nurse started feeding her (I got a few photos) and then she had me feed her for a little while. She ate 24ml (out of 45ml) with NO problem. She actually did so well they are going to try bottle feeding 1 time a shift, not just the 1 time a day.

We also found out she has a little bit of damage to her eyes from the oxygen. It really isn't that bad at this point, but the doctor will re-examine her in 3 weeks. We aren't getting to upset about this at this point. But will keep everyone updated.

That's the big stuff for now. As always, there are no words to express how grateful and blessed we are. Thank you from the bottom of our hearts for the continued prayers and love.

Here are a few photos of her from the last few days.

14 weeks 1 day

Today was a hard day for me... actually, this past week or so has been pretty emotionally draining. For the 3rd day in a row I got my hopes up about Amirah coming off the vent and yet again was disappointed. Andy lovingly reminding me that she really is doing good and I should "breath" and continue to be patient. I realized that I am running out of patience.

I think subconsciously (maybe more consciously than I would like to admit) every day past my due date that Amirah isn't home is harder.

Ok, onto the update on Amirah...she is still on the oscillating ventilator but her pressures and her oxygen levels are really close to what they want them to be so she can go back on CPAP. She started eating again on Tuesday and has had no troubles with that. She had lost 12oz while she wasn't being feed (down to 5lbs 2oz) but as of tonight she is back to 5lbs 13oz!

I haven't taken any new photo's of her recently, until yesterday she had a IV in her head because the veins in her arms weren't good anymore. But today they were able to put the IV back in her arm. I will take some photo's of her tomorrow.

12 weeks 6 days!

this is a photo of Amirah with no CPAP on and no feeding tube

Well, until today it was a pretty normal week. Slowly coming down on the pressures and the amount of oxygen she gets...slowly gaining weight (she's up to about 5 lbs now)...sleeping...pooping...spitting up. Typical baby stuff.

We did find out that they want her to be on a PEEP (not sure what it stands for, but it is how they measure the pressure they are pushing the oxygen into her) to be a 4 before they switch her to the nasal cannula. She is currently on a 5 (she was at a 7 on Friday). Her nurse yesterday was trying to push her a little bit because she think she will be more comfortable off the CPAP.

On Sunday, the doctors told us they think she has an inguinal hernia. They were going to have surgery come look at her. On Monday Surgery came to look at her and they wanted an ultra sound. Basically, they found that her right ovary and fallopian tube have prolapsed, this was caused by her hernia. Because of this they are going to perform a surgey on Friday morning. While they are in repairing the right side they will take a look at the left side and possible do a precautionary repair too. This a very common surgey. The biggest risk for Amirah is that she is going to have to be put on the vent for the surgery.

That being said, we are going to ask for some extra prayers today, and at the time of surgery. Me and Andy are ok, our biggest concern is the vent. We (or really she) have worked hard at coming of the vent. We are just trying to remain postive and have faith.

We know how blessed we are and do remember that we have just hit a little bump in the road.

Here is a photo of Amirah and her daddy napping together today...

11 Weeks 1 Day!!

O my gosh! I can't believe we haven't posted in over a week... sorry to keep you in suspense, but the truth is not much has changed with Amirah's progress. She is still on the CPAP, she is still eating like a champ, and she is still growing bigger :)

One pretty new development is the awareness she shows when she's awake. Before she would open her eyes, look around but not really focus on anything. In the past few days she is really looking into our eyes. I have no words to describe the feeling of looking into her eyes.

She is also beginning to root around as she gets close to feeding time. Unfortunately we haven't been able to breast or bottle feed yet because of the CPAP, but its a terrific indication that she is rooting.

I spoke with her doctor yesterday and basically we are still in a waiting stage...waiting for her lungs to get stronger. She is doing great, but her lungs still need to develop more. He is confident this will and already is happening, and we just have to be patient. And his feeling is she will be going home in a month or so.

Needless to say we are totally excited to think about her coming home. And for me (I can't for speak for Andy) every day an eternity. I CAN NOT WAIT FOR HER TO BE HOME :)

Yesterday Nana held her for the first time. She responds incredibly well when being held. Her oxygen levels saturate really high. Hoping that her Aunt Jessica will be able to hold her tomorrow.


Thanks again for all the continued prayers...she still needs em :)

One last thing, thanks to my sisters for the lovely baby shower last weekend. It was extremely special.

Hope everyone has a great weekend!