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!.