Friday, October 31, 2008

Trick or Treat!

I'm sitting here, waiting for little trick or treaters to make their way up my sidewalk and knock on my door.  Where are they?  It's been 30 minutes since trick or treat started, and not one child yet.  Porch light is on  (that was last years mistake.  "why are they skipping our house?"), candy is in bowl, I weedwacked the weeds in the yard so we wouldn't be "those" neighbors,  my house looks clean if you just stand at the front door.  Everything is ready, and not one kid yet.  I seriously look forward to trick or treat night every year since I have been an adult.  I love passing out candy.  Really.  Well, I'm sure they'll get here at some point.  

We decided what we're doing about vaccines... for now.  We are going to wait until Ezekiel is two months according to his adjusted age (ie two months after his due date) to possibly start some of the vaccines on an alternate schedule.  We know we don't want hepatitis B, Polio, and DTaP.  We're still researching the rest.  I've added more links to vaccine websites off to the right, and there are some good ones there.  I am so tired of being asked about this at the NICU.  We've already explained many, many times to many different doctors what our plans/views are.  Another doctor asked again yesterday, and said he wanted to sit down and talk about it today.  SOOOO I printed off 40 or 50 pages worth of information about vaccines, and then went through it all and highlighted everything that I thought was pertinent to our situation.  Good thing I got up early this morning.  I took it in to give to said doctor, and guess who wasn't there?  Yup.  It's ok, I will shove it all in his hands the next time I see him.  I will say, "here are some of the reasons we don't want to vaccinate just yet.  If you want to give me any reading materials, I will gladly read them."  (two little ninjas just came to my door!)  I hope he will actually read some of the stuff I give him.  I could go on, but I will stop.  Can't they just write it in our file that we plan to wait until he is older to start vaccinations, and just stop hassling us about it?  Ok, stopping now.  

I think that's all I have to say today.  I will have to put a picture of Zeke in his costume up later.... I don't have one just yet, but he's awfully cute!

Thursday, October 30, 2008

I did my to-do list

I did everything on my to-do list today!  Yay!  Pat me on the back.  Ok, since you can't reach, I will do it for you. :) 

I feel like I never, ever get enough things done in a day.  There is always something else to clean, something in the fridge that needs to be cooked, oil needs changed, laundry needs done, bills need payed, animals need fed, laundry needs done again, I need showered, and the list goes on and on and on.... as I'm sure it does for you, as well.

Here is my solution!  Acutally, Daniels solution.... he suggested it: Make your to-do list shorter.  Amazingly, it works!  Instead of writing on my daily to-do list (which I write every morning while pumping) enough things for a week and expecting to get it done in one day, I write enough for one actual day.  Or maybe even a little less than enough for one day.  Then I'm sure to get it all done, which makes me feel better, which keeps me motivated to do it all again the next day.  You see, I LOVE crossing things off my to-do list.  If I cross off less than half, I feel like a failure.  A short to-do list cures this problem.  Here was my list today.  

pump (8 times)
mail bills 
clean for 1 hour
visit Ezekiel
take care of animals (there's a lot!)
make dinner

I did it all!  Ok, I still have to pump more before bed.  But my to-do list got done.  Here is what my to-do list would normally look like, before Daniels sage advice...

pump (8 times)
visit Ezekiel
clean out car
get oil change
schedule ob appointment
pay bills 
take care of animals
change air filters in the house
put air in car tires
clean garage
organize upstairs closet
5 loads of laundry
file giant stack of misc. papers
dust light fixtures
bake bread for the week
excercize
grocery store
change burnt-out lightbulbs

You see how I can become overly-ambitious?  And then, in my overly-ambitousness, I get next to nothing done.  I don't understand how I can have such a strong desire for cleanliness and organization and have my whole house/life be so unorganized.  I guess I'm just not disciplined enough.  But I'm getting better.  My new plan is to clean one hour a day (on top of daily things like dishes, bed-making (ha!),  and the occasional load of laundry) and then.... stop.  No more cleaning for that day.  This is what usually happens:  Our house becomes a giant disaster over a few weeks.  I hardly clean at all, hardly pick up anything that lands in random places.  Then I just can't take it anymore, and spend literally an ENTIRE day cleaning.  Then I am so sick of cleaning that i don't clean for another few weeks.  Then it all starts all over.  I hate this cycle.  I want to live in a clean house ALL the time.  I don't like clutter.  I don't like worrying about tripping over things on my midnight treck to the bathroom.  

Anyway, my new plan is working well so far.  My dear friend Aimee is keeping me accountable to my daily hour committment.  So far it's been 3 days, and so far I have kept up, and there is an improvement in the state of our house.  My only problem is that once I get going, I don't like to stop.... so when my hour timer goes off (yes, I need a timer) I normally keep cleaning for another half hour, at least.  Today I must have cleaned for 3 hours.  And that's where the problem comes in-- I don't want to clean that much everyday because it's demoralizing.  I also tend to get caught up in little things... you know, loose sight of the forest for the trees..... so while you can't walk up the steps without tripping on some piece of clothing, roll of toilet paper, or random shoe that is trying to make its' way upstairs, and our bedroom is strewn with clothing and books,  I was cleaning the vaccume cleaner, scrubbing baseboards, vaccuming spider webs from the ceiling, scrubbing the front door, and taking down the curtains to give them a wash.  Hello Kristin!  Pick up all the crap on the floor before you wash the curtains.  It's common sense.  Sigh.    But regardless, it all needs done, and as long as something is cleaned daily, I'm doing better.  And better is all I'm going for right now.  

In other news, I want to make this for Ezekiel.  I'm really excited about it.  I ordered the rings so now all I need is some nice fabric.  Ooooh yay....  I can just see myself happily buzzing away on the sewing machine with a nice hot cup of coffee and christmas music playing in the background (yes, it's time for christmas music!).  Snuggly slippers and pajamas on.  House perfectly clean.  Me feeling perfectly domestic.  Ahhh... what a lovely picture.  My overly-ambitious self wants to make many slings for all the babies I know who are making their way into the world right now.  But my reasonable self tells me to just make one first and see how it goes.  I'm trying to start listening to my reasonable self.  

Oh and by the way.... be sure to participate in my poll in the top right corner.  Who voted for the chevy prism?  Daniel, was that you?  

Wednesday, October 29, 2008

But dust

This was too cute.  Thanks Teresa! 

I think this Mom will never forget this particular Sunday sermon... 'Dear Lord,' the minister began, with arms extended toward heaven and a rapturous look on his upturned face. 'Without you, we are but dust...' He would have continued but at that moment my very obedient daughter who was listening leaned over to me and asked quite audibly in her shrill little four year old girl voice, 'Mom, what is butt dust?

He's as heavy as a sack of potatoes!

Ezekiel finally weighed in at a whopping 5lbs last night!  YAY!  He also got to try and eat from a bottle.  Unfortunately he didn't do so well... he would suck, but he wouldn't swollow-- he would just let all the milk dribble out of his mouth.  He was very wide-eyed and alert, as you can see in this picture.  He is 12 weeks old today.  
I thought I would put up some baby pictures of Daniel and I.  You all will have to let me know who you think Zeke looks more like!  This is me and my mom.  I don't have any newborn pictures of myself.... you wanna e-mail me one, mom? :)
 The picture below is Daniel as a newborn.  Obviously Ezie looks an awful lot like his daddy!Yesterday they decided to send off cultures to make sure Ezie isn't still carrying MRSA.  Please pray that the cultures come back negative.  If they don't, he will have to go back on contact precautions (ie we won't be able to touch him skin to skin anymore!).    Other than that, everything seems to be going well.  
Oh, and (thank God!) I no longer smell like onions!  

Monday, October 27, 2008

Pajamas!

video

Warning:  Do not keep reading if you are easily grossed out.

Does anyone know why I smell like onions?!  Not just any onions--- purple onions.  All the time.  I'm seriously embarassed to be around people.  It's very strong- Daniel can notice it from a distance!!  I suppose this started 5 or 6 days ago, and it's bad.  I haven't been eating any onions at all.  In fact, I normally eat a LOT of onions and never have any problems.  But with Daniel on the raw milk diet I haven't been cooking at all, so no onion intake.  I don't understand.  Deodorant isn't helping!

I did notice that durring pregnancy I had a very notable lack of body odor.  I could sweat and sweat and I wouldn't smell at all.  Then immediately postpartum I stunk horribly for about two weeks.  Then back to normal, and now this.  I have been taking fenugreek to help with my milk supply, and so I thought it could be that.  But everything I googled said that fenugreek makes you smell like maple syrup.  I would much rather smell like yummy maple syrup than stinky nasty onions.  

Ok, other moms, let me know what's going on here!  I need your help!!
OH my goodness I can't believe I haven't posted in a week!  My how the time flies.  Between the hospital, pumping, sleeping, showering, taking care of animals, cooking (haven't done much of that), and doing any sort of cleaning (haven't done much of that, either...) I seem to run out of time to post.  I'm trying to get back on a normal schedule instead of my stay-up-till-3-sleep-in-till-10 schedule.  I don't like that schedule.  But the wee morning hours have been my usual blog-update time, and so hence no blogs lately.  
Ok so here is the Zeke update:  He is 4lbs 13oz!!  He is still on 3.5 on the vapotherm, but they may bump him back up to 4 because he has been breathing really fast and requiring more oxygen support.  We don't know exactly what's up with that; it could be that a portion of his
 lungs are colapsed again.  Hopefully that will correct itself soon.  Exciting news:  He's off contact precautions!!  YAY!! And He's wearing clothes!  He looks sooo darn cute, too.  Ok time for a million pictures!

Time with daddy.



These are the booties I made him.  They will fit for a while!



I am super frustrated with blogger right now.  Is anyone else having a hard time uploading pictures and getting the format right!??  GRR!  

Monday, October 20, 2008

Picture of the day

This picture isn't from today.... but I couldn't leave you all picture-less any longer.  I will take more of him this afternoon :)

4 steps forward!

Ezekiel made 4 steps forward today, how exciting!

1.  He made a big jump in his weight-- from 4lbs 3oz to 4lbs 7oz!  Yay!!  He passed up his doubled mark, which was 4lbs 4oz!

2.  He got his pic line out (that's kind of like a really long IV that goes in his arm/leg and runs all the way up a vein and ends next to his heart) because he is done recieving antibiotics and steroids!!  

3.  He cried and made tears for the first time!  (unfortunately i missed that... but Daniel told me). 

4.  He had a real bath for the first time!  No more sponge baths!!

It was a good day.  I must have held him for at least 4 hours today, and he was all cuddly and smiley and sleepy.  It was wonderful.  

Tonight while I was there, the very kind respiratory therapist, Raul, told me that he thinks Dr. Kita's insistence that Ezie will go home on oxygen is a "premature diagnosis."  He thinks it is too early to say that, and that there is a good chance that he may not need it by the time he heads home.  I love this guy, Raul.  He is sooo so kind.  I swear you would never know he is in the military-- and we just found out he is a command sergeant major (aka very high ranking!!).  For those of you familiar with military culture, you would know that normally csm's would treat a mere sergeant (Daniel) like the scum on their feet.  But he has been soo soooo kind to Daniel.  He told us, "just forget about that whole command sergeant major thing".   Last night when I was there he came up to talk to me while I was crying.  My hands were full holding Ezekiel, so I had no way to wipe my eyes.  He got some gauze (I guess that's almost like a tissue!) and told me to close my eyes, and he wiped up all my tears.  It was so sweet and caring.  He has told us many times that he prays for Ezekiel, and he always takes quite a bit of time to sit and talk with us.  It's so wonderful to have a Christian community in the NICU.  There are actually quite a few Christians.  

Strange story-- Tonight in the NICU was one of my old Starbucks customers!  (for those of you who don't know, I worked at a starbucks in town for a little over a year.   I quit when I was about 2 months pregnant with Ezekiel.)  His name is Bruce, and he was always one of the nicest, happiest, most sincere customers.  Well it turns out that his wife is one of the NICU nurses!!  She is also one of the nicest and most sincere nurses, and when I found out they were married I was very happy because I can see how well they fit together.  It was funny, though, because I have known this guy for a year or so!  Crazy!  I have actually seen a few other customers in the hospital, as well.  I really miss working there, it was just soo much fun.  I loved knowing all my customers.  I miss a lot of them!  

Alright it's very late, and guess what I have to do.  Just guess.  :)

Sunday, October 19, 2008

A-Ha ha ha ha ha


Ahhh this is toooo funny. I think it's hysterical, Daniel thinks it's stupid.... So he keeps singing it to me to make me laugh! And I do! :) Here is the original.

Saturday, October 18, 2008

This is just the beginning

Yesterday we had a "care conference" with some of the doctors in the NICU. It was a very disheartening meeting for me. First of all, they (or just this one doctor) said that we aren't allowed to touch Ezekiel. He is on "contact precautions" because he has MRSA, and so to hold him, touch him, straighten his blanket, stick his paci back in, we have to be wearing a gown and gloves. He can't have any skin to skin contact. I can't tell you how much this absolutely breaks my heart. And it infuriates me. Kangaroo care (skin-to-skin contact) is one of the MOST IMPORTANT thing for any baby, especially a preemie. There is this new doctor (We will call her Dr. Know-it-all, or Dr. Kita. I don't know her real name) who thinks she can come in and change everything around, and so she is the one who told us no more skin to skin contact. Before she came around the doctors just said to be very sure to scrub our hands well before and after holding him, and not to touch anything else in the unit with "dirty" hands. But now she is apparently the new final word. She tried to act comassionate saying things like, "I want you to be able to kangaroo your baby as much as do". But obviously that cannot be true.

Here is the story with MRSA. At least 50% of the general population has an MRSA colonization (ie they carry MRSA but are not infected by it). The percentage is higher in hospitals, because MRSA is mainly found in hospitals... it's a hospital disease. Being infected with MRSA is a totally different thing. Being infected makes you very very sick, and Ezekiel was infected. Now he is better-- he has had 3 negative blood cultures saying he is no longer infected. However, he still has a colonization. Here's the double standard: if most people in the hospital are colonized with MRSA, as Ezekiel is, why is he on contact precautions and everyone else isn't? I'm going to ask the doctors today. And the only right response is for them to either take Ezekiel off or to put themselves on contact precautions. Am I right? I'm right.

The worst part of the conference, though, was when Dr. Kita explained to us that our NICU experience is just the beginning. She told us that for the next 3-5 years Ezekiel will have to see all sorts of therapists. Speech therapists, physical therapists, sensory therapists, every kind of therapist. She said we would have to take him in for therapy multiple times a week, or sometimes people will come to our house. We will have to have home health care help with his oxygen at home. (according to Dr. Kita he will "definitely" come home on oxygen. Pray that he won't need to do this!). This is all just because he was premature. There is nothing specifically wrong with him that they currently know of on which Dr. Kita is basing these statements, other than the fact that he was born early.

Now, I had a nebulous idea floating around in my mind that raising a preemie would be a little different than raising a full term baby. I've at least read a little bit about it. But I kind of thought that it wouldn't be that different. You know, a few extra doctor appointments, maybe he would need glasses, he might be a little shorter or smaller. According to what we were told yesterday, we are in a whole different ball game. We have a "special needs" child. We need to have "early intervention". I absolutely felt slapped in the face. I know some of you are familiar with some of these things. I know very little about what it will be like to have to live with all this. And of course, it could just be that the doctors are giving us the worst case scenario when they emphatically say he will need all this therapy and help.

This is all about perspective, too. Daniel has a different perspective. He was a "special needs" kid. He was in the special-ed classes in grade school. He was diagnosed with several learning disabilities. And now he is incredibly intelligent, as most of you know. He says that all of the one-on-one attention he got as a child helped him a lot. Of course I want to give Ezekiel the best chance possible, and if that means therapy then I want him to have therapy. I just had always thought that Daniel and I would be able to give our children the best care without "prefessionals" intervening. One more thing lost.

The other worst part of our care conference yesterday was Dr. Kita confronting us on the things we had apprently been doing wrong. A little slap on the hand for breaking rules that no one had told us about. That was incredibly frustrating and I don't want to write much more about it. Today Dr. Guerra (aka Dr. Russia from previous posts) apologized to Daniel for the manner in which we were confronted about these things. So that at least makes me feel better. Dr. Guerra is wonderful. We really really like him.

Obviously I am very frustrated today. Most of the doctors have been wonderful, and we have had a great experience so far with the exception of just a couple of nurses. But Dr. Kita is making things a lot more uncomfortable for us. We don't feel very comfortable in the NICU anymore. But anyway I need to go pump so no more writing for now.

Friday, October 17, 2008

This...

...is how I feel

Paci

video

Ezekiel weighed 4lbs 3oz today. Just one more ounce and he will be double his birthweight! He is doing a whole lot better than the last few weeks, although the doctors tell us his lungs are still quite full of mucus. Poor little guy. We've been able to hold him a lot more because.... he moved into a big boy bed! He is no longer in his incubator, he is in an open crib. He was able to move because he is now keeping his temperature up on his own. He seems to like being held, and is starting to stare at us for longer periods of time. He also chomps away on his paci durring most of his waking hours. Soon enough we will be able to start trying to bottle/breast feed. The doctors have talked about the possibility of him going home on oxygen. I'm not too excited about that, I wish he could come home with no "strings" attached. But... it would be better to have him home sooner rather than later.

Thursday, October 16, 2008

So this is a little lengthy... but worth watching.

This is the Constitutional Party candidate for president Chuck Baldwin talking about abortion and congressman Ron Paul's Sanctity of Life Act. We are voting for this dude. I know he won't win, but I just can't vote for either McCain or Obama. This is who Ron Paul is endorsing for president.

I have always been against abortion, but after seeing such tiny tiny babies in the NICU, I feel much more strongly than I did before. There is a 24 week, 1lb 1oz baby in there with us. Her name is Elizabeth. And she is alive and doing well outside her mother's womb. It is a horrible evil that the so-called pro-life republicans have had the ability to overturn roe vs. wade for so many years and haven't done so. I can't even write about it- it makes me too angry. I think the information in this video speaks for itself.

Vaccine research day

Well I am settling in to do a good few hours (or more) of vaccine research. Ezekiel is now a little over 2 months old, and we got a call from the doctor 2 days ago "just to let you know that we are starting his vaccines today." We told them no, they cannot start them yet. We want to look them all up first, and decide which ones he will be getting, or if he will get any at all.

So yesterday I asked for a list of the vaccines they would have started, and they gave me information packets on 5.

Polio
Hepatitis B
Haemophilus Influenzae Type b (Hib)
Diptheria Tetanus & Pertussis (DTaP)
Pneumococcal Conjugate

Just from reading the packets, we have decided NO on the hepatitis B, and I am thinking no for the DTaP. I think we may get the pneumococcal conjugate vaccine, because the doctors say Ezekiel has cronic lung disease (we're praying about that!) and that is apparently a risk factor in getting pneumococcal disease.

One thing I found interesting is that on these information packets from the U.S. Dept. of Health and Human Services (center for disease control prevention) it says, "Children who are moderately or severely ill should usually wait until they recover before gettting ----- vaccine."
Alrighty, NICU doctors, I love and respect you all very much, but Ezekiel is still recovering from mrsa and pneumonia, and you were going to stick him with all these vaccines that clearly say to wait until a child is healthy before administering them?? What's up with that???

I'm sure some of you are concerned that I am even considering not vaccinating my child. And some of you are concerned that I would consider giving him any vaccines at all. I'm not on either side of the fence here.... I am leaning towards the non-vaccinating side, but I do see the benefits of vaccination, and I understand a certain percentage of the popluation needs to be vaccinated to keep polio, etc, from resurfacing. Or at least I understand that argument.... I don't know if it is valid or not. Anyhow, I am certainly not going to stick my child with a bunch of vaccinations without knowing what they are, what their side effects could be, etc. Reading the information put out by the U.S. Dept. of Health is not satisfactory to me. I can't even imagine what sort of corruption could be going on between them and say, merck. I'm sure many of you already know I have little to no trust in the FDA. Sigh.... Maybe Daniel will write a blog for me about that....

Alright, with all that said, I want to be objective and fair. I don't want to harm my child either way-- vaccinations or not. Aimee, your wish has come true! I'm doing your vaccine research for you!

Wednesday, October 15, 2008

Happy 10 weeks

Ezekiel is 10 weeks old today!

He is doing well off the ventilator. Last night I got to hold him for about 2 hours- we had so much cuddly fun. :) Ok, so he slept... and I had fun. All of the night nurses are wonderful- it's nice to be there at night. I took them all pumpkin oatmeal chocolate chip cookies. Our nurse last night, Greg, put this adorably-dorky little "ourfit" on him-- it sort of wraps around him and velcrows on (to have easy access to all the iv's and things). Too cute!  This was the first time he wore clothes!!
Daniel is reading this book and is now trying a raw milk diet. We get our organic, grass-fed raw milk from Bob who delivers milk to San Antonio every 2 weeks. We got 18 gallons this week (gasp)!! There isn't room in the fridge for much else right now. I will let you know how Daniel's diet goes. He isn't dieting to loose weight (he has none to loose!)-- he is just seeing how he feels when he is done. This is a 2 week experiment.

The other day one of our chickens layed a giant egg. When we cracked it open, this is what was inside... ...Another egg! A small one, none the less, but still an egg.

Pumpkin Oatmeal Chocolate Chip Cookies

2 C. Flour
1 C. Quick or old fashioned oats
1 tsp. Baking Soda
1 tsp. Cinnamon (I put 1.5)
1/2 tsp. Salt
1 C. Butter, softened
1 C. Firmly packed brown sugar
1 C. Granulated sugar (I leave this out)
1 Egg, slightly beaten
1 tsp. Vanilla
1 C. Canned pumpkin
1 C. Chocolate chips

Preheat oven to 350.
Combine dry ingredients except sugar, stir.
In a separate bowl, cream butter till fluffy. Add sugar and continue beating until light and fluffy.
Add eggs and vanilla, mix well.
Alternate additions of dry ingredients and pumpkin, mixing well after each addition.
Stir in chocolate chips.
Drop rounded tablespoons onto cookie sheet.
Bake for 20-25 minutes (I only bake for 15. Maybe this has something to do with the missing cup of sugar?)
Eat cookies with a loved one in front of a big fire with hot apple cider wearing warm fuzzy sweaters. And warm fuzzy socks. :)

HAPPY FALL!!

Sunday, October 12, 2008

NO MORE VENT!!!!

I just got a phone call from our lovely nurse Bernadette informing us that they FINALLY FINALLY took Ezekiel off the ventilator! :) :) :) :) : ) :) :) : )

YAY YAY HAPPY HAPPY HAPPY!!!!

Sigh.

Now we can start doing things like holding our baby. That's never something I thought I would have to wait for. I'm so excited.

Meanwhile, said broken hot water heater was easily fixed by kind repair man.... who pushed a GIANT RED RESTART BUTTON. Oh dear. 6 hot-waterless days for nothing. How silly. Durring our hot water fast, I fancied that we were learning how to "rough it" by taking cold showers and boiling water to wash dishes. It was *almost* fun. But not quite. The end of the story is that I really really appreciate hot water. In fact, I am headed to the shower right now.

After I order checks. Because I am completely out.

Saturday, October 11, 2008

Not quite yet

Sooo... Ezie is almost off the vent.... Dr. Guerra (who is apparently from Cuba, but we thought he had a russian sounding accent this whole time. Before we knew his name, we dubbed him "Dr. Russia") keeps telling us every day that he wants to take Ezie off the vent ASAP. They were supposed to take him off last night. Hopefully today!! It should be soon.

They DID take his chest tube out yesterday. :) :) :) :) :) Yay!

Tonight we are spending time with our dear friends the Turners for the first time in weeks and weeks. I'm so excited, I just love them. They're so cool :)

We've made friends with a couple in the NICU. Their baby was born at 24 weeks and was 1lb 1oz. You wouldn't believe HOW tiny she is. She's amazing. Her name is Elizabeth, and you can pray for her, too.

I wish I could give you all a giant hug and a big fat kiss. Thank you so much for praying! I love hearing from you all in the comments section. Checking my blog is one of the highlights of my day :)

Alright I gotta rush off to the hospital. XOXOXOXXOXOXOXOXOXOXO

Wednesday, October 8, 2008

Happy 2 month birthday... 2 days ago

Happy Birthday Ezekiel! You are two months and two days old. You are such a big boy now.
video

Sunday, October 5, 2008

Progress

Hello everyone! I guess there are a lot of people reading this blog now... at least that's what my mom said. You should all leave me a comment! Even if I don't know you, I would love to hear from you. :) :) :) I love you Uncle Bob-bob and Aunt Linda!

Ezekiel was switched to a different type of ventilator today. He seems to be doing better on this new one. The settings are slowly creeping down... they are still high, but he is making a bit of progress. He also seems to feel less sick-- he was pretty calm and alert today. I even got this adorable video of him smiling :)

We are so glad to be done with that 72 hour window. We can finally breathe again! All your prayers helped get us all through, and helped Ezekiel make it. He's beating the odds! :) :)
In this picture you can see little arrows drawn on him. They did that because he had all these little red bumps on his skin, and they wanted to keep track of them. Fortunately after a few days of antibiotics they went away.

This picture is right after he got his chest tubes in. He was really sick here.

I love this little smile! I have an even better video of him smiling (actually I have about 700 billion videos...) but it takes our computer FOREVER to load even these short 10-second clips.

video

I'm sorry I didn't update sooner, but we blew a fuse and the electricity was out upstairs where the computer lives. Lame excuse, I know. Our hot water heater also broke so I've been boiling water to do dishes and taking cold showers.... brrr.... We'll get that fixed soon... hopefully...

Friday, October 3, 2008

49 hours

It's been 49 hours since they put Ezekiel's chest tube in... so we have 23 hours left until this "critical" stage is over. I think I forgot to mention this in my last post, but when they put his chest tube in, they told us that he had a good chance of dying within the next 72 hours. !!!!!!!! They said it was very important for nothing else to go wrong. He was at the ceiling of his ventilator settings and so if something were to go wrong, there were no more knobs to turn up.... we had a few scary moments yesterday. BUT THANKFULLY he is having a really good night tonight!! I just got back from the hospital and all night long his oxygen saturation level (how much oxygen he is getting in his bloodstream) was very high (94-100%) and they had to continually turn his oxygen level on the ventilator down--- now instead of the ventilator being set at 100% oxygen (that being one of the "ceilings" that made things so scary) it is down to 70-80%. Just fyi, the normal air we breathe has 21% oxygen. I don't know if all that made sense, but it means that he is getting past this risky stage. He is still very sick and on a LOT of crazy drugs... but he is getting better. I know he will be alright. Pray for his lungs-- his right lung is colapsed. They said in his last x-ray that it is starting to look a little better. The combination of his premature lungs (which they call lung disease. Acutally they call his lung disease "bronco pulmonary displasia", or bpd... which just means severe cronic lung disease) and pneumonia and the air pocket/chest tube is a lot for him to deal with. But they said they are amazed at how well the rest of his body is doing... they said that if you don't look at his lungs you would never know he is sick-- nothing else at all is wrong, everything else is very healthy. I know there are so soo many people praying, especially today, and I can see a huge difference not only in Ezekiel's health but also in me. I don't feel like I'm going to throw up all the time now. I was literally unable to sleep because of anxiety that made me feel sick all the time.

Speaking of sleep, it is very late. I mean early. So I am off to bed. :) Thank you Jesus for helping Ezekiel so much today.

Wednesday, October 1, 2008

Rewind

Sigh. Ezekiel isn't doing so well. Last friday (? I believe?) he had laser eye therapy for retinopathy of prematurity (rop) which really isn't that big of a deal--- pretty standard for a premie. They sedated him, put him back on the ventilator (just for the procedure), dialated his eyes, and the opthalmologist did his laser thing. He said it was one of the easiest therapies he had performed in his 15 years of practice. Doing good, Ezie comes back off the ventilator on Saturday. Doctor Lefkowitz (sp?), one of our favorites, says that all he needs to do is learn to eat, then he can come home--- maybe 2 or 3 weeks.

Then saturday night (sunday morning) he crashed. He had to go back on the ventilator. It turns out that he has pneumonia and mrsa. I think that the stress of the eye therapy weakened his immune system enough to let these things cause him to be sick (he has had a mrsa colonization for quite a few weeks now, but hasn't been sick from it. A lot of people are colonized with mrsa but do not get sick from it.) So that was Sunday. It's been awful, because to be on the ventilator (it's called a high-frequency or oscillating ventilator) he has to be sedated, otherwise he "clamps down" (he gets stressed from the ventilator and then fights it) and causes his oxygen saturation level and his heart rate to drop, while raising his blood pressure. So no more cute little eyes looking and us, no more little "gas" smiles (I swear they are real smiles). No more wiggling arms and legs. When the sedation wears off, he cries (but makes no noise because of the ventilator in his trekea) and kicks and flails around, and his nurse comes and knocks him out again. I think the saddest thing I have ever seen is to see Ezie cry without making any sound. It just breaks your heart. It's like that crying that children do when they get hurt--- you know, they take a deep breath, have that awful crying look on their face, but everything is quiet-- and then they start screaming bloody murder. It's like that, but the screaming never comes. It's awful.

His mrsa (methicillin-resistant Staphylococcus aureus) is the kind that lives in hospitals, not the community kind. So don't worry, he will be ok. The hospital kind is not nearly as severe as the community kind. He is being treated for both that and the pneumonia and is responding well.

Last night I went to the hospital around 9. At 10:30 he had a "spell" (his stats dropped) that they had a hard time getting him to recover from. I watched as his skin turned grey. They "bagged" him (manually ventilating him instead of using the ventilator) and that still wasn't working. Finally he recovered, but they knew something was really wrong. Immediately they took an x-ray to see his lungs, as they could hear with the stethescope "diminished lung sounds", meaning they couldn't hear him breathing on his right side. The x-ray revealed that he had an air leak in his lung, and a large pocket of air between the outside of his lungs and his ribs/skin. This was pushing on both his lungs and his heart, causing the amount of air he could breathe to be diminished, and making his heart work much harder. They had to immediately put a chest tube in to keep him from dying.   I left while they did this, and called Daniel. We waited for at least 3 agonizing hours in a very cold waiting room as they did their thing. About every hour they came to tell us that it wasn't quite working.  The doctor looked so worried, sad and apologetic- I don't think she believed he would make it.  By the end of it all he had 3 chest tubes. And it worked, thank God.

Finally at 3am we went back in to see him. They had him heavily sedated and they had temporarily paralized him. There was still some blood splattered around his bed, on his sheets. He was perfectly still, and had all this gooey stuff over his eyes to keep them from drying out, as he can't open/close them while he is paralized. There were 2 chest tubes still in (one didn't work so they took it out). He looked just horrible. I cried, and we stayed there until about 4:30, then we came home. Today they have taken one more chest tube out, so now he just has one. We're exausted. It's the next day, I've slept 6 or 7 hours, and I still have a pounding headache.

All this of course means he won't be coming home in 2-3 weeks anymore. Now hopefully he will make it home by thanksgiving.

The good news is that he has been gaining weight. There were about two weeks where he weighed the same--- 3lbs 4oz. Finally he is doing better and gaining weight steadily-- he is up to 3lbs 14oz. He has even still been gaining weight while being sick, which is a good sign. I imagine that he may slow down a little on his gain after this whole chest tube incident. Pray for a quick recovery, pray for him to get well from his sickness. Pray for us, too. We're completely wiped out. I had myself paced for him to be home soon-- now I just don't know how to make it until thanksgiving.

Today he is 8 weeks old. In 2 hours and 58 minutes.