Friday, October 31, 2008
Thursday, October 30, 2008
Wednesday, October 29, 2008
Tuesday, October 28, 2008
Monday, October 27, 2008
Monday, October 20, 2008
Sunday, October 19, 2008
Saturday, October 18, 2008
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
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
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.
So yesterday I asked for a list of the vaccines they would have started, and they gave me information packets on 5.
Haemophilus Influenzae Type b (Hib)
Diptheria Tetanus & Pertussis (DTaP)
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
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. :)
Sunday, October 12, 2008
YAY YAY HAPPY HAPPY HAPPY!!!!
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
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
Sunday, October 5, 2008
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.
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
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
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.