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.
Showing posts with label nicu. Show all posts
Showing posts with label nicu. Show all posts
Friday, October 3, 2008
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.
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.
Thursday, September 25, 2008
Cutest
This is what happened right before I turned on the camera.... Daniel reached into the isolette (that's the plastic box Ezie lives in... which Daniel insists is just a rubbermaid container) and put his finger in front of Ezie's face. Ezie looked intently at his finger, and then reached up and grabbed it. It was soo cute, and looked so deliberate. I don't know if he is big enough to put thoughts together like "reach up and grab this thing in front of my face" but it sure seems like that is was he thought. I only caught the end on tape. This is from a few weeks ago.
OH and please excuse my high squeaky voice. I swear I do not sound like that in real life, or if I do, it's just when I'm talking to babies.
OH and please excuse my high squeaky voice. I swear I do not sound like that in real life, or if I do, it's just when I'm talking to babies.
Wednesday, September 24, 2008
It's been too long
After talking to my friend Aimee yesterday (ehem.... cough cough... leave comment....) I realized it's been a while since I've posted a new blog. Sorry guys! I really do love you all. I know you're just dying for new pictures! :)
Sooo... all the doctors and residents in the NICU start their responses to our questions with the word "so". Every. Time. It was weird/annoying at first and now it is just funny. I wonder if they teach them to say that? Or if it was just something they all picked up from a head doctor or something? Just hysterical.
So, here is our first family photo!
This is Ezie's "praise Jesus!" picture.
Ezie and his Daddy. I love the look on his face in this one!
Sigh.
This is the sweater I finnished. I have so many almost-finnished projects. But this one is done! Hopefully it will fit him through the winter. Thankyou Sarah for your lovely pattern! You rock! It was wonderful to knit up. I have a second one in the works for my friend (also named Sarah) who is due two weeks after Ezie was supposed to be due. They are having a girl, so instead of blue hers will be white, and I think I will embroider some pink flowers on. I will of course put a pic up when that one is done, too. 
Sooo... all the doctors and residents in the NICU start their responses to our questions with the word "so". Every. Time. It was weird/annoying at first and now it is just funny. I wonder if they teach them to say that? Or if it was just something they all picked up from a head doctor or something? Just hysterical.
So, here is our first family photo!
This is Ezie's "praise Jesus!" picture.
Ezie and his Daddy. I love the look on his face in this one!
Sigh.
This is the sweater I finnished. I have so many almost-finnished projects. But this one is done! Hopefully it will fit him through the winter. Thankyou Sarah for your lovely pattern! You rock! It was wonderful to knit up. I have a second one in the works for my friend (also named Sarah) who is due two weeks after Ezie was supposed to be due. They are having a girl, so instead of blue hers will be white, and I think I will embroider some pink flowers on. I will of course put a pic up when that one is done, too.
Thursday, September 11, 2008
Some lovin'
On a total Ezie-craving whim I drove over to the hospital at 11 tonight... quite a bit later than usual. When I was there, our nurse asked me if I wanted to hold him! :) :) :) :) I was so surprised!! I thought we still had a while until that would happen. She said that not all the nurses are comfortable with the parents holding the baby while he/she is still on the vent.... I think she is just trying to be on our "favorite nurse" list. :) 
Here are a few pictures of Daniel lifting Ezie up so our favorite nurse (ok... one of two favorites. Our favorites are Greg and Jerry. This was Greg.) could change the sheets under him. These are from this past weekend.
Unfortunately Daniel wasn't there tonight when I got to hold him. He will be sad that he missed it. But Maggie (the nurse tonight) said we could hold him again tomorrow night as long as he was doing well. So hopefully Daniel can hold him tomorrow!
I am a little sad because they are putting Enfamil human milk fortifier in his milk. He is at the maximum volume he can digest (23ml!) for his weight, but there are not enough calories in the milk for him to gain weight well. So they add this powdered milk fortifier to add the extra calories (and extra vitamins/minerals). We aren't particularly thrilled about it, because it contains soy and corn syrup solids. Hello!! I totally don't want to be feeding my baby corn syrup and soy. We asked about alternatives and Greg our nice nurse was very understanding. I guess he said something to the doctors and so apparently they are looking up information for us about other options. I asked Maggie tonight if we could just feed him extra hind milk and with a mystified look and a scrunched up nose she said, "what's hind milk?" Oh dear. I explained how they could take the cream off of some of the milk and add it to the milk they were feeding him. She didn't seem thrilled. Oh well, I will talk to the docs tomorrow. If he has to get it then I guess it's ok. Hopefully he won't need it for too long.
Sunday, August 10, 2008
Surprise!
Ezekiel Solace Pike
born August 6, 2008 5:52pm
born August 6, 2008 5:52pm
2lbs 2oz
13"
Ezekiel: God Strengthens
Solace: Comfort in times of distress
We had our baby! He is 3 months early, poor little guy. We're still unsure why he decided to come so early. He is doing very well. Here is the story...
I woke up wednesday morning around 3:30am with contractions about every 6 or 7 minutes. I didn't know what was going on as of course, it's not time yet! At 4am I got in the bathtub and stayed there an hour while Daniel went to pt (physical training). When he got home at 5 I was still in the tub and miserable. We looked in our pregnant books to see what was going on, thinking maybe braxton hicks, right? Once we realized that wasn't what it was, we decided to call our midwife, Joi. She said I could possibly be dehydrated (I had had the flu sunday and monday) and to drink as much water as I could in an hour... if I wasn't better by then she told me to go to the ER. Soooo I drank and drank and contractions got closer.... 6:45am we decided to go to the hospital. When we got there contractions were just a minute or two apart and we soon discovered I was already 6cm dialated (and not dehydrated at all). At this point they rushed me up to labor and delivery. They put me on drugs to slow down my contractions and to *hopefully* stop labor (at which point I would have been on bed rest in the hospital until the baby came... as long as 3 months.) The idea was to keep the baby inside me as long as possible so they could administer steroids to him which are needed to help him breathe once he is born. (As you can imagine I was very unhappy to have to take these drugs but my midwives assured me that the things they were giving me were absolutely necessary for Ezie to live.) They hoped to keep him in me up to 48 hours to give the drugs time to take effect. Well, after the drugs my contractions slowed down and I layed in bed all morning. At 2pm they checked and I was 8cm. At 4:45pm I was fully dialated, but my water still hadn't broken. Since they couldn't stop labor they took me to the birthing room to break my water and start pushing. After 20 minutes of pushing, Ezekiel was born. We were only able to touch his head briefly, as they needed to wisk him away to the NICU and make sure he would be ok. That was the hardest part, seeing him being carried out of the room right after birth. But it was necessary and I am glad they were able to help him. He is a strong little guy-- he cried when he was born! Most premies can't cry when they are this early- all the doctors and nurses were surprised. God is so good to us! Anyway, Daniel was able to go watch as they got him stabilized. I, of course, was still in the delivery room delivering placenta. (the placenta was amazing to look at. My midwife and the doctor both said I had a very large and healthy-looking placenta.) I felt soo soooo relieved once Ezie was born. All you women who have given birth know what I mean, I'm sure. I felt empty though... no more baby kicks. :( I really miss him being inside of me.
Today is Sunday so at 5:52 this afternoon he will be 4 days old. Yesterday they took him off the ventilator and hopefully today they will be able to start feeding him some breast milk. It's been a rough couple of days. We just got home from the hospital yesterday.
I'm sure many of you realize that we were planning to have a home birth, and this is not what we expected at all. But God has been so good to us in this whole experience. All of our doctors and nurses were very kind and very good at their job. No one tried to shove an epidural down my throat. No c-section, no episiotomy. Thank God! Overall our stay at the hospital was a great experience, and I really don't like going to the hospital. The only thing that really sucked was the IV in my arm. I am so thankful for hospitals and smart doctors in situations like this when they are really needed.
Now pictures!
This is the last picture of us before Ezie was born. Saturday, Aug. 2 @ camp sychar, under the tree where we met!
Ezie has to have this blue light on him to help with jaundice. To protect his eyes he has to wear a "batman mask".
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