David Christopher was born on August 3rd, 2005, at only 26 weeks and 6 days gestation.

He weighed in at 1 lb, 4oz, and was 12.5 inches long.

Here's his story.

Sunday, April 30, 2006

April 2006

APRIL 2006

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04/01/06

Need prayers for David please....

About an hour ago David started to act like it was really hard for him to breath - he started making a clicking noise with his tongue - the nurse said it was because he was dehydrated (?)...anyways he started turning really purple, and so I called the doctor and we started a breathing treatment. The doctor said come right in, but the breathing treatment really helped him, so I called her back and she still wanted him to come in and get his oxygen saturation checked (because they won't give me a pulse ox)...so Javier and Valerie just left to take him up there - I can't miss anymore work so I can't go...but I will update when I have one. Please say a prayer that we don't end up back in the hospital. Thanks.......

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We're back in the hospital

Apparently when they got to the doctor's office his sats were 65 - Valerie said that she didn't think that machine was right, though, because it showed his heartrate at only 130. So they've admitted him and they are putting him under a "mist tent" I guess for moisture? I don't know much else. All I know is that I have to stay at work because I've missed so much before that I'll get into trouble if I call off :(


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Update

Well, he's been admitted for respiratory distress - apparently I was wrong on the numbers earlier, he was satting FIFTY SEVEN in the doctor's office, but he was still pink??? I HATE HATE HATE those machines. Jesus. Anyways, he was dehydrated, which I knew already, I had tried to keep up with it with pedialyte, but I didn't do enough of it I guess, so they've started an IV to rehydrate him, but all they've let him eat all day is TWO ounces of pedialyte. GR! So tonight they are going to feed him formula (after MUCH b*tching on my part) starting at ten pm, and start back on his meds at that time also. They SAID that this is a "24 hour observation" but I seriously , SERIOUSLY doubt it, since for some stupid reason they've put him up to THREE liters of oxygen....even though now he's satting 98 (rolling my eyes).

Ug...can you tell I'm irritated? Anyways, my grandma is up with him for a little while so that I could come home, eat dinner, and shower (and of course update you guys). I'll update more as I get time.


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04/02/06

Another Update...
David is doing good - the doctors said his chest xrays came back fine (she said there was actually improvement from last month, which means his lungs are healing a little bit from his chronic lung disease), and he's tolerating his feeds good. He's happy & playful like normal also.

The doctors said that they were going to do one more feed at 80cc's and then the next one they will do at the normal 120cc's, and if he tolerates that well we can come home.

BUT

Then the stupid doctors remembered that he was at FOUR liters of oxygen. The highest my machine at home will even go is two liters. So the dummy put him down from four liters to one and a half, which obviously made him desat really quickly. Then they informed me that unless he can keep his oxygen saturation up he won't be able to come home today...what a big fat hairy surprise.

Anyways - gotta get back. Javier should be up and around soon to go relieve me (my sister is up there right now) so that I can come home and rest.

OH!!! Today for the first time EVER we found a pacifier that he can keep in his mouth! AND - I was playing with him, and he stayed sitting up for a few seconds before flopping over! WHOO HOO!!

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04/03/06

We're home

The official diagnosis? Dehydration. Apparently when he got dehydrated due to the diarrhea it made it harder for him to breath. The were able to wean his oxygen back down to 1.5 liters and sent us home today around noon. They also gave me instructions on what to do next time he's got diarrhea so he doesn't get dehydrated.

Unfortunately, they've told us no bottles by mouth, and just when we were starting to make some progress.

Oh well, at least we're home!


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04/05/06

More Pictures!!!

David in his cute outfit!



I love his feet!!!!





Check back soon for EASTER pictures!!! I hope to take them tomorrow!!!

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Costume Change! The ONLY time I could get him to smile!










I can't decide which one to have printed out. Should I chose one of the ones in the basket? Or one of the ones in his suit? HELP ME.

VIDEO OF DAVID IN THE EASTER BASKET


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04/07/06

Ugh...not again PLEASE?!?!?

David is getting diarrhea again. Last time he got diarrhea we ended up in the hospital for dehydration. At about 1am I began replacing his formula with pedialyte, which is what the doctor told me to do the other day when we were in the hospital. She said that she hoped it would keep him from getting so dehydrated that it made it hard for him to breathe.

Ugh. Please send good thoughts that we don't have to go through this AGAIN....


UPDATE

OK - here's what happened. Last night at about one am David had his first diarrhea. I immediately started pedialyte to try & keep him from getting dehydrated. But - it didn't work. His lips started to get real chapped and his mouth started to get real dry. This morning at about ten am he went into respiritory distress, and we rushed him to the hosptial. They were unable to get him breathing deep again and they intubated him. Apparently he got so dehydrated that he was unable to breathe.

So - unfortunately he's back on the vent. The doctor said it was just until they are able to get him rehydrated so he can breathe again. He's sedated. They were unable to get an IV in so they put some sort of needle into his bone - I don't know much about that right now, but they were able to take it back out once they got a central IV in.

So, that's the update for now. I'll keep you all posted. Thanks for the prayers - I really need them now.


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04/08/06

Need lots and LOTS of prayers for David. PLEASE.

Tonight at about 10:30 David went into a pulmonary hypertension crisis. Apparently this means his blood vessels contract and there is no way to get blood to the heart or to oxyengenate him. His heart stopped one time for two minutes (I gave some people incorrect information earlier). He was satting in the 20-30s. They were not able to bag him to get his sats up, and they put him on the high frequency vent. Some of you might remember he was on this vent back when he was a month old. They had to give him lots of drugs to paralyze him so he will not try & breath against the vent. The doctor said he is lucky to be alive right now, that alot of times it is very difficult to pull babies out of this situation once they are in it. She said her outlook still isn't very optimistic.. They pushed alot of different medicines into him to keep his heart beating. Because of all this cold medicine his body temperature dropped to 92 degrees, so they put him under this blow up thing that keeps him warm. His hemoglobin dropped (I think to a ten?) and they are giving him blood.
I'm not even going to go into how I feel right now. I can't bear to type it. All I am going to say is hold your babies tight tonight.
And please pray as hard as you know how for my baby boy. I cannot live without him.

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Update

Nothing has really changed since I've updated everyone before - he's considered critical but stable. He's still on the high frequency vent of course, and they've had to go up to 98% oxygen. They had him down to 75% at one point but he didn't tolerate that at all and they had to go all the way back up to 100% and they are SLOOOOOOOOWLY weaning him. They've started and stopped a few medications.

The doctor still is reluctant to say that he will live - she says he's very lucky to be alive and we'll just have to play it hour by hour, day by day. So that's what I'm doing.

I cannot even begin to thank you all enough for your enormous prayers and support right now. We certainly need it. Please, please, please don't stop now. We are by no means out of the woods. Maybe God will get tired of hearing everyone ask and let me keep my baby boy? I told David today that he's gonna have to tell God that it's not his turn to have him yet.

I've chosen denial as my escape route. I've come home to update you all and grab some movies but I know I can't stay here long because it's too hard to look at all his stuff laying around - the empty syringes from his last medicine dose, the feeding pump, his boppy, blankets, bouncy seats. I can't be here because I know deep down that he may never use them again.

OK - I have to stop this. I can't cry anymore. Thanks again for the prayers.


Just a reminder as to who we're praying for:




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04/09/06

Another Update

There really isn't much of an update tonight. Dr. Dave told me that instead of focusing so much on what happens minute by minute to focus on what happens in 5-6 day spans. In other words, on Thursday, I can look back and evaluate whether or not he's improved. Really not much has changed at all. He's on slightly lower vent settings. He's still very swollen. He's still on the paralytic drug so he's not moving at all.

Javier and I are doing good. Since nothing is happening at the hospital we are taking turns coming home for a few hours. Neither of us like being here for long - we agreed that it just doesn't feel right being here. So we both spend a majority of the day up there.

The people at my job have been amazing about covering my shift for me when I have needed it so far. I don't have to go back until Tuesday. Tomorrow morning I will talk to my boss about getting some sort of extended leave approved so that I don't lose my job. I hope it goes well. That's the LAST thing I need right now. I hope to not have to go back to work at least until he's back on the conventional vent. Which, if all goes GOOD will probably be no sooner than another week.

My mother in law is flying in on Tuesday from Miami, FL to be with us. That will be nice because it will be an extra person to help us get rest.

I think that's all the update I have. Thank you all for all your support.

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04/10/06

Huh.

This morning started out kind of scary. David's color was turning a dark purplish color. He was on 100% oxygen and only satting about 88-90. I started to get very very scared. I went down to the chapel in the hospital and prayed to God. I prayed my heart out. I wrote a prayer request and a letter to God and stuck it in the box. A pastor then came up to our hospital room and prayed over David.

Then an amazing thing happened. Dr. Levy came into the room and told me he was going to try something different. I left because that kind of thing makes me nervous. When I returned a few minutes later Dr. Levy had the conventional vent all set up. David was pink again. And he was satting 99! The did a blood gas and it came out good! He's still on high vent settings but it's the REGULAR vent and not the high frequency vent! They are keeping him on the paralytic med, the sedative, and the pain medicine for now. So he's still very sedated. And he's still very swollen.

This by no means we are out of the woods. But it is definitely a good thing. Please keep the prayers coming.

Another quick update

When David got put on the conventional vent he was put on 80% oxygen. The doctor wanted to wean him as long as he was satting above 88%. He is now down to 40% oxygen. David is fighting so hard. Keep on praying ok? It's working! I'll update as I get the chance.

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04/11/06

Complete turnaround?

They have been able to keep the ventilator settings at 40% oxygen and put the PEEP down to a 7. His oxygen saturation is 94-98 depending on whether or not he just had a breathing treatment. His swelling has gone down considerably and he's looking more like David and less like a marshmellow. He's still sedated but she did cut his paralytic drug in half today. I don't know when they will cut the rest out so that he can start breathing on his own. Hopefully soon.

And most importantly the doctor told me today that she felt 100% better about his chances after telling me yesterday that his prognosis was poor.

The only thing to worry about now is whether or not there are lasting effects of this episode. Tomorrow they will be doing a head ultrasound and will determine if his brain damage has gotten worse due to lack of oxygen when he coded.

Whatever. I don't even care if he has brain damage at this point. As long as I get to kiss him every day and I get the opportunity to watch him grow up and get chubby. Once I get him home I am never putting him down. I'm gonna have to buy a sling :P I might turn all attachment parenting on you guys, watch out.

I still don't intend on going back to work. Not until I am POSITIVE that everything is going to be okay. But, even the doctor's are amazed at his progress. I have a pretty special little boy.

David is MEANT to be here. Apparently there's a reason that he's still alive. So I must have a very important job ahead of me. I need to figure out what I can do to help him live up to his full potential.

In other news, my MIL flew in from Florida today to see David. She brought him some cute outfits and a Blue's Clue's pillow. She'll be here for two weeks. I can't imagine that we'll be out of the hospital in time for her to see him at home, but David's proved me wrong before.


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How much do you love these blinkies? Some women on my birth board made them to put in their signatures.






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04/12/06

Update and Before & After Pictures

Let's see - there's not alot of changes today, David is still doing alot better. They didn't wean any meds today but the paralytic drug is wearing off a little and now when you talk to him or touch him he'll move his little legs and arms. After worrying all night long about his head ultrasound today the doctor didn't even order it. The nurse said what they usually do is wait until they wake up and see if they even have reason to believe that they need the head ultrasound. I'm not sure what they'll do.

Anyways, I found some pictures that I took the night before David got really sick. Also I've taken a couple more of him in the hospital, they might be slightly disturbing if you aren't used to that kind of thing. These were taken after a significant amount of his swelling had gone down. Here are the before pictures:

Left over from the Easter pictures:


More fun with breathing treatments:




David in the hospital:




The machines he's hooked up to:




Our new home:


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04/13/06

David was taken off the paralytic drug, Norcuron, this morning. It wore off very quickly and within about an hour he was awake (although sleepy) and moving and kicking!!! He was trying so hard to get the vent out of his mouth so they had to kind of weigh down his arms with little bean bags (they call them frogs). Otherwise he would have extubated himself!!! It was so amazing to watch him today, knowing that this was my second chance with him that I had prayed so hard for.

I think the plan is to continue with the aggressive breathing treatments so that his lungs clear out, continue weaning the sedative and pain meds (they're both narcotic, so they have to wean slowly so as not to have him go through withdrawals), and hopefully get him off the vent. I don't have any idea as to when that will happen.

I talked to the cardiologist yesterday and he told me that although one half of his heart was larger than the other half due to pumping so hard it's nothing to worry about at this time. He said if David's lungs were as healthy as his heart we would be in good shape.

I'm tentatively planning to return to work early next week. I don't want to go back before I'm sure that everything is okay, but I do need to get back soon. I honestly think I'll enjoy the break from the hospital.


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04/14/06

Quick Update

I'm really tired today so I'm gonna post a quick update and I'll elaborate later.

David had a pretty good day today, they had him completely off of the narotic sedatives and he was only on a couple of oral sedatives (milder) but then his belly started to swell and he began to bleed from his button so they stopped his feeds and oral meds, therefore had to put him back on the IV meds that they had just got him off of. His button had been leaking alot lately, and it's very raw around the hole but as of right now it's nothing to worry about. They were worried that it was a intestinal blockage but an xray ruled that out. They will be performing another xray at midnight to confirm that.

Good news, though - I got to hold him today! It was wonderful. He's such a sweet baby.

OK - I'm off to bed.

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04/15/06

Another Day in the life of David

David's stomach is back to normal now. Based on what the doctor told me, he had the equivalent of a stomach ulcer. Apparently when you are critically ill your body uses it's energy to keep you alive, and tends to neglect the less important areas of your body. Due to the lack of circulation in his gut, and the fact that they started feeding him so soon, he got this stomach ulcer. But, his tummy is all better now. They are still letting his stomach rest, though, so they still aren't feeding him at this time.

David got another blood transfusion today (the second one this hospital stay). And he's on alot of sedatives because he's a little stinker and tries really really hard to pull his tube out when he's awake. So they are keeping him sedated, but he's not on the paralytic drug...so he does wake up and move, but he's real groggy and just kind of looks at you through a drug induced haze.

They were able to wean his vent a little again today. When his stomach blew up last night they had to go back up on his rate because his tummy was taking up so much room in his abdomen and he couldn't breathe as deeply (like when you are pregnant and it's hard to breath) But they have him down to a rate of 28, which means the ventilater will give him 28 breaths a minute. It will allow him to breathe more than that if he wants to, but he's so heavily sedated that he doesn't.

Anyways, sorry this is so long. Things are looking good. He's my Easter Miracle. I have some more pictures I will post soon.

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04/16/06

My Easter Surprise

I got to meet Cat today!!! She called me early this morning - by the time I returned her call she was halfway here!!! I was so excited!!! She met her sister, Vanessa, here in town and they all got to meet David and then they took me to lunch!! I had so much fun!!! Here are the pictures that they took:

David








Cat & Vanessa's kids





Their men



Cat




Me and little man




Not much happened today, David pretty much slept through his first Easter. He's very heavily sedated still because he's an opinionated kid and keeps trying to pull his vent out. Tonight they had to kind of tie his arms down - but it wasn't barbaric like that sounds. They are tied really loose with a soft cloth and in a comfortable position. He can still move them, just not up towards his mouth so as to not pull out the vent.

Anyways, here are the latest pictures of David and his Easter Friends:


In this one you can see the scratches on the side of his head from the fight he got into (with himself)


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04/19/06

Bad News and Good News

Which do you want first? HAHAH

Bad News - Dr. Levy said this is going to be a longer hospital stay than we expected. He said he fully expects David to stay on the vent for at least another month, and that he will be in the hospital for at least another 2-3 months. I hope he's exaggerating.

Good News - We are getting moved to the bigger room, where there is room for TWO cots!! WHOO HOO!

Bad News - Dr. Levy said David's lungs look like a man who has been smoking for fifty years.

Good News - The Cat Scan they did yesterday showed no additional damage to David's brain!! WHOO HOO!

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04/21/06

OK - what have you all missed? David is still on the vent, of course. The doctor had previously told me that he anticipated him coming off the vent in about a month. Well, yesterday he told my husband it might be as soon as three more weeks....which isn't much different, in my opinion. He's up to full feeds now, but his G-button is leaking all the time so they are having to replace it with a larger one today. Also, his bowels are moving very slowly, so they are having to "help" him have bowel movements. He's no longer on any IV fluids but they are keeping the central line in, just in case. Sometimes he gets bolus sedatives through there.

David is on alot of sedation medication. In addition to his baclofen and clonidine, he's also on ativan and methadone, fentanyl and versed. (I think all of those are spelled correctly) Dr. Levy said that he gets enough medicine to knock out a full grown adult. The problem is his body is adjusting to these narcotic drugs so quickly, and like a drug addict he is needing more and more of the drug for the same effect (sedation).

I am going back to work on Monday. Not because I need the money, but because I need the distraction. Also I got a call from Kelly Services today griping at me for not "keeping them informed" on my situation. Ugh. Like I don't have enough to worry about. I had already talked Dawn about the situation, and she had told me to call her when things settled down. I guess there was a miscommunication somewhere, because Theresa did not sound happy with me at all. :rolling eyes: Oh well - David is more important to me than some "temporary" job anyways....


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04/22/06

David's Slideshow

Create your own video at One True Media



This is my new favorite song. It's called "He's my Son" by Mark Schultz. Here are the lyrics:

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understnad
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son


Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here

He's so tired and he's scared
Let him know that You're there

CHORUS

Can You hear me?
Can You see him?
Please don't leave him
He's my son


Laying with his new best friend:



Getting the tape changed on his tube (they gave him a bolus of the paralytic drug so he'd stay still for this)





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04/24/06

David is still stable...they had to stop his feedings though because of a possible ileus which is a kink in his intestines. Everytime they get up to full feeds his tummy gets really big and he doesn't have bowel movements. This is the second time this has happened to him. Last time they told me it was the equivalent of a stomach ulcer...but now I wonder if it's not the same thing.

So today they did a barium enema on him, which is where they put a tube in his hiney and fill his large intestine with a white liquid called barium, which they can see on the xray. It was interesting to watch...although nervewrecking. So they did that and found no obstructions, so I'm not sure if he had an ileus afterall....I don't know if they can get ileuses in the small intestine? I'll have to ask.

The problem is, in order for his lungs to heal he needs nutrition (and lots of time)...but they aren't able to give him feedings while his tummy is doing crazy stuff. So we're kind of at a stand still. The doctor showed me pictures of his lungs, though, from the cat scan...they look real bad.

They also did an ekg on his heart today, the person who reads them is out of town, though, so I won't hear anything on that for a while.

Well, I think that's it. I'll keep you all posted.


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04/25/06

David has to have another surgery :'(

Tomorrow at about 10am (about? Javier wasn't sure) they will be performing surgery on David's intestine. Today they did another xray on him and discovered the reason he wasn't able to have bowel movements. I guess there's a blockage of some sort? I have not talked to the doctor about this, Javier just called me to tell me.....


The good news is, David's already on the vent so it's not going to affect him this way.

Please say a prayer for us. I'll update when I have more information.


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04/26/06

Update on David's surgery

There's good news, and there's bad news.

The good news is David pulled through the surgery fine. There were no blockages in his stomach, other than a small band of scar tissue that she cut away but said that probably didn't have anything to do with his digestive issues. He's got an incision going horizontally across his lower abdomen.

The bad news is they didn't find anything. So we still don't know what is wrong with his tummy. We still don't know why he can't have a bowel movement. So basically there was no reason to cut him open and now he's going to have another scar.

Anyways, we're headed back up there now but I thought I'd give you all an update.

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PM update - David is satting REALLY good....like 98-99, on the same O2 settings as before, when he normally sats at like 88-89 on those settings. His heartrate is really high, though...it was 208 when I walked in...after about an hour it had gone down to about 160. Normally his heartrate is about 115-120. I think he may have been in pain, so they upped his pain meds again.

Pictures of my little man:



Where's David??



Before surgery


He's in there somewhere...promise!!


After surgery


He's awake!!!



His incision




OK - my MIL left on Monday afternoon....she's back in Miami! I'm gonna miss her beans :'(

Here are the pictures of her that Javier took:



Those are Javier's feet...he's silly



Awwwww sweet pictures of both of them




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04/30/06
Not much to update...

David had a really good night last night and day so far, according to the nurse. They have had to put his vent up to a rate of 36 (breaths per minute), but the doctor said it wasn't because his lungs were any worse. He said something about the extra calories (from TPN - no food yet) causing more stress on the body, and he needs the extra breaths to blow off the carbon dioxide. And the nurse made a good point - when he's off the vent he breathes about 60+ breaths per minute, so 36 isn't that bad, really.

David has a new device that allows the nurses and doctors to know how awake he is. They use them alot in surgeries. Since David is on Norcuron (the paralytic) it's hard to tell whether or not he is awake - he won't move either way. So this thing goes on his forehead and reads his brain waves. It's pretty interesting, actually. The doctor wants to see his BIS (I think that's abbreviated right - it might be BIZ?) in the forties. When I talk to him, though, it goes up to the eighties....which means he's waking up. Last night I was trying to take a picture of his new device and the flash caused his BIS to go up to 81, and the alarms went off. Oops. I left the camera at the hospital last night so I'll post those pictures soon.

Let's see, what else. Hopefully they'll try feeding David again in the next few days. They still don't know why his tummy isn't working. It's so frustrating. He needs that nutrition. TPN is bad for the liver over long periods of time, but he also has to have calories to build lung tissue. He's growing, though!! He's 26 inches long now, and he's up to eighteen pounds!! Some of that might be water retention, though, since he's gaining weight kind of rapidly for not eating.

Javier has a cold, so he can't go up to see David. He's dissapointed. He told me last night that he didn't realize how much he enjoyed going to see David until he couldn't anymore. This coming from the man who used to say there wasn't anyone in the world who he'd stay at the hospital all day long with....fatherhood changes you, huh?

It's been three weeks now. I'm really starting to miss DAVID. This might not make sense, but I miss HIM. I miss playing with him, and cuddling with him, and kissing his little cheeks. I miss trying to make him smile, watching him stare at his hand, and comforting him when he cries. All he does at the hospital is lay there....that paralytic drug is awful (from a mommy's point of view) because it makes it impossible to interact with him. He can't even squeeze my hand. :(

Don't get me wrong. I still thank God EVERY single day that I have him. I'm forever grateful that I've been given a second chance. I'm just ready to make the most of that chance, and for now I'm kind of at a standstill.....


***********ironic that the title was "not much to update" and this was the longest update I've had in a while.....I guess there was more to talk about than I thought!!!**********

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