Thursday, December 31, 2009

Naughty Little Boy!!!

So, I am sitting here just about to get ready to go see the boys and I get a phone call from the hospital.  The doctor sounds a little frantic and says she wants to give me an update.  Oh God!  My heart jumps!!  She says, "Well, Sean extubated himself this morning.  We didn't reintubate him.  We decided to see how he does on SiPAP since the steroids seem to be helping him so much.  I guess he didn't like the ventilator anymore." 



Wednesday, December 30, 2009

I am becoming white trash . . .

Well, it's offical . . . I will be white trash.  Bubba's dad delivered his trailer to the hospital's trailer parking.  Shortly, I will be moving into the trailer.  I will try to stay there a few days, come home, do laundry, sleep in my own bed, etc.  Anyone hear banjos playing in the background???

Sean (or as his primary nurse calls him: Seanie) has started a course of steroids to try to get him off the high frequency vent.  He was doing really well on the vent and they were turning it down, but then in the last two days, they have had to increase his settings.  He will take the steroids for about a week, including him being tapered off them.  Sean is now eating a little over 2 teaspoons (11ml) every 3 hours and weighs 1lb 11oz!!

Colton is being an active little boy.  He is a wiggle worm!!  He is always moving when we visit.  He is doing well on his CPAP.  He weighs 2lb 8oz. which is 1130 grams.  When he's 1200 grams we will get to hold him (  I can't wait!!!!!!  The neurosurgeon came and saw his little head.  It doesn't appear his temporary shunt is working very well.  But, when the shunt was put in, a little port was placed under his skin.  So the neurosurgeon is able to access the port and draw some fluid out of the shunt.  So, day before yesterday, the neurosurgeon had to draw some fluid.  Little piggy is eating almost 5 teaspoons (24 ml) of milk every 3 hours.  Because they want him to grow, the milk he is getting is fortified - making it more calories than regular breastmilk.

How is mommie doing?  I am TIRED!!  Yesterday I went to see them twice - once in the morning to deliver breastmilk and once to visit the boys after Bubba got off work.  That's a short 6 hours in the car!!  Today, I have been getting some stuff down around the house.  Unfortunately, I think I over did it.  I'm sore!!   I need to take it easy . . . easier said than done . . .

Sunday, December 27, 2009

Sunday Surprise :)

Just received a call from the boys' neonatologist.  Colton is off the ventilator! :)  He is on CPAP and so far, holding his own.  There is a concern that he will have to go back on the vent, but this is definatley a step in the right direction.

Poor Bubba is currenly fighting with the hot water heater.  Once he's done, we will be bale to go see the boys.  After the visit, we will then climb into Tahoe traffic.  It's going to stink coming home.  But, seeing the boys will be worth it! :)

Weekend Update

Of course, Bubba and I went and saw the boys on Christmas and yesterday afternoon. Both days the boys had visitors.  Their Grandpa Ray visited them on Christmas Day.  Yesterday, their Aunt Merrilyn and Great Grandma Mary visited them.

Both boys are doing well.  No issues to really talk about.  The neonatologist does want to get them off the ventilators since they are almost 4 weeks old.  If babies aren't off by 4 weeks of age, they are given a course of steroids to help their lungs.  So, the boys need to make some great strides this week to avoid the steroids. 

The boys did mess with Mommy and the nurses yesterday.  I was sitting next to Colton pumping when Sean's monitors went off.  Of course, his nurse responded.  The Colton's monitors went off.  His nurse responded.  Guess who's monitors went off again???  Yes, Sean's!!!  Then Colton's AGAIN!!! 

On the way home from visiting the boys, Bubba and I stopped at Lowe's.  We bought a new hot water heater.  Ours isn't completely out, but it's heading there.  I think we can take about a 6 minute shower before the hot water runs out.  Lucky Bubba gets to find the time to put it in!!  LOL!

Thursday, December 24, 2009

Colton's Surgery

Colton had his surgery yesterday morning.  We arrived at the hospital at about 9 am.  Neonatologist, neurosurgeon and anesthesiologist came in to see him shortly after we arrived.  We talked about the procedure and what concerns each one of them had about doing it.  Part of the concern was that he had to be transported from the Women and Children's Center to the Main Hospital since that's where the OR is.  The nurse was telling me that someone measured it and it's a quarter of a mile walk!

Colton was taken to the OR at about 1030 am and was back in his NICU bed right afternoon.  The procedure only took about 30 minutes of that time.  The neurosurgeon and anesthesiologist both said he did well during the procedure and to expect him to be sedated for a few days.  They explained that it takes awhile for their little systems to clear all the anesthesia out.  When we walked in, little Colton had his eyes open and he was looking around!  Of course, you could tell he was tired, but he kept opening his eyes and looking around, then he's close them for a few seconds and then he'd open them up and look around again!

Bubba and I left the NICU to get some lunch and make a few phone calls and send a few texts.  When we got back to the NICU, little Colton was again looking around!!!  I told the nurse he might need some sedation so he can get some rest!! 

Bubba says he's happy now because if the boys are identical (no, we don't know if they are or aren't - we might have to do DNA testing) he can now tell them apart!  Colton will have a C-shaped scar on his head!  Such the joker!!  I just think Colton won't want to shave his head when he's older.   Although, he could come up with a really good story about how he got the scar . . . maybe a skateboarding accident . . .

Bubba and I spent time with the boys today.  Colton is doing well.  He is alert and awake quite a bit.  He needs to be resting though.  Little preemie brains grow while they are sleeping.  Sean is hanging out on his hig frequency vent.  Gosh, I wish he'd do well enough to get off of it.  Because of the vent, he can only lay in certain positions.  Those positions are giving him a "toaster head." 

Hard to believe that tomorrow is Christmas!!  The boys will be 29 weeks tomorrow.  Yes, they are 3 weeks old, but in NICU-land they are considered 29 weekers.  Sometimes it seems like the events of the night they were born seem like they were so long ago . . . other times, it seems like it was just yesterday.  One day, I will tell you all the story of their birth. 

Today, when Bubba and I got home, we found there were gifts for the boys.  They each got a Tickle Me Elmo (from their Grandma), some handmade Christmas ornaments, and some Christmas cards.  :)

Merry Christmas Everyone!  Hope everyone has a wonderful holiday and has a great time with friends and family.  Bubba and I will be visiting the boys and having dinner at Chevy's (yes, they are open on Christmas Day!).

Tuesday, December 22, 2009

Poor Little Colton . . .

This poor little guy is having a rough time.  He now has pneumonia.  And, tomorrow morning he is having surgery.  He will be having a shunt placed.  :(

I really am at a loss for words . . .


Monday, December 21, 2009

A little update . . .

Sean seems to be stable on his new hig frequency vent.  They are weaning his oxygen down. :)

Colton is a different story.  :(  His heart murmur is back.  If it's a PDA, he's already had two rounds of medicine to try to fix it.  They usually won't do three doses so he would most likely need surgery.  But, this isn't the worst of it.  His brain still isn't draining fluid like it should - he has hydrocephalus.  :(  The neurosurgeon says he will most likely have to place a shunt in his brain before Christmas.  Also, there is some discussion as to if he has an infection or not.  The reason for this is that there was blood in the lumbar puncture sample (because of the brain bleed) so it throws all the numbers out of whack.  In any case, he is on two antibiotics.   I cry all the time about Colton.  I can tell he doesn't feel good but I can't do anything to fix it. 


Sunday, December 20, 2009

Sean - one day old

Hanging out on the vent . . .

Colton Picture - one day old

Colton hanging out under the bili lights (hence the eye covers)

Sean Picture

Sean and Daddy's finger

Colton Picture

Colton and Daddy's hand

Another Day in the NICU

First, a lot of people have asked for pictures.  I need to find my cable to download the pics off my camera.  Sadly, findly the cord is lower on the to-do list than things like laundry and grocery shopping.  I promise I will have pictures up soon.  Promise.

Sean had his ventilator changed today.  He just wasn't doing well on the vent, so he was changed to a high frequency vent.  It gives him 600 breaths a minute!!  It causes his little chest to vibrate.  The vibration is barely visible when he's laying on his tummy, but you can definatley feel it when you touch him.  The best part is that within about an hour on this vent, it was clear he was feeling better.  His labs were better and he was so awake and alert!!  He kept looking around.  He muct have been thinking, "Hey guys!  It's about time!  You should have put me on this two days ago when I started feeling bad!"  

Now, Colton still struggles.  Because of the bleed in Colton's brain, there is some fluid that's not allowed to drain properly.  So, the doctor decided to do a lumbar puncture (spinal tap) to get some of the fluid out of there and to see if he might have an infection.  Sadly, Colton does have an infection.  He is now on two antibiotics.  He had been very lethargic the past few days. This might be why.  As I said earlier today, he is back on the vent.  He is requiring more and more support from it - probably from the infection and brain bleed (although we think the brain bleed happened last week so it might be more from the infection).  The doctors are considering the high frequency vent for Colton too.  After seeing how well Sean responded on it, I wouldn't have any problem with Colton going on it.

While picking up some necessities tonight, I found little purple stockings to hang by the boys' isolettes.  I was hoping I'd find something super Christmasy, but they only had purple or pink in mini-stockings.  I thought I regular size stocking might be overkill.  I also got some scrapbooking paper and stickers to make crib cards for the boys.  Holy smokes!  I am so NOT crafty!!  I don't know how scrapbookers do it!!  I just don't know!  But, I did a decent job and starting tomorrow, their isolettes will also have card with their names and birthdate on them.

Off to bed . . .

Saturday, December 19, 2009

Quick update . . .

We got a call at 6 am.  Colton was having a hard time.  He is now back on the ventilator. :(

Friday, December 18, 2009

No better, no worse . . .

Bubba and I spent about 6 hours in the NICU today.  The boys are no better today.  Thankfully, they are no worse.  Here is what is going on . . .

Sean is requiring more help from the ventilator.  He should be requiring less.  The doctors don't know why this is happening.  :(  He is getting to eat very tiny amounts - 1 ml every 6 hours.  Gosh!  Don't overfeed the munchkin!!  :P  And, last night, he got his very first kiss from Mommy! :D

Colton is definately having a harder time.  He has suffered a bleed in his brain.  What does this mean?  There has been some bleeding in his ventricle (the area where spinal fluid is).  This bleeding can cause pressure on the brain.  Pressure on the brain is never a good thing. :(  So far, he is stable at this point.  He is eating very well - 6 ml every 3 hours - and he is doing well on his SiPAP (one of the nurses had told me it was CPAP, but he's actually on SiPAP).   He likes when the nurses give him a break from it.  He does well with the blow by oxygen and seems to like it when the nurses massage his little face where the SiPAP mask sits on his face.   Colton and I did reach a new milestone today - that little stinker peed on me while I changing his diaper!! 

So, as you can see, both boys are still in need of prayers.  And, I'd like to say, I know everyone is concerned.  Please understand if I don't return phone calls or text messages.  It's pretty difficult for me to talk about all of this (texting is much easier so it's probably the best way to contact me).

Off to try to get some sleep.  Tomorrow (opps!  today as it's after midnight!) Auntie Jen is going to take me to see them.  Bubba is going to go to work. 

Thursday, December 17, 2009

Prayers are Needed for the Boys

UGH!  I was warned that being in the NICU was a dance of two steps forward, one step back. 

Sean is being watched for a heart murmur.  He needed another blood tranfusion tonight.  But, he's actually doing better than his big brother.

Colton has encountered some complications.  :(  I'm not going to go into details, but this is very serious.  He definately needs prayers at this time. 

Off to try to get some sleep . . .

Tuesday, December 15, 2009

Don't Ignore Me! :)

Last night after Bubba got home from work, we went up to see the boys. I really don't like him working and me not being able to drive. I think I need to venture out in the car to see how I do driving. I'm not on any pain meds anymore. I just worry about being able to hit the break if something happens.

Colton is hanging out. He's a little puffy - I called him the Stay Puff Marshmellow Man! He got some lasix to get some fluid off of him. The nurses say this is totally normal. Their little systems can't regulate their electrolytes so they need some help here and there. He is tolerating the breastmilk and now getting 3 mls every 3 hours. Best part of the visit was when they were getting ready to close his isolette and the nurse says, "Give your boy a kiss!" Um, I can? So, I bent down and gave him a little kiss on his head. It was the first time I had gotten to kiss one of my boys!

Sean is hanging out and pooping up a storm! No breastmilk for him yet. Even though he is pooping, they are waiting for some of his xrays to look a little better. Nothing major, just being cautious. He is still on the vent. It's getting me worried that he's been back on it for so long. He seems very comfortable on it. Last night he was holding on to his tube while sleeping.  When not sleeping, he would look around like he was checking everything out.  Also, when the nurses were paying attention to the baby that was in the NICU and crying, Sean would drop his oxygen level just long enough for the nurse to come over to see what has going on.  As soon as she got to his bed, his level would come up.  I think he just wanted the attention!  Little stinker!

Never got the nap yesterday.  I don't think sleeping in the car on the way to the hospital counts.  Today, there will be no cleaning of the fridge.  Napping IS the priority! :)

Monday, December 14, 2009

Sean is feeling better

After Sean's little procedure on Saturday morning, he was actually able to poo.  He is feeling much better.  His belly doesn't look so uncomfortable anymore.  He is still on the vent.    Really, this munchkin is holding his own. 

Colton is hanging out on the CPAP.  He did need another blood transfusion though as he dropped his blood count.  Neonatologist said 26 weekers unsually need several transfusions before going home partially due to the fact that he is getting his blood drawn frequently.  A tranfusion for one of these little guys is 8 ml (less than 2 teaspoons!). 

Bubba had to go to work today.  That meant I've been at home waiting for him. :(  When he gets home, we willl have a quick dinner and then venture out into traffic to go see the boys.  What did I do while I was home?  Too much!!!!  And, I didn't get a nap in. :(  I think I should make a nap a priority tomorrow!

Friday, December 11, 2009

The Ups and Downs of the NICU

Sean had a rough night last night.  He had to be re-intubated.  He was just getting too tired on the SiPAP and needed a little more help.  Also, his morning labs showed some pretty significant anemia so he had to receive a blood transfusion.  His belly is still of concern. :(  Bubba and I talked to the neonatologist and the surgeon about the game plan.  In the morning, little Sean is going to have a little "procedure" to try to clean out his bowels.  I won't put the details here.  He does have some dignity!! 

Colton is cruising along on his CPAP.  He even got a little breastmilk lunch today.  It was his first meal! :)  He got one tiny little milliliter and then had to wait 6 hours for more.  Gosh!  Don't overfeed the poor kid!  Bubba did have a milestone today - he changed his very first baby diaper.  He got lucky though, it was only Colton's wet diaper.  Dang it, I got the poopy one!

While at the hospital, I noticed pain in my left leg. So, I headed over to the clinic to have it looked at.  Great!  I have a freaking blood clot!  As the doctor put it, it's not the big, scary blood clot that can go to my lungs and kill me.  It's just an annoying blood clot that I need to take some aspirin for.  Lucky me!  The doctor asked if I was there on the crazy night last week.  I told him that yeah, I was the crazy woman they sectioned in the middle of the night.  He laughed. 

The boys also had a visitor today. Their Grandma Carla came to see them.  Carla was Bubba's mom's best friend.  Carla definately gets to be a grandma to these little guys.  She will treat them as if they were her own.  Poor Carla was in tears almost the whole time she was visiting.  It's obvious, she just loves those little guys!

Thursday, December 10, 2009

They grow up so fast . . .

So, today when Bubba and I made our trek to the hospital, we arrived to some pretty good news about little Colton.  He is now off the ventilator and on CPAP (that same machine used for sleep apnea) and he has outgrown his blood pressure cuff.  His old cuff was about the size of a Band-Aid.  This new one is a little bigger.  Colton's nurse gave me the old cuff.  I will be sure to get a picture of it along with something else so you can see the comparison.

Now, it's only fair to let you know that little Mister Sean has been off the ventilator since Tuesday (the 8th).  He is such the over-achiever!  He is on SiPAP, which is a lot like CPAP (but I can't really tell you much more than that).  Our concern with Sean is that his bowels aren't working like they should.  He has a belly full of air and it just looks so uncomfortable. :( 

Of course, we will be going back to see them tomorrow.  It's Bubba's last day off work.  He returns to work on Monday.  This is really going to stink.  The boys will be 90 minutes away and I still can't drive.  Heck, I don't even see my doctor until January.  I won't be cleared to drive until then.  Hmmmm . . . who wants to bet I will be driving before then??  

Off to bed so I can get up bright and early to go see my boys . . .

Welcome to our blog!

I have set this blog up so that friends and family can keep updated on Colton and Sean.  Colton and Sean were born on Decemeber 4, 2009, at 26 weeks gestation (about 6 months).  The boys were born by emergency c-section in the middle of the night as mom's health was rapidly deteriorating. 

In the following days, posts will include the trials of getting pregnant (fertility treatments are FUN!), the short-lived pregnancy, the harrowing birth, and how the boys are doing as they grow in their incubators as the good people at Kaiser take care of them.  And, yes, pictures will be included! :)

And, because everyone wants the "stats:"

Colton Duayne, born 12/4/09 at 327 am, weighing 900 grams (1 lb, 15.8 oz), 14 inches

Sean Patrick, born 12/4/09 at 328 am, weighing 540 grams (1 lb, 3 oz), 12.5 inches