Tuesday, January 31, 2012

Another video from last night. This was his bubble bath in a wash bucket.


Monday, January 30, 2012


Monday (January 30)

I am in St. Louis with Silas and he is just doing awesome!  He weighs 3 pounds 4 ounces now.  And, here is some really cool news, he measured 16 1/4 inches long!  Last Monday night, he measured 15 1/4 inches long, so that means that he grew an inch this week!  One whole inch in a week!  I think that's awesome!  They measure him every Monday night and I was here for both of those measurements and watched the nurses do it.  They measured him three times last week and this week just to make sure that they were correct.  Our prayers are being answered and this baby is really growing now!  I am seeing so much progress and that just makes my heart sing. 

So after he was weighed tonight he had a bubble bath.  I think he liked it.  I know he smelled better afterwards.  There is nothing like the smell of a freshly bathed baby.  Up until this week his "baths" consisted of being wiped down with some special wet wipes.  Tonight was the first night that I had been here for a real bath with warm water and soap.  Here are some cute pictures from bathtime:



He is looking at the nurse.  I think he has had enough.  lol.

After his bath, I held him and he stuck his hand in his mouth and sucked on two fingers (sort of like a little blonde I used to know who now goes by the name Abby Kitley).  After a little bit of that he went to his thumb and decided to suck on that (just like Maleah Rose).  And then, he fell sound asleep.  He was one happy camper.

I have some super cute videos of bathtime but I can't get them to upload.  I will keep trying!!

Sunday, January 29, 2012

Sunday (January 29)

Okay, sorry I didn't update the blog all weekend.  Silas is doing great and there really hasn't been that much to report.  He weighs 3 pounds, 3 ounces now.  Woo hoo!!!  He has just been doing awesome since the blood transfusion a few days ago.  He is continuing to gain weight.  He hasn't been having any breathing issues or heartrate issues.  He is digesting his food just fine.  He is happy, alert, and content when he is awake and the rest of the time he is just a sleepy little man who is busy growing.  He is a long and lean growing machine.  He graduated to a larger size "snuggli" this weekend.  That is the blanket thing that he is always so cozily wrapped up in.  Other than that there is really nothing to report.  And that is a good thing.

Oh, and Silas turned 7 weeks old today!  Only 8 more weeks until his due date and his expected homecoming! 

Thursday, January 26, 2012

A Three Pounder!!

He weighs three pounds!  He weighs three pounds!!!  Silas finally made it to three pounds on Wednesday night.  I am so excited!  That is the good news.

Moving right along to the not-so-good-news, he started to have a lot of heartrate drops and desaturations today (a's and b's).  He hadn't been having any of these over the last several days so this had the nurses wondering what was going on with him.  They did some bloodwork and said that he doesn't have an infection and was very healthy.  But his red blood cell count was low again so he needed another blood transfusion.  They started that this afternoon and he will get the rest of it this evening.  I'm sure he will feel better when it's done but in the meantime he doesn't get fed.  He will only get fluids through an iv.  I'm sure he didn't like being poked again.  The poor little guy was probably getting used to not having any needles in him.  So by him not having any food for 24 hours leads me to believe that he could lose weight.  I am preparing myself for him to take a step back but hopefully he won't.  Also, the nurse said that his weight may be wacky over the next few days because the blood might "beef" him up with a big weight gain but then will lose some of it after a day or two.  So basically, I am going to completely ignore his weight for the next few days and hope that he is at least three pounds by Monday.  We shall see.

Other news that is a bummer:  the girls both have a slight cold.  It's mostly just some stuffiness at bedtime but I'm hoping that it doesn't get worse and that Jason and I don't get it.  We have to stay healthy!  I can't stand the thought of not getting to go to St. Louis to see my baby! 

Please continue to pray for Silas and also pray that we all stay well.  We appreciate all of your prayers so much!!

Tuesday, January 24, 2012

Tuesday (January 24)

TWO POUNDS, 15 OUNCES!!!  That's right, he is almost three pounds!!  I am super excited about that.  Can you tell? 



He is doing just awesome!  He has been digesting all of his food and breathing like a champ with the cannula.  Tonight I helped give him a bath, change his diaper, and take his temperature.  I had the nurse take our picture.  When I pick him up, I can just tell he weighs more.  And there is actually a little bit of puffiness to him and his belly is rounded, whereas before he looked as if his skin was glued to his bones and there was nothing in between. 

He likes his little purple pacifier and sometimes he can really get going on it.  The drawback is that he hasn't mastered his ability to suck and breathe at the same time.  Soo, if he does it for very long he usually has a heartrate drop and then they take it away from him.  But tonight after his bath he was trying so hard to get his hands in his mouth and instead he kept pulling his cannula out of his nose.  So I gave him the pacifier and he was so content.  But then his heartrate dropped after a few minutes and the paci had to go.  Oh well.  Here's a picture of him while he was happily getting some paci time:


This picture shows the green cannula that helps give him some air and the orange tube is the feeding tube that goes down his nose.  The tan patch on his cheek is just a thing that helps hold the cannula in place.  All of that has a ton of tape over it because he constantly trying to pull it all out.  The thing he is laying in is called a snuggli and it keeps him from rolling around and it keeps him sort of swaddled.  He likes the closeness of it.  I sort of wish they made them in adult sizes.  It looks pretty comfy.

Here are some pictures from yesterday.  He was so bright eyed and was busy looking around that I wanted to get a picture.  But he blinked every time from the darn flash.



In the background of this picture you can see a green leather couch and a curtain.  I can pull the curtain closed and then the couch makes into a bed.  It is pretty comfortable and I usually sleep good, despite the nurses coming and going.  With the curtain shut, I don't notice them.  I have a bathroom, shower, laundry facilities, kitchen, etc, just down the hall.  It is very nice. 

I forgot to mention that they moved him to a new room the other day.  He is now in room 42 of the Elephant Pod.  Before he was in room 2 in the Kangaroo Pod.  It is not really a step up or anything but they closed down the Kangaroo Pod because they were down to only 60 babies in the nicu.  He was the only baby left in that pod so they moved him.  There are four pods in the green nicu (which is the acute care nicu).  Each pod has about 11 private rooms.  There are also that many pods in the yellow nicu (which is the "feeders and growers" nicu).  We are hoping to get there soon.  The nicu usually has at least 75 babies in it but can hold over 100, counting the multiples rooms.  Anyway, the move worked out great for us because they put Silas in a room that is usually for twins.  That means that I have way more room in my part of the room.  I thought I was spoiled before in the little room but now I really am.  I have my bed, my recliner, my pump, my suitcase, a closet, shelfs, and lots of space left.  This nicu has all private rooms.  Nobody has to share a room, unless it's with their siblings.  It is the largest, most advanced nicu in the midwest.  It is also the only one in it's care level that has all private rooms.  Most people from Flora aren't familiar with this hospital but it is the biggest and best around.  It is only about ten minutes or so past Children's/Barnes on I64.

Here are some pictures of our first room:


This is his shelf with all of his gifts on it.


This was his cute bulletin board that the nurses update everyday
with his weight.  One nurse was very creative!!

 
My couch was purple in this room and there wasn't as
much room between the couch and the curtain.


Today a therapist came by to teach me infant massage.  Silas decided he liked it and fell right asleep in my arms.  He is so sweet.

That is all for tonight.  Your prayers are working and Silas is growing!  Thank you!

Monday, January 23, 2012

Monday (January 23)

Everything has been going fine.  There really hasn't been much to report so I haven't blogged much.  Silas is doing good.

He was switching between the nasal cannula and the cpap every four hours.  Then he was doing so well that they started leaving him on the cannula for six hours and the cpap for four hours at a time.  Well, then he started having some heartrate drops, but only when he was on the cpap, which is more support than the cannula.  I think this was Silas' way of saying "enough is enough!"  So, now he is strictly on the nasal cannula and no more cpap machine!  Woo hoo!  He is doing so good without it too.

He is eating and digesting well.  He had his first eye exam today.  The doctor dilated his eyes and then checked his retinas with a bright light.  Premature babies can have a lot of eye problems due to the really fragile and immature blood vessels around their retinas.  The doctors keep an eye on this (pun intended, lol) and if there is any bleeding or other problems in the back of the eye they can do laser surgery to correct it.  Silas' eyes looked fine so far.  The doctor said the test will be repeated every two weeks, just to make sure. 

Silas is now six weeks old!  But in the nicu he goes by his gestational age, which is 31 weeks.  He still shouldn't even be born for another 9 weeks.  His weight tonight was 2 pounds 11 ounces.  He was 15 1/4 inches long.  He is growing but just slowly.  When I look at him I can tell that he is a lot bigger, especially compared to when he got down to 1 pound 9 ounces.  It feels good to see some progress.

Other than that, there is not much to report.  I know there are a lot of people praying for him and that means so much to us.  Thank you!

Friday, January 20, 2012

Friday (January 20)

No news is good news, right?  Right!!  Silas is doing good.  There is really nothing to write about.  He is breathing great.  He is on the nasal cannula for four hour blocks, then the cpap for four hours, then back to the cannula, and so on.  He is digesting his food well.  Everything is fine.  They went up on his feeds today (from 7 1/2 ml to 8 ml every hour).  They want him to start growing more but he is sort of stuck right around 2 pounds 8 ounces and 2 pounds, 9 ounces.  He goes back and forth.  Remember that I said that he weighed 2 pounds, 11 ounces?  Well, he didn't.  Not really.  They determined that they had an error on his weight that day because the next day he was back to 2 pounds 8 ounces.  Boo.  Grow Silas Grow!!!

Wednesday, January 18, 2012

Wednesday (January 18)

Silas is still doing very well.  He had a good night last night and a good day today.  I stayed in the room with him on Monday night and Tuesday night and then came home today.  We had a lot of snuggle time.  When I held him today, he just stared at me and looked so happy that I was there.  Shortly after that, he found his thumb and sucked on it a little bit.  That made him extremely happy.  He looked very pleased with himself. 

He is still doing the cpap but they are alternating it with just a nasal cannula.  So, every four hours he gets to just wear a nasal cannula instead of the cpap on his face.  He looks so comfortable when he is wearing that.  He hasn't had any episodes of a's and b's and is breathing really good.  Other than that, he only has a feeding tube.  The iv is gone so really he is not hooked up to much at all.  Progress! 

A few days before Christmas, Silas had his picture taken with Santa.  A professional photographer with the not-for-profit group The Jeremy Project came and took pictures of all of the nicu babies with Santa.  I got the print in the mail today and I love this picture!! 


He was on the ventilator in that picture.  You can see it above him and then it goes down into his throat.  I was asked to post a picture of him with his cpap on too.  This is one of the only ones I have with him wearing it.  I guess I always try to snap a picture when I can see his face better and this thing covers up a lot of his face.  The white hat is part of the contraption and keeps the cpap velcroed so that it lays up against his nose.


Thanks for all the prayers!  They are working, so keep it up!!  We appreciate them all so much.

Monday, January 16, 2012

Monday (January 16)

Update to my update:  Silas is now 2 pounds, 11 ounces!!  They just weighed him...

I am back in St. Louis today and things are going good.  Silas is doing very well, according to his doctors. 

The ventilator is still out and he is doing great without it.  He goes back and forth now between the cpap and a nasal cannula.  That is a major step down from the ventilator and he is handling it like a pro.  He also got his iv out today!  Yay!  He is off of his antibiotics and iv fluids.  No more needles poking him in the hand.  He is getting all of his nutrition from breast milk and a little bit of extra protein from something they call "fortifier."  Apparently, after the first month, mother's milk has less protein in it than before.  Probably because most babies need less protein after the first month, but my baby still needs lots of it so they are giving him a little extra.

He is digesting his food much better this evening than he did this morning too.  They are doing another echocardiogram in the morning to check on that pda again.  When the doctor listened to his heart today he didn't even hear the murmur at all.  He said that it sort of comes and goes.  Sometimes he hears it and sometimes he doesn't.  He thinks the pda is small and because Silas is doing so much better they won't do anything else to close it.  If it is causing a problem closer to when he is age one year, then they might consider doing something.  It sounds to me like one big answered prayer though!  We were all praying for that problem to just go away and I'm pretty sure it did!  Praise God!

The doctor said the focus now is just to get him to start growing.  He is holding steady at 2 pounds, 8 ounces.  I think we will see a lot of growth this week.  I just have a feeling.

Here's a neat story:  Today, not long after I got to the hospital, the nurse opened up his his bed (the top raises up, so that we can get him out) and I started talking to Silas.  I was standing on one side of the bed and the nurse and respiratory therapist were standing on the other.  Silas was laying on his side, facing the nurse and therapist, who was putting his nasal cannula on him.  I was talking to him and he started searching for me.  He looked at the other women and knew that wasn't Mama.  So he practically rolled his whole body over, turned his head completely to his other side, and was then facing me.  He looked up at me like "Oh Mama!  There you are!"  He stared at me for several minutes.  Then I walked away to get a chair and he started to cry!  I moved my chair closer so that the nurse could hand him to me and then I held him for an hour and we tried to snuggle.  He wasn't into that today.  All he wanted to do was root around on my chest like a little piggy.  He tried to suck his thumb but he couldn't get it to stay in there.  I gave him his little bitty pacifier and he sucked on that some but he was such a wiggle worm.  He just couldn't hold still.  He finally managed get into a sideways position (instead of belly down) and then he just wanted to look at me.  Seeing me kept him settled for a little bit but then he got all squirmy again.  Soon, it was time for him to go back to his bed and that made him mad.  He just wants his Mama I think.

And finally, some new pics!!

I think the nurse's hands put how little he is into perspective.

He is yawning, not screaming.

"Oh no!  Another picture!?"

This was taken right after the ventilator came off on Saturday.

Saturday, January 14, 2012

Saturday (January 14)

We went to St. Louis today and saw Silas.  Me, Jason, and my Mom and my Dad all went.  We had a really good day and so did Silas.

I held him for about an hour and he kept his eyes open for a long time and looked at me and listened to me talk.  He was so sweet!  But he really really wanted his ventilator out.  He kept moving his mouth around like he was trying to hack it out.  After we laid him back in his bed he kept trying to grab the tube with his hand and pull it out.  He got really mad and his heartrate kept going up.  The doctor came in right after that and said that they had decided to take the ventilator out today!  We were all very happy to see it go.  The nurse took it right out and Silas settled down pretty quick.  He looked so content!  He fell into a nice deep sleep.  I was so happy for him.

His weight is holding steady right around 2 pounds 8 ounces.  He has been eating good and digesting everything.  He looks better and I love seeing him alert and happy.  I had to come back home tonight but I will be going back again on Monday. 

Friday, January 13, 2012

Friday the 13th

Okay, it is Friday the 13th.  This may be a bad day for some but it has always been an awesome day for me.  Here's why:  Jason was born on a Friday the 13th and they named him Jason!  Good thing he was born before the movie came out, huh?  Also, our first date was on Friday, March 13, 1998.  I kept thinking to myself "Why am I going on a date with a guy named Jason on Friday the 13th?"  Haha.  Anyway, it all worked out wonderfully.  So it is no big surprise to me that I got really good news about Silas today on Friday the 13th!

Silas is smiling!  This was taken a couple of weeks ago by one of the nurses.


He now weighs 2 pounds 8 ounces!  That is two and a half pounds now, people!  Yay!!  We have all been praying for growth and progress and there it is!  God is good.  Also, I talked to the nurse today and she said that she had to talk to the doctor because Silas keeps trying to pull the ventilator out of his throat.  He is feisty!  It is amazing to me that he is so tiny but yet is coordinated enough to get a hold of that tube and he tries to pull on it.  He is strong, I'm tellin' ya.  I think he gets that from his Dad.  I probably don't have enough coordination to do that as an adult, let alone when I was a baby.  lol.  So, they are going to give him a little bit of a steroid today to help his lungs and they are planning to take the ventilator out this weekend before that kid yanks it out himself.  God made him a fighter because He knew he needed to be. 

He is doing great with all of his feedings, which are all still through the feeding tube, but he is digesting all of it very well, which is a big deal when they are that early.  Up until yesterday, he had been getting iv fluids and extra nutrition through his iv.  They took him off of that and he is now getting all of his nutrition from the breast milk in the feeding tube.  He will be done with the antibiotic for the staph infection in three more days and then his iv can come out of his little hand.  So hopefully by the end of the weekend, he will be without the vent and the iv, which is a big step in the right direction.  He won't be hooked up to near as much stuff.  He is going to love that.

I can't wait to see him tomorrow.  I've missed my little man!!!

Oh, and I took Carissa back to the doctor today and he said that she just sprained her leg and that it is not broken, for sure.  Whew.  She still walks funny and complains some but hopefully each day will get better for her.

Maleah is on a long weekend from school and she couldn't be happier.  She baked cookies with Grandma Debby today and is one content little kid. 

Have a great weekend everybody!

Wednesday, January 11, 2012

Wednesday (January 11)

Happy one month birthday to our baby boy Silas!  He had a good birthday and hung out with his mama for the day.  I held him for awhile and we chatted off and on throughout the day.  He likes to cuddle.  Today they lowered the settings on the ventilator which means he is doing more of the work himself.  He had an ultrasound of his head to check for brain bleeds.  They do this on all preemies his size at age one week, and at age one month, and then maybe a few more times before they go home.  On the one he had done at age one week, it showed a few enlarged ventricles but no brain bleeds.  On the one he had today, it showed that the ventricles were not enlarged any more and that there were no brain bleeds.  That made me very happy.  Typically, most babies who have a brain bleed, have it in their first week of life. 




Silas on his one month birthday!

The other thing that the doctor told me today is that Silas has a hernia.  Again, they said that almost every single little boy who is born as early as he was has this happen.  His intestines are sliding down into his scrotum.  He is so going to hate me for telling you all this one day.  It is a large hernia and it will have to be surgically fixed.  They will most likely do this right before he goes home (which will probably be in March).  They said that it is a common surgery and most likely he won't have to be put under.  They will probably use a type of pain blocker that will make him numb from the waist down.  They will probably do his circumcision on the same day.  They made it sound like it was no big deal of course!  Because they make everything sound like that.  Which is a good thing I guess but when it is your son it seems like a pretty big deal.

I came home tonight and beat the weather winter here.  Maleah is hoping and praying for a snow day tomorrow.  I think she will probably be disappointed.  Carissa is still not walking right on her leg and complained about it a couple of times today.  What to do?  What to do?  Take her back to the doctor or let it go? 

Well, I am exhausted and headed to bed.  Good night!

Tuesday, January 10, 2012

Tuesday Night (January 10)

"You take the good, you take the bad, you take it all, and there you have the facts of life!  It's the facts of life!"  Anybody remember that show?  That was theme song to the Facts of Life.  Tonight, I have good news and bad news.

We're going to start with the good news (because I want to).  The good news is that they did another echocardiogram on his heart this morning and it showed that the pda was "small."  I haven't gotten to talk to the doctor about it yet, but I think what he said last time was that if it would become smaller that they would not do surgery.  So I am hoping that this means that it will soon close completely and that we can move on past that issue. 

So on to the bad news:  He does have the infection around the tube in his throat.  They caught it early and he is showing no signs of illness.  His labs and vitals look great.  The doctors and nurses keep telling me how normal it is for a baby with a ventilator to get a little infection like that.  They will have him on antibiotics for 1 week and then it should be gone and he will likely have the vent out by then so hopefully it will not return.  They also found out today that he has a MRSA infection too.  This was found in his nasal cavity.  They said that he is a carrier only and is not sick from it.  They highly doubt that he will get sick from it.  MRSA is a type of staph infection and a large percentage of the general public are carriers and do not even know it.  He got it from somebody.  It could have been me or Jason or who knows who.  If it was me or Jason we had no idea that we could even have it.  It is a bacteria that lives in people's noses or skin.  So while he has it, everybody that comes in the room (except me) wears a yellow gown and gloves.  Each night for the next ten nights, they will give Silas a special bath to kill any MRSA on his skin, and they will rub special medicine on his nose.  And that's it.  It sounded scary to me at first but the nurses act like it is no big deal.  They act like that about everything though.  They keep telling me that Silas is a perfectly normal 25 weeker and to be patient and we will start seeing progress in a few more weeks. 

I skyped with the girls tonight from Silas' hospital room and the girls and Grandma got to watch the nurse give him a bath.  I love Skype.  Carissa said her leg didn't hurt at all today.  Maleah said she had a good day so all is well back at home.  Good night from St. Louis!

Monday, January 9, 2012

Monday Night (December 9)

Silas is still doing about the same as earlier today (see today's first post).  The nurse said this afternoon that he was "feisty" and "adorable."  I love that combination.  She said he was doing good on the vent and was digesting his food pretty good.  She said that they had taken a sample of some secretions around his vent to the lab to check for infection.  They would let it set for a couple of days and see if anything grew.  Other than that there really wasn't much else to report.

Then this evening, somehow I missed a call from the doctor on my cell phone.  I had been cleaning house tonight and trying to get everything in order so that I can leave to go back to St. Louis in the morning.  Our friend Calli came over to help me and it must have been while she was vacuuming.   Anyway, when I saw I had a missed call from the nicu I panicked and called them right back.  The doctor said everything was fine but that she had just called me to say that the lab had already contacted them to let them know that some bacteria was already growing from the sample of the secretions.  So, that is a bummer.  They are starting him on antibiotics and told me not to worry.  She said almost every baby that has a ventilator ends up on antibiotics.  She made it sound like it was an everyday thing and that the medicine would take care of it.  So, I am not freaking out.  But please pray that this infection does not turn into a big deal and that it goes away.  Quickly.  The doctor said that Silas does not act sick and that all of his vital signs and everything else look great. 

In Carissa news:  she only complained twice today about her leg and she is walking fine.  Also, Calli taught her to say "whew!" and wipe her brow after she does something tiring.  So tonight after she walked up the basement steps, she said "Whew!" and wiped her brow as if she had just ran a marathon.

In Maleah news:  She has had two little warts pop up on her hand, in between her thumb and forefinger, over the past few weeks.  We bought some Freeze Away tonight at Walmart to treat them.  Oh.  My.  Gosh.  Talk about drama!  We had to hold the stuff on there for ten seconds.  She screamed bloody murder and cried as if we were cutting off her fingers.  I felt really bad for her but it had to be done.  Calli helped and was the one that held it on there.  Good thing there were two of us because I don't think I could have done it by myself.  So she had a very painful 10 seconds and that was it.  Whew!  I think I wiped my brow when that was done.

Monday morning (December 9)

Yesterday afternoon, Jason and I received a call from Silas' doctor who said that he had to put Silas back on the ventilator.  Apparently, Silas had begun having a lot of a and b episodes.  So many, in fact, that the nurse was unable to leave his side.  He just wasn't breathing.  He was worn out and tired from doing all the work himself.  The doctors and nurses assure me that this is very normal for a baby his size to have to go back on it.  He is just too small to do all of that work by himself for very long.  Breathing was a lot of work for him because of the pda. 

After the ventilator was back in, the doctor said that Silas was much more comfortable and was in a very nice deep sleep and getting a lot of rest - which was exactly what he needed to do.  They do not anticipate him being on the ventilator for very long.  They think that he will get his strength back and then be ready to do the work himself again. 

They are doing another echocardiogram today on his heart.  It should tell them if the medicine that they gave him over the weekend for the pda helped or not.  I am not a doctor but I am guessing that it did not help since he is back on the ventilator.  I could be wrong so we shall see. 

Please keep praying that our little man starts improving and growing.  Thank you all.

Saturday, January 7, 2012

Saturday Night (January 7)

Jason and I went to see our little man today.  He looked good and had a pretty good day.  They had started his feedings up again last night.  He hadn't digested his food very well overnight but was doing considerably better today.  He had just a few episodes of a's and b's but not very many at all and the doctor was happy with that.  All preemies his size have some episodes.  Just as long as he is not having a lot of them the doctor isn't worried. 

He still isn't on any extra oxygen and only gets the same amount that you and I breathe but he is still wearing the cpap that gives him a little extra pressure in his lungs to make it easier for him to breathe.  This morning they gave him another echocardiogram to see if his pda had gotten bigger again after his blood transfusion yesterday.  I asked the nurse if she could hear a murmur and I think her exact quote was that he has a "whoppin' big murmur."  That is what I was afraid of.  We waited this afternoon for the doctor to come in and explain the plan to us now that the pda was back.

While we were waiting Jason got to hold Silas for an hour. This was the first time he held him because it didn't work out for him to do it last weekend after all. Silas was very comfy snuggled up next to Daddy and made a bunch of funny little sounds while he sat with Daddy. Here are some pics of that: 





So late this afternoon the doctor came in to talk to us.  The echocardiogram showed that the pda is large again.  Even though it is large, Silas is doing very well.  This is a very good thing.  However, if he starts having a lot of a and b episodes, requires more oxygen, or needs the ventilator they will probably do surgery to fix it.  The doctor decided to do one more round of medicine to try to close it.  This time he is treating it with a slightly different medicine that some babies respond to that didn't respond to earlier rounds of endocin.  Please pray very hard that this works!  If it doesn't work, there is a chance that he will need the surgery.  Right now the doctor is saying that it is a 50/50 chance that he will need the surgery.  He will do another echocardiogram on Monday to see if the medicine worked this time. 

I have been very worried that he will need the surgery but the doctor made me feel a little better about it today.  First of all, the pda is not actually in his heart.  It is in his chest, between his lungs and his heart (it's job is to keep blood away from the lungs in utero, but then it is supposed to close off at birth so that blood can go to the lungs so the baby can breathe out of utero.  Sometimes in preemies it just doesn't close like it should.)  It will not be considered open heart surgery and it requires a very small little incision.  The babies that have the surgery do well.  The downside is that the babies do not immediately do well.  It usually sets them back one week to 10 days.  He would be back on the ventilator for a while but eventually he would be doing much better.  The thought of them doing even a small surgery on my itty bitty 2 pound baby terrifies me and Jason.  The doctor is hoping that the medicine works too and that even if it doesn't that Silas can tolerate having the pda until he is a little bit bigger.  So tonight I am asking that you pray that Silas does not need the surgery and that this round of medicine does the trick.  God has heard all of our prayers so far and I am confident that He will see us through this. 

Oh, and in Carissa news:  She walked a lot better on her leg today.  She complained this morning that it hurt but the rest of the day she said it didn't.  She did limp most of the day though. 

Friday, January 6, 2012

Friday night (January 6)

Sorry for the lack of an update yesterday but I haven't had a second to do it.  I am a busy woman, let me tell ya. 

When I left Silas on Thursday night, he was doing really good.  The pda was still there but very small.  Everything was going just fine.  I guess right after I left though things started going south.  He had a lot of a's and b's that night (stopping breathing, heartrate drops).  His color wasn't looking that great either.  The doctors decided to do some bloodwork on him to see what was going on and they decided that he really needed another blood transfusion because he just didn't have enough red blood cells.  This is the third time that he has needed a transfusion.  The reason is that his little body just can't make the cells fast enough to keep up with his needs, plus the nurses are always taking a little blood here and there for tests everyday and that doesn't help at all.  The down side of getting another transfusion is that all of the extra fluid in his heart can cause the pda to get big again.  The doctors decided that the benefits of the blood far outweighed the risks.  So, he received the blood this evening and the nurse said that he is looking and acting much much better.

He had a significantly better day today for several reasons.  They upped the pressure and the amount of help that he is getting on the cpap machine, they stopped his feeds, and they gave him the blood.  The nurse said that all of this is very very normal for a preemie his size.  She said that him having the a and b episodes the night before was just his way of communicating that he just wasn't ready to do all of that on his own yet.  He got tired of trying to work hard to breathe and digest food all at the same time and needed a little more help.  I'm glad he's feeling better and I'm praying that his pda does not get large again and that we can move on from that issue.  I am also praying that he continues to feel good and does not have to go back on the ventilator, which is a risk if that pda gets big again.  He has lost a couple of ounces and was down to 2 pounds 3 ounces.

In other family news, I had to take Carissa to the doctor today because I thought she broke her leg.  She was running and playing in the front yard and her foot went into a little hole and down she went.  As soon as she cried I could tell it was a real hurt.  She usually doesn't cry much and she just jumps back up after a fall - usually.  This was different and she just laid there until I scooped her up.  We were getting ready to leave so I put her in her carseat and put a new movie on for her and she seemed fine.  Then we went to Maleah's school to pick her up and Carissa wouldn't walk on her leg.  She kept saying that her foot hurt.  I had my friend Deb take a look at her foot and she thought it looked fine and the school nurse even took a look at it while we were there.  We all thought her foot looked fine - other then some ink where she had scribbled on it earlier with an ink pen while I wasn't looking.  I hadn't washed it off yet and was planning to at bathtime.  If I had known then that so many people would see that scribbled on foot today I would have washed it off when I had the chance.  Oh well.  Then we came back home and I carried her in and put her on the couch to watch tv.  I thought she would rest a little bit and would probably be up and running in no time.  Well, as time went by, she would only crawl all over the house and would not walk on it at all.  Since I really didn't want to end up in the emergency room I decided to bite the bullet and call the doctor.  They fit me in at 4:15 on a Friday.  I was so thankful!  The doctor immediately figured out that it was her leg and not her foot.  No wonder her foot looked fine!  I kind of felt like a dummy but if this ever happens again I guess I'll know what to look for.  He sent us over to the hospital for x-rays and there did not appear to be any broken bones.  But she still can't walk on it very well at all.  I brought her home and gave her some ibuprofen and eventually she started sort of hobbling along on it but she has a major limp and says "ow, ow, ow!" a lot when she walks.  The doctor said that if she is still doing that by Wednesday to bring her back in for more x-rays because sometimes when kids her age break a bone it doesn't show up on the x-ray immediately.  I really hope that she feels much better tomorrow and that it doesn't hurt her.  Poor thing!  She is not a complainer and is a pretty tough little cookie so if she says "ow!" I know it hurts.

Well, now I am going to go to bed and I am seriously hoping that tomorrow is a little calmer.  Or a lot calmer.

Wednesday, January 4, 2012

Wednesday (January 4)

My big boy is up to 2 pounds 5 ounces!!  How about that?  Pretty cool, huh?  I was worried that he wouldn't gain weight this week since they were withholding feedings due to treating the pda (if you didn't read the last update, go back and read that one and it explains pda).  The nurses explained that he still gets all of the calories and other things he needs to grow in his iv but still... I was worried.  It didn't matter at all and he still gained weight!  That's the good news.

The other news is that the darn pda is still open even after the last treatment.  His heart murmur is still very loud.  A decision will be made tomorrow about what to do about it.  In the meantime, they are still withholding food.  Before the treatment his pda was considered "large."  After the last echocardiogram they are classifying it as "small to moderate."  I am anxious to hear what the plan is for that thing to finally close. 

Other than that, there's nothing new going on with him.  Tonight I helped give him a bath, change his diaper, and took his temperature.  The nurse changed his sheets and weighed him.  And then after that, I held him for a long time.  He was super comfy, all snuggled into my chest and tucked into my tank top.  They call this a "kangaroo hold" and he loves it.  We snuggle and visit while we sit there.  I love holding him and smelling his little head.  But eventually he had to go back in his bed, mainly because I was about to pee my pants and I desperately needed to pump breastmilk.  Holding him like that triggers my body to make loads of milk.  So, he went back to his bed and he was MAD!!!  He didn't want to go back and he cried and even once let out a pretty good little scream that reminded me all too much of Maleah.  His heart rate shot up and it took the nurse and I several minutes to calm him down.  So it looks like he has a bit of a temper...

I am staying in his room tonight instead of at the Ronald McDonald House.  Because I am here alone this time, I figure it will be easier to just stay here.  There is a nice long couch that folds into a bed and a recliner.  Down the hall is a parent's lounge that has a shower, laundry facilities, kitchen, etc.  So really, I'm all set.  Plus this way, my Mom doesn't have to worry about me walking to my car all alone in the dark parking garage in the middle of this big city.

Tuesday, January 3, 2012

Tuesday, January 3

Silas is still doing good.  He has had another setback though.  The valve in his heart, called the pda, that they closed last week with medicine, opened back up and caused him to have a heart murmur again.  They are giving him another three day treatment of medicine to close it.  It has to close because with it open it makes it much harder for him to breathe.  They have not put the ventilator back in but the cpap is now giving him some extra breaths.  He is not doing as much of the work himself as he was a few days ago.  Hopefully the darn thing stays closed this time so that he can keep breathing by himself.  Also, while they treat the pda, they take away feedings.  All he is getting is just what is in his iv.  It's hard to gain weight when you don't eat.  Here is a link that helps explain the pda a little better in case you're interested:  http://preemies.about.com/od/preemiehealthproblems/f/What-Is-A-Patent-Ductus-Arteriosus-Pda.htm

Other than all of that, he is doing good.  I held him for over an hour yesterday.  He was very cozy and smiled a few times while I was holding him.  He is such a sweetie...

Sunday, January 1, 2012

Sunday, January 1, 2012 Happy New Year!

Happy New Year everyone! 

Silas had a great night last night.  He didn't have any episodes where he forgets to take a breath.  They call these episodes the a's and b's.  A for apnea and B for bradycardia.  He sometimes forgets to breathe and then his heart rate drops for a second.  It is because the part of his brain that controls breathing is immature.  He will grow out of it.  In the meantime, it is scary for me but completely normal for a 25 weeker.  The nurses and doctors are not phased at all by it.  Anyway, so he was breathing good last night and digested all of his food.  The nurse bathed him and washed his hair and then changed his sheets.  After that he was all tucked into his bed and was sleeping really good when I called.  He also gained weight and was at 2 pounds 2 ounces when she weighed him at bathtime. 

He turned three weeks old today.  Today when I talked to the nurse, he wasn't having that awesome of a day.  He had several episodes of a's and b's today so they started giving him a little bit more air on the cpap machine.  I am thankful that they didn't have to put the ventilator back in.  They also had to take out his pic line (the main iv line that was in his arm) because it had a little bit of drainage around it.  They do not want it to get infected so that came out and a regular type of iv was put into his hand.  Please pray that he does not get an infection of any kind.  He also wasn't digesting that well today either.  Most of the food that they have given him just sits in his stomach and isn't going all the way through.  The doctors say that is very typical because his digestive system is still so immature.  They say he will grow out of that too. 

I called again this evening and he had had only one episode of a's and b's since they increased his air flow.  That is much better.  Hopefully tomorrow he will start digesting some more of the breast milk and gain some more weight. 

Thanks for the prayers and keep them coming!  I am amazed at how many states are represented in the prayer chains for Silas and our family.  It really leaves me speechless...