9/29: Learning, waiting, watching

"I made you and I will care for you"  - Isaiah 46:4

Here is my sweet little baby! He is so precious.  When we went in Tues morning they were taking him off the ventilator.  He looks very calm while resting and recovering from surgery.  We are really watching the spinal fluid and hydrocephalus.  If it does not appear to absorb itself Dr. Nagy will have to put in a shunt.  60-80% of SB needs them.  Dr. Nagy says it could take a day or two to know, or it could take weeks.  I am still praying we don't need one.  The bible verse above really says it all.  God is in control.  He will take care of our baby.  So many things have gone our way so far so I keep telling myself to hope for the best, but be prepared for it if it happens.  Toby's back looks better and better every time I see it.  He lays on his stomach and rests.  He had his first feeding today.  Right now we can't hold him so we turn him on his side and he lays there while eating.  The nurses are great and are working with Adam and I.  They are teaching us how to handle him and let us care for a lot of his needs ourselves.  We changed his diaper, took his temperature, doctored his umbilical chord, and fed him all on our own.  Around 6:00 we went and gave him his first bath.  He didn't get to have one yesterday.  He smells so good!  Adam and I are really working together.  It take both of us to feed him.  Can you imagine burping a baby laying on its side with a back injury?   Working as a team is really helping.  Dr. Nagy came in last night and looked at his head.  He predicts we will need a shunt, but it just might take awhile for the fluid to accumulate enough for us to know.  Please keep the situation in your prayers.  I am loving being a new mom.  It is hard of course but I have so much help and a good husband.  I'm dying to hold him of coarse, but I am still so thankful everything went good that I refuse to get upset about it.  We had a great day.  I pushed it a little bit so I stayed in all night.  Adam went down to the 2:00am feeding and he said Toby was doing great and eating great.  It has really not set in with me that the worst part of all of this is over.  I keep waiting for the bad news.  Thank you God for taking such good care of us!

9/28 - Happy Birthday Toby Lewis!

Today Toby was born and let me tell you he is perfect.  He is 6 lbs 4 oz, 19 inches, and arrived at 11:44.  He has dark hair and dark eyes.  He also has long eyelashes like Adam.  His birth went exactly as planned.  I was so nervous about the c-section but there was really nothing to it.  He came out with a good set of lungs too.  There really is no way to explain what it's like to become parents or hearing your baby cry for the first time.  I didn't get to hold him because your arms are tied down for the c-section, but they did get him bundled and let Adam hold him.  

It was a very long day.  Toby had his defect repaired.  He finally went back to surgery at 8:00pm and the doctors came out around 11:30pm.  Dr. Nagy was here neurosurgeon and there was also a plastic surgeon named Patricia Aldrige.  They both really complimented each other's work when they came out to let us know Toby's surgery went well.  This surgery was amazing to say the least.  I would not believe the before and after was the same baby if I had not witnessed it with my own eyes.  Dr. Nagy came in and told us that the surgery was a success.  They were able to use Toby's own skin, and did not have to cut skin off another place.  He said there was one nerve (controlling the left knee) that might not have made it, but the rest seemed good.  Toby made us proud by having several wet diapers too.  This was something we did not know would be able to happen or not.  He is also a feisty fellow and already strong. He lays on his belly and lifts his hiney up in the air using his legs.  He has really been showing us what he can do.  His nurses say he's doing his "booty bounce" but whatever you want to call it he is sure giving his parents more hope than ever.  There has been so much prayer surrounding this child.  We have really felt them.  I don't see how anyone can go through these things without a foundation in God.  When we pray for one another we take a piece of those worries away for our family in Christ.  There is not anything in this world bigger than God.  I just want to say thankyou to everyone for the love you have shown our son.  I can't wait until we are home and you can meet him.  

9/27 - The Night Before...

Okay so I'm not going to say much.  Yes we are nervous, anxious, excited, praying, wondering, curious....etc.  I just can't wait to see him.  We were both saying that it scares us too...not knowing what to expect with the defect.  I told Adam we would concentrate on his sweet little face :)  We went down to the NICU today.  Adam said it was a reality check.  I am just thankful that the nurses down there seem so amazing.  They have way more experience taking care of babies like ours than I do.  They showed me Toby's "little" room.  I say little because it is a very small little room with a sliding glass door.  Just big enough for his little bed and a couple of people.  They asked me his name and wrote it on the board in there, which made me feel like he was special :)  You get used to all the little babies and all their equipment quick.  You can hear all the respirators going away.  So here is what I can expect...Toby will have a feeding tube in his nose.  This is how he will get his feedings from birth until after he is doing well after the surgery.  He shouldn't need a respirator until the surgery.  He'll be on one then and then they will take him off when he wakes up.  They also said there could be another line in his umbilical chord but I absolutely can't remember what that one would be for.  I know it will be a long day tomorrow, and I'm sure I'll have my moments.  I am trying to focus on the joy of the occasion and how excited I am and not about everything that could go wrong.  Please pray for us more now than ever.  Night!

9/26-Catching UP

Wow! I am already falling behind on my job.  Yesterday was a tough day because I was sick.  I guess I caught a 24 hour stomach bug in the hospital.  Today is much better though.  I had a sonogram on Thursday and everything was still looking fine.  We have still been monitoring twice a day.  All the nurses say it seems to take him a little while to get going but I think they just catch him during his naps.  The NICU educator came by yesterday and visited with me.  It makes me nervous, but talking about it helped a little.  He answered a lot of questions I had about feeding and bonding that I had some concerns with.  We were suppose to go down there and look around too but they had a baby come in yesterday that they had to work on and it just never happened.  Maybe we will get to go today.  I am so thankful for my doctors.  Dr. Atkinson came by yesterday and we had a good discussion.  I had been getting pretty anxious about everything (since all I have to do is sit here and think about it).  We talked about trusting God.  

I got a 3 hour pass yesterday.  We went to eat and I got a pedicure.  Eating wasn't too great since I had been sick, but the pedicure and the company was awesome!  I get to go again tonight.  I am really looking forward to it because I actually feel like eating this time :)  Thank you for all of your prayers and sweet comments.  Please pray for my ability to understand God is control and that he will see us through all of this.  Also, we ran into Russell Casillas this week and his baby was born really early and is in the NICU here.  He said their baby would be here for six weeks at least.  My thoughts have been with them and wanted you all to lift them up in prayer as well.  

9-23-09: Visiting Today

What a fast day!  I have not even had time to be bored as I have had many stop by to say hello.  It's so fun to sit and visit without being busy thinking of work...having a baby...surgeries...etc.  Thanks to everyone who got to come by :) God has blessed us with a calming sense right now.  No new news today.  Just another steroid shot and monitoring.  We are suppose to go visit the NICU tomorrow just to check things out.  I hope every day goes by this fast and Monday will be here in no time!

9-22-09: Going to the Hospital

Unfortunately....facebook is blocked up here at the hospital.  I can post status updates on my phone and view your responses and messages through email, but you facebookers know that just isn't enough!!!  You all have been so wonderful to us and your prayers have lifted us up and are working.  I wanted to be able to share what's going on (I'm so bad about making phone calls) so I'll try to post some information everyday.  Keep in mind I am a math teacher so writing may not be perfect!

Today was a true test!  I came to the hospital thinking we would have a baby here within 1 day.  Every time I think I am in control I get reminded of who's boss.  Toby's fluid had meconium in it (which is the baby's first bowel movement).  Usually this doesn't happen until after birth, but because S.B. can sometimes come with bathroom issues...his is early.  As a result the tests they run for lung development can be inaccurate.  We had two tests and one showed they were ready, and one did not.  Since we have no way of knowing which one is right the Dr.'s feel it is best to wait until Monday.  There is also the whole meconium issue.  They have told me the baby is safe as long as there are not signs of distress.  So...they are keeping me in the hospital so that they can monitor him twice a day.  They are also giving us another round of steroids to speed up lung development.  

I really thought I would be so angry about this, but we really feel an acceptance about waiting.  We want Toby to have the best chance he can, and he is already going to be faced with so much upon his arrival.  God is working in us and for us.  We feel so blessed to have such loving family and friends.  I am trying to be like Joshua, and understand that God's way is so much easy than our own way.  The hospital is not too bad.  I can get out and look around if I want as long as I don't leave.  I know the rest is good (today is the first day I am not hurting!). The nurses also said I can get a pass from my Dr.'s and maybe go out to eat or something for a couple hours.  I might try to do that tomorrow :)  Time to get myself ready for bed.  More tomorrow...