10/27- Doctor visit

Just wanted to let everyone know that I took Toby to checkup with the Neurosurgeon.  Everything looked great and we don't have to go back for 10 weeks!  Yay!  Also, a good friend of mine from the past was working as his receptionist.  Love it!  Have a good night everybody.

10/24 - Milestones

8 years ago today I carved a pumpkin.  Haha!  There really is a lot more to it than that.  We carved pumpkins at youth eight years ago today.  Of course like any of my artistic ventures mine stunk!  It probably fell in the middle.  After that Adam asked me to be his girlfriend.  I remembered this today and I thought it seemed special because today is also the one week milestone of us being at home.  Who knew we would be here.  I can truly say life has made me very happy!  Time really flies.  Toby is really doing well.  One thing I can say for sure is thank goodness I live in the same town as my mommy!  He got to meet a lot of family this weekend and it is so fun to show my baby off :)  We also had our first pediatrician appointment yesterday.  When you are in the NICU you have a neonatologist instead of a pedi so you don't meet up with them until after you are discharged.  Dr. Hanson is Toby's Dr. now and I felt really good about everything.  He is up to 7 lb 11 oz so we know he is really holding onto his calories.  Yesterday was also the first day I took Toby out.  We also went out today (to Mom's house).  It is nice to get out of the house, but I am really trying to keep him out of public areas.  

I really must say what a gift it is to be able to hold your baby in your arms.  Things for us are so normal now...but I can't help but to remember all the families in the NICU and wonder if they are still there.  My mom's cousin had their baby on Aug 10th (24 week gestation baby)...and they are still there.  This makes my three weeks there seem like a brief moment.  As a new mother I try to remember how lucky we are to be doing so well when we are up in all hours of the night :)   I am so glad we made it to this point.  Now if Toby can only figure out what nighttime is and that Mama needs some sleep :)  I also just want to say how blessed I feel being a part of this community.  So many have been generous with visits and dinners.  I feel spoiled and loved...and I do believe these feelings are good ones!  Thanks to everyone who has been such a great help!

10/17 - We Are Home!

Here is our sweet Toby in his carseat!  What an exciting day.  We got to come home today.  Of course it feels wonderful.  Thank you all so much for the prayers and support while we were in Lubbock.  We woke up this morning, finished getting ourselves out of the RV (it felt like we were moving), and were dismissed from the NICU around 10:30 am.  We were home before noon.  Even though we had to stay forever, I really feel comfortable with Toby's health at home, which was really important to both of us before we got here.  Today we were definitely tired, but I think tomorrow will  bring a new day and we can start finding our rhythm.  I remember the day when I found out Toby would have some problems.  I remember feeling so lost and hopeless at the thoughts of all the surgeries and pain he would have to go through.  I have worried about it everyday for the past six or so months.  I finally feel like we are through with the tough part.  I finally feel like I can let that go.  I can start enjoying this and feeling normal.  I know Toby will have more procedures in the future, and that there will be harder days than some, but I know the toughest part is behind us.  I know we could not have done it without our God and the prayers that he heard.  Love you all... We are going to bed !

10/14 - Due Date :)

Today is my due date...and I must say...I am so thankful I am not having a baby today!  I am also so thankful I am no longer pregnant.  I can tie my shoes with ease, bend over, walk without waddling, and I can go all night without using the restroom!  So now that I have that over - to the good stuff!  Toby is doing so well.  It seems like he is feeling so much better.  He can move around now and lay in different positions so I know that is more comfortable for him.  He can also be held again...I am sure you know how happy that makes both of us.  It is so good to see him better.  They are telling us we might be able to go home on Friday or Saturday.  Not holding my breath, but it sure will be nice if it happens!  Thanks for all your prayers, they are really paying off. 

10/11 - Finally....An update!

By popular request...here are some pictures that have me in them.  The top one is a family picture one of the nurses took for us.  It hangs on Toby's bed.  I love it!  The second one is a picture of me holding Toby for the very first time.  It is from when he was four days old.  I think this picture is one of my happiest moments ever!  When I see how bruised and red his back is here it is unbelievable.  It looks so good now!  They took the stitches out yesterday.  Today is Toby's 14th day in the NICU.  It is my 20th day here at the hospital.  There is no doubt that I am tired, frustrated, ready to be home, and everything else.   However, there is no QUIT with a baby in NICU, so we just keep going.  The past few days have been a lot of waiting.  Toby has the drain in his head and can't turn his head to the other side.  I can't hold him for now, and that is of course hard too. He's sick of laying in one position for five days straight.  The only thing that satisfies me is that I know he will not remember any of this.  Besides his frustrations he is the sweetest baby.  He loves his bottles and feeding times.  He wiggles around and shows off his strength.  He pretty much can stand up on his feet (ha ha I know that sounds impossible...but its true) I can't wait for you all to meet this special person!  Toby's hydrocephalus is borderline between being controlled and needing a shunt.  So this is why we have been waiting and observing.  Today we monitored the Inter-Cranial Pressure and I think Dr. Nagy has finally decided to shunt him.  Even though we would prefer not to have one...we are okay with this decision.   We are still waiting to find out the exact plan and what time his surgery will be.  The one thing we know is that it will be sometime tomorrow (mon).  Waiting for surgery is terrible, and I think that is the worst part.  I am trying not to think about it yet, but of course it weighs heavily on my mind.  Please pray for us and Toby.  I know he won't remember these days, but I feel so terrible that he has to go through everything he's dealing with.  I think they will run antibiotics for 72 hours after surgery and then if he is doing good we should get to come home.  I am hoping that by the end of this week we will be back.  :)  Pray for that too!  

10/7 - Setbacks

I went in to feed Toby this morning and the circumference of his head had increased quite a bit since the day before.  Also, the fact that fluid was coming out of the incision threw up some red flags.  Dr. Nagy said he knew it was time to get rid of the fluid.  Toby had an external drain put in his head today.  He didn't put in a shunt yet because he is at risk to an infection because of the fluid that had been coming out at the incision site on his back.  So for now the drain allows the fluid to come out in a tube.  If he goes three days infection free Dr. Nagy will put in the permanent shunt.  It has been such a long and emotional day.  I fed Toby at 10am and then they would not allow him to eat because he was going into surgery.  They took him to surgery around 6pm.  That is 8 hours of an infant not eating.  I held him in my arms and he cried for 2 hours.  It was so hard and it felt abusive.  I was so relieved when he came out of his surgery and he immediately wanted off the ventilator.  He is so tough!  They have him sedated for now, but when he wakes up he can eat.  They will keep him pretty out of it for the next three days.  They want him to stay calm and quiet.  He can't turn his head over and lay on the side the drain is on.  This is a challenge with Toby since he loves to maneuver himself around his bed.  He turns his head side to side all day.  The nurses will really have to watch him.  It is a bit disturbing for their to be a tube in coming out of his head.  It is hard for us to see, and I can't imagine what it is like for him.  I am waiting for their call that he has woken up.  I will be so happy to know he has had something to eat.  I know we will have to do all of this again soon, but I also know it is part of what he needs.  Going home Friday is now a lost idea.  We will just start hoping for next Friday.  I won't lie it is so disappointing to not be going home.  This is our 16th day here, and I miss home.  Please pray that Toby does not already have an infection and that he won't get one.  

10/5 - Another Day

Greetings from the parking lot!  We had a good/confusing day.  I saw Dr. Nagy (neurosurgeon) first thing this morning and he said everything looked good.  Then I saw Dr. Sutter (neonatologist) and she thought his head looked swollen.  ????  Then this evening my nurse did the measurement and it was the same it has been the past three days.  So who knows.  As far as I know...things are good.  Toby also had some renal tests ran today.  People with S.B. tend to have bladder/bowel issues so he has a urologist and he wanted to see what was going on down there.  We haven't heard anything back yet as to what the thinks.  I got to feed Toby "the natural way" today.  It was very special.  They took him off of his food restriction so he was very satisfied to eat that way plus get more from a bottle.  We could not even get him up for his 9 pm feeding.  He seemed so happy and comfortable when I left a second ago.  A small concern is Toby has developed a little sleep apnea.  His oxygen drops during his deep sleep so they say he stops breathing for a few moments and then starts back up again.  They said its not a huge thing to worry about unless his heart-rate starts to drop.  So here are my prayer requests:  hydrocephalus stays controlled, apnea problem goes away so that we can come home Friday, and that urology report comes back good.  Also, there are so many parents in NICU that I have been thinking about.  I always wonder if they have the same support system we have.  I hope that they do, but I always want to lift them up as well.  As always thank you for lifting Toby up in prayer.  Night all!

10/3 - Toby's Progress

Every day it seems as though Toby is getting more and more comfortable.  We got some great news today.  They did another ultrasound of Toby's brain.  Based off of how he is doing now he is classified as having controlled hydrocephalus which means he will not need a shunt.  YAY!  PRAISE GOD!  WOO HOO!  He has a little bulge on his forehead that we will be watching.  We can now lay him on his side, and we are starting to elevate his head  a little at a time.  The doctor says if he continues to look like he does now then we will possibly go home at the end of this upcoming week.  This is so exciting because nobody has mentioned home since we have been here.  Besides the good news it has been wonderful holding and loving our little one.  Toby just loves to be held and I love to just sit and rub his little back and his soft head.  Adam and I have been doing so good.  We are very comfortable in the RV and we are getting some good rest.  Toby is on an eating schedule where he eats at 9, 1, and 5 every am and pm.  We enjoy going to see him at these times.  We are starting to get some visitors and I have enjoyed showing off my sweet one with pictures.  Tonight we went to my aunt's house for dinner.  I am blessed with such a great family and I have been taken care of by everyone!  I must say I that I am really learning so much about faith.  This has been the theme of my life for the past six months.  God has given me everything I have asked for.  I really figured Toby would have to be shunted, but God is taking care of him.  He falls in 20% of infants with spina bifida that don't need one.  That is awesome!  Thank you all for your prayers.  Not only is it a blessing to Toby, but it is teaching two new parents a whole lot about the Lord.  

10/1 - Being Released

Because of the pending surgery I was not able to sleep.  When we woke up we were waiting to hear back the results of the ultrasound.  Dr. Nagy did not think the hydrocephalus was bad enough to shunt today.  However, he still feels like it will need to happen and said "maybe tomorrow."  They said it is probably bound to happen it is just a timing issue as to when.  They don't want to put in a shunt if there isn't enough fluid to drain.  So I ended up just being exhausted all day long.  It was probably the worst day since we've been here.  All the nurses Toby has had so far were off and we had a new set.  I wasn't exactly pleased with the way everything was handled.  I learned today that you have to speak up!  The night nurse was great though and everything tonight has gone really well.  By the way....I got to hold Toby today!  It was the most amazing feeling.  He felt so sweet in my arms. I finally felt like I was  a mother.  I know he enjoyed it just as much as I did.  It was hard to put him down.  We are doing his feedings in our laps now.  They lay a pillow down and he lays on his stomach and we feed that way.  I was released today and we moved out into the parking lot.  It is really nice and we think we will be really comfortable.  It was such a relief to not have to leave him.  Lindsey came over to help get us settled in, and Dad helped get us some things to help make it feel like home.  It is killing me that Lindsey and Jacob are not able to see the baby.  They have each seen him once.  I know Lindsey saw him right after surgery... I wish she could see the progress he has made.  It is unbelievable.  Patience is a rotten fruit.  Dad got a lot of pictures printed off of his camera.  It was really sweet...I think new parents need something to show off.  It is also fun to lay them out and look at him.  Toby is really getting his schedule down.  He eats at 9, 1, and 5 ams and pms.  Adam did the 1 o'clock feeding, and I just got back from the 5.  Toby was awake and patiently sucking his passie when I walked in.  He ate with his eyes open (which he usually doesn't open).  They are dark and gorgeous.  Well I had better put myself back to bed.  Dr. Nagy is coming by in the morning. If he feels the head has grown we are doing surgery tomorrow (I guess today now).  I know it is only a matter of time.  Thanks for your prayers and keep them coming.  Toby could have a very long day!  I promise to put a picture soon!

9/30 - Progress

 We were really busy today.  When we went down the occupational therapist was waiting on us.  She showed us some foot stretches that we started on Toby's clubbed feet.  She was really sweet and encouraging.  She thinks that they will need surgery eventually, but assured us that they will get to a normal angle.  She had some students with her as well and they had just finished learning all about clubbed feet and encouraged us as well.  She also told us Toby would be signed up for Early Childhood Intervention for his physical therapy.  She said they come to your house and work with you there until the are three.  We were excited to get started.  We also had to go to carseat class.  I know it seems pretty obvious how to use a carseat but I think it was good.  Well...it was for Adam anyway, my drugs prevented me from paying attention too well in a class (lol).  Toby's feedings went great today.  He was actually a little more awake during one of them and looked us over pretty good.  Usually in his feedings he just keeps his eyes shut and eats.  Tomorrow is another day.  Both our day and night nurses are off so we hope we get good ones to take care of him (I'm sure they are all wonderful...you just get comfortable).  In the morning the are going to do an ultrasound to check out the hydrocephalus situation.  If it is obvious it is there they will also do a CT scan and then Toby will get his shunt at 2pm.  His head did measure a little bigger today so I feel like its going to happen.  We are okay with this...and have expected this all along.  We of course hate the idea of surgery, but this procedure is not near as unknown and scary as the first one he had Monday.  This shunt will also take pressure off his back and help him heal.  We will also not have to worry about elevation once he has it so hopefully this means holding him soon.  I am also probably going to be released tomorrow.  We are borrowing an RV and will get to stay close.  So much stress I had about this day is gone and I am so grateful.  Please pray that things keep falling into place for us.