Thanksgiving Weekend

We enjoyed a wonderful Thanksgiving weekend this year. I decided to make my desserts on Wednesday this year so that I would not have to get up so terribly early on Thursday morning. I made Pineapple upside down cake and Pumpkin Cheesecake, both of which turned out absolutely amazing! I also prepared my sweet potato casserole so that all I had to do was stick it in the oven Thursday morning. It was so nice not to get up until 7:30 Thanksgiving morning. Daniel cooks the turkey every year. He always does an amazing job. It is always so moist and delicious.

We had a leisurely morning with Savannah, cooking, and watching the Macy's Thanksgiving Day parade. We went to my mom's house to eat at 1pm. My grandparents also came. Trixie too. We had SO much food. Everything was so yummy!!

We spent the day together, taking pictures and just hanging out. Daniel, Savannah, Trixie, and I all spent the night at my parents house. Daniel and I were going to go to Toys r us that night for some shopping but decided to stay home and enjoy some family time. We did however, get up at 4am Friday morning and go shopping. We got a few good deals and came home in time to shower and rest a bit before the Iron Bowl. My parents and grandparents came to our apartment to watch the game. We ate pizza and had a blast. WAR EAGLE by the way!!

Saturday we got up early and all of us drove to Birmingham to go shopping. Our first stop was Toysrus. Savannah racked up between what we bought and what my parents and grandparents bought her. Then we went to the Galleria and Savannah went to visit Santa. I was afraid that she was going to cry. She absolutely LOVED him. It was so hard to even get her to look in the general direction of the camera because she was so mesmerized by him. It was so precious. We were finally able to get a picture and then her daddy went to pick her up and turned her to him and she just started talking up a storm to him. I guess she was telling him what she wanted for Christmas. lol It was too cute! We then went and ate at J. Alexanders. My all time favorite steak plave ever. Then we went to a few other places, Daniel and I pretty much finished up Savannah's Christmas shopping, with the exception of a few small things, and then we came home. Sunday we had a wonderful Lord's day and relaxed at home. It was a great, fun, exhausting weekend. So many wonderful memories were made!

Tons to be Thankful for!!

I decided to write two posts today since tomorrow is Thanksgiving and I know I won't have time to write a post tomorrow. I have so much to be thankful for this year.

First of all I have a wonderful God who sent his son to die for my salvation. I am so thankful that even though I am so unworthy, that I have a chance to one day live in Heaven with him. It is my prayer that I live my life daily so that my family and I can accomplish this goal.

I have a wonderful Christian Husband. I am very thankful that I was fortunate enough to find such a wonderful christian man to spend my life with. Having someone with the same goal of going to Heaven to spend your life with is priceless. He is such a kind, considerate man and he works so hard so that I can stay at home with our little girl. I loved him so much already but when I look at him and Savannah together my heart just bursts with love and I just fall in love with him all over again. He is such a wonderful hands on father and Savannah is so fortunate to have a Godly father who loves her so much and is so involved with her.

I have a beautiful little girl. You know, as a little girl, it was always my dream to one day grow up, marry the man of my dreams and become a mommy. Well a few years ago I was faced with the very real truth that I may not be able to have a baby of my own. As most of you know, Daniel and I went through 3 years of heart breaking fertility treatment trying to conceive a precious baby. Well last year I was given the most beautiful blessing from God. This will be our first Thanksgiving at home with her. She was still in the NICU last year. I am thankful for so many things on her behalf. I am thankful that she survived her birth. I am thankful that she survived those first crucial months. I am thankful that she is so healthy. I am thankful that she is proving so many doctors wrong. I am thankful that she is in my life and has made it so much better. She has truly made me a better person and I pray that I teach her the ways of the Lord and that she grows up to know and love God. She is such a beautiful, vibrant, loving, smart little girl and the world is definitely a better place to have her in it.

I am thankful for my loving parents. They have always been there for me no matter what. They took Daniel in from day one and love him like a son. Not everyone can say that they are close with their parents and I count it a blessing that I am with mine. They are wonderful Christians and I am so glad that Savannah has them in her life. I am thankful that she will be able to grow up so close to them and have so many cherished memories with them.

I am thankful for my grandparents. I am thankful that I still have them around. I am very fortunate to have young grandparents who will be able to see my daughter grow up. (Lord Willing). I am thankful for everything they do for us and I pray that I never take them for granted.

I am thankful for my Church family at Prattville. They are such a kind group of people and I am so thankful that we have the opportunity to serve with them now. We have met some amazing people there who we have made close lasting friendships with and I am forever grateful for that.

Basically I just have a very thankful heart this year. Not just tomorrow but all the time. I have so much to be thankful for. The Lord has certainly blessed me this year and my cup is overflowing. This certainly is not all I am thankful for but I just wanted to point out a few things. I hope everyone has a very Happy Thanksgiving. I am very excited to kick this holiday season off!

Catching up on the last year.

So I haven't really blogged about the things going on with us over the last year. Let me tell you ..it has been one crazy year but it has been the best year of my life. Savannah is an amazing blessing and a wonderful addition to our family. I'm going to try and catch everyone up without making this a novel and hopefully tell things that I haven't already told.

When we came home, just a week before Christmas 2009, we knew it was going to be rough for a few months. See, the doctors scared us to death. They told us before we left the hospital...."DO NOT GET HER SICK"!!!! They were very adamant about this and told us all the scary things that could happen if she even got the slightest little cold. You see the common minor cold to an adult could be life threatening to a preemie with no immune system to fight it off yet. She also had a shunt in her brain...this complicated things even more. Needless to say, the doctors accomplished what they set out to do and we were absolutely petrified of getting her sick. This meant staying at home, with the exception of doctors visits, until cold and flu season was over. This also meant being very very careful about the visiting process. So I stayed home everyday with Savannah and went nowhere except to the doctor with her. Daniel went to work everyday but he had to strip his clothes at the door everyday and go straight to the shower before he was allowed to sit on or touch anything or anyone. At work he carried hand sanitizer with him everywhere and he did not touch anyone...not even to shake a hand. (And he was in sales at the time so you can imagine how that went). Only immediate family were allowed to visit Savannah and they were required to come straight from their house with freshly washed clothing, wash their hands thoroughly when they got here, sanitize, and where a mask and gloves. It was very hard telling people they could not come visit but it was for the safety of our daughter. Most people understood, there were a few who didn't and they got offended, but that was a small price to pay for my daughters well being. Let me just throw in that most preemies are in and out of the hospital fighting for their life due to all sorts of infections such a pneumonia and RSV during the first 3 years of their life. Some of these can't be helped... I understand that some of these HAVE to be put into daycare or have siblings who are in school. BUT..I have control over these things with my child and if I can prevent them from happening then I am going to do everything in my power to do it. Savannah is now 14 months old, and though many people laugh at my OCD germ issues..lol, she has only had one sickness in her entire life. That is a very rare thing for a preemie. Anyway...Savannah's first time out was on Easter. We were able to start taking her to church and places like that then. We still had to be careful about hand shaking and who held her..making sure they were not sick and that they were sanitized first. We still do that to this day. We have recently had to take her out of cradle roll at church due to cold and flu season being here again. Once she is about 3 years old we won't have to worry about all of this so much and I know we will probably have to deal with a lot of sickness due to her having no immunity to it..but hey..that's the life of having a preemie.

Now an update on her development. Let me just refresh your memory. At 3 days old we had a doctor sit us down and tell us that she would probably have to be institutionalized and would not even know she was in this world due to how bad her brain bleed was and the damage it caused her brain. She would more than likely suffer from Severe Cerebral Palsy, Blindness, Deafness, Mental Retardation, and she would probably never come off the ventilator or feeding tube. We also had docs along the way tell us that with a grade IV bleed you almost always have devastating lifelong disabilities and that while she COULD prove them wrong the she more that likely would NOT. Well let's just say our sweet girl keeps proving them doctors wrong left and right and she keeps proving the power of PRAYER!! As you read before she came off the ventilator pretty quickly and then the feeding tube while still in the hospital. Her eye exams have been great and she has passed all hearing exams with flying colors so far. Now as far as other development. As far as cognitive she is right on target with where she should be. Somewhere between her actual and adjusted age. She is very verbal. She talks non stop. Of course most of the time we have no idea what she is saying but she is perfectly aware. She does have a small vocabulary though. She can say Dada, daddy, mama, mommy, book, bye bye, baby, Trixie, hey, no no, she says ba ba for bottle, and yeah. She shakes her head yes and no when asked a question. She understands what no means (although she is a daredevil and will defy you). She loves to give love and kisses. Physically is where she is delayed. So far she has been delayed only...she has been able to do everything she should its just been months behind. She rolled over late but she did it. She sat up on her own late but she does it. She crawled late but she does it. She has yet to walk but I have no doubt that she will do that too. She has a physical therapist that comes to our home every two weeks to work with her. Her upper body is amazing and has no problems. She feeds herself, uses both hands, claps, etc. But her legs are a little tight. Mostly her hamstrings. We stretch them daily and that helps bunches. Some docs think she may have very mild Cerebral palsy in her legs..mainly her right, but some think its too early to tell. She has some little pink braces that she wears right now only when we are practicing standing to keep her from being on her tip toes. The thing with not being 100% right now is that she is still at an age where it is hard to tell. See a little leg tightness can just be a preemie thing. But either way..whether she does or she doesn't..we treat it the same way. All docs do seem to be agreeing that she will walk. Most micro preemies don't walk til they are two anyway so we have a while to work on it. At this point...I am just so grateful for all that she can do that they said she would never be able to, that this little set back just isn't that big a deal to me. Now with all of this said...we still won't know 100% of the damage to her brain until she is probably in school. She could have trouble in math (who doesn't), behavioral problems, ADD, etc. But what we do know is that for the most part she is going to be a happy, healthy little girl. I do know that she is such a blessing to be around. She is so beautiful..not sure how she turned out SO beautiful!! She is such a happy person and she loves life. She is fun and smart and teaches me so much about life. She makes me want to be a better person.

An update about our family for the year. As you know we moved to Prattville while Savannah was in the NICU. We love living in pville. We have however already outgrown our apartment, even though its almost twice the size of our last one. We are now members of Prattville Church of Christ and we are SO happy there. That is truly and amazing congregation and we have made some amazing lifelong close friends. I am so thankful for all the members there and I am so happy that Savannah will have such a wonderful church family to grow up with, with tons of children her age. They keep us very busy but we enjoy every minute.

Oh and I forgot to mention that back in April that Savannah had her permanent VP shunt placement surgery and did really well with that. It is working great!

Blogging Again

So over the last several months I have been a horrible blogger. I have had so much going on and have had absolutely no time to blog. I've missed it so I am going to start blogging again. I hope to do a much better job and hopefully keep everyone better informed of things. I last blogged about Savannah's stay in the hospital and was writing from my journal of her stay (more for me, so that I could have a record to keep on here) but I've decided not to do that since it is so time consuming. I am going to do a couple blogs just to get everyone caught up on what's been going on with us and then I will be starting with NOW. :-) So this is just a short blog to say Hello again and to let you know to start checking back for updates! Much love!

Journal entry's from Savannah's stay in the hospital.(Part 1) Sorry the posts are so long!

I decided that instead of trying to tell every little thing about Savannah's long stay in the hospital that I would just include some of my journal entries from her stay. I will even go back to the beginning. I think telling the story up to the last surgery was needed but I think the rest and some of the previous would be better told through my journal. I wrote in a small journal every day that I was with Savannah. Things that were happening, things I was feeling, things Daniel was feeling, etc. I will leave out a lot of the technical terms cause they are just confusing. Some is just bits and pieces of things that were going on. Others were things on our mind. So here goes:

9/14/09- I touched Savannah for the first time. Just barely with my finger. Her skin is still so fragile.

Savannah likes to hear her mommy and daddy talk to her. Her sats just way up when she hears our voice.

9/15/09 - was given blood. She wasn't replenishing what they were taking from her fast enough.

Reduced rate on her vent some.

Found a heart Murmur.

Taken to conference room and told that Savannah has grade 3 and grade 4 bleed on her brain.

Written by daddy: Miss Savannah Grace is a fighter and is very strong. It is so hard to see her and not be able to hold her. She has great nurses that take care of her but it is so hard because Mommy and Daddy are the ones that should be taking care of her. We love her soooo much. Both Shawna and I had a melt down when Dr. N told us about her brain bleeds. I have never cried that hard in my entire life. It is so amazing how much my love for Shawna and Savannah grow everyday. I feel so helpless no being able to do anything for her, but I know that God is good and will watch over our little Savannah. Today has truly been the hardest day of our lives, tears will not stop flowing down our face. I know when we leave here tonight it will be hard but we will be back at 5am.

9/15/09

Reduced her pressure and rate on the ventilator.

9/16/09

Doctor decided to try 1cc of pedialyte every 6 hours and if she does good then go to every 3.

Started giving her caffeine to help her to remember to breathe on her own.

So far brain bleed is not getting larger. Will have another head ultrasound on Friday.

Walked in after pumping, Daniel was already in there, and her alarm was going off. This was the first time we had seen this. Her oxygen level dropped to 60. They suctioned her ventilator and she was fine but this was super scary.

We we able to see her briefly without her eyes covered by the patch. She is so beautiful. She looks so much like her daddy. We also each got to hold her hand. She grabbed her mommy's finger. This made me tear up a lot.

She didn't do so well with the pedialyte. It just kinda sat in her tummy so they suctioned it out and will try again.

3/17/09

They are going to stop her feedings and try in a few days. She just isn't tolerating it yet.

Going to put some nutrients through her IV.

Checked on Murmur and said it is very small.

At one point Savannah had her hand on the plastic thing holding her ventilator so we asked if it would hurt anything. The respiratory therapist said no that some babies would grab on to their actual vent tubes and go to sleep. About that time Savannah grabbed hers. It was so cute and was like she heard the RT say it and was like "Look I can do it too!" She is so smart.

She will be getting sedated tonight to help her sleep.

9/18/09

She had her first poop today. It got all over her Foley catheter so they took it out and put a diaper on her.

From Daddy: Savannah likes to spread her legs and the nurses like them to stay bent and closed. Her nurse went and got some extra beanie bags to help her hold her legs up. Needless to say she didn't like this. So after many many kicks, Savannah finally kicked one of the beanies away and spread her legs again. But the funny thing was that every time her nurse would come over she would move her legs back (like she was innocent). Then as soon as her nurse would walk away she would spread her legs back out. I can already tell she is really smart and is going to get into a lot of trouble in years to come (We can't wait!) She is loved by so many people. We even had a family who we don't even know drop off a stuffed tiger and a card. In the card they stated that we don't know them, but they are praying for our little one. This was very encouraging and uplifting.

9/19/09

No signs of Hydrocephalus from the brain bleed yet.

Dr. N decided to try her on Mommy's breast milk instead of pedialyte and see how she does.

Mommy and Daddy were both able to hold her hand tonight and talk to her. Mommy told her that she loved her and she squeezed Mommy's finger. Daddy got ready to let go and she squeezed him harder like she didn't want him to let go. We want to try and make it a point to open her incubator and talk to her daily. We are so scared that she is going to forget our voices or who we are.

Also in the process of holding her hand and taking her pictures we discovered her first freckle. It is on he left hand ring finger. It is so cute.

From Mommy: Savannah seems like she has been resting easier today. Not as agitated, sleeping a lot on her own without sedation. She is so sweet, we could just stare at her for hours. She is such a beautiful little girl. We can't begin to put into words the love we have for her. I just watch her daddy look at her and can see the love in his eyes. He is such a proud daddy and is already wrapped around her little finger. I fall in love with him all over again every time I see him with her. He is an Amazing Daddy!

A Poem From Daddy:

For God so loved,

He gave his only.

Our only came,

She came too soon.

We tried so hard,

But it would not work.

For God had a plan,

To put her to work.

To fathom the love of a parent seemed far fetched,

Because our little Zachary went straight to Heaven to rest.

Now she is here for all to see,

And the love of a parent is real to me.

We don't get to take her home at this time,

but she will live in my heart til the end of time.

9/20

Savannah did very well on Mommy's breast milk. She knew exactly what she wanted. This made mommy cry that she was finally able to give something to her little girl.

Had to give her a little more blood.

Mommy and Daddy got to do a lot of hands on with Miss Savannah tonight. She was very good. First, daddy got to change her diaper, then he got to hold her up in the air so they could zero out the bed to weigh her. She lost 4 oz. She weighs 1 lbs 13 ounces. Mommy got to hold Savannah up while they put her new Pooh sheet on her bed. Mommy got to hold her up a little longer and they even took her eye shield off so we got lots of pics.

9/21

Savannah was turned on her tummy for the first time and is receiving room air through her vent.

She has a head full of dark brown hair all over.

Her murmur may be slightly bigger.

Took her off the jaundice light.

Started feeding her every 9 hours instead of 12 now.

Savannah is such a strong little girl. She was laying on her tummy tonight and she literally picked head up and tried to turn it over but the ventilator wouldn't let her. She also got up on her knees like she was gonna crawl. She is so feisty.

9/22

Increased feedings to every 6 hours.

Going to try to do picc line tonight or tomorrow so they can take the lines out of her belly button.

She did get her picc line put in her leg and one of her lines came out of her belly. The other will come out in a few days.

Tonight Savannah put her hands over her eyes like it was too bright so we covered the top of her incubator with a blanket. She then looks like she gives us a thumbs up and moves her hand away. lol

Head Ultrasound looks the same. Still no sign of hydrocephalus.

9/23

She is now getting fed every 3 hours.

She was wide awake when we got here tonight.

She is so strong. When her nurse was changing her diaper while she was on her tummy, she pushed up with her elbows and then put her butt up in the air with her feet. We thought she was going to stand up. We were too slow with the camera, so I only got pics of her on her knees with her butt in the air.

9/24

Nurse said her head still feels good and closed but is a little heavy which is to be expected with a bleed. She said it could go either way. The bleed could either reabsorb and she get lucky or it could block the drainage of fluid and cause hydrocephalus.

Mommy got to change Savannah's diaper for the first time tonight.

Will start increasing breast milk by 1cc every 12 hours.

Back on photo light due to bilirubin being up.

9/25

She is up to 3cc's on feeding.

Sr. W called this afternoon to tell us that Savannah's picc line was showing redness and her blood count was high so they are starting her on antibiotics and taking out her picc line and umbilical line. They will put in a regular I.V. and try a new picc line tomorrow. He said the infection was in her blood stream but he thinks we caught it early. This was the first time a doc has called us on the phone so it scared us.

Started her antibiotics for the possible infection. She now has a regular I.V. in her left foot.

She is back off the photo light.

Daddy noticed that her left foot looked red and puffy and mentioned it to the nurse. She said it was fine. When we called later that night they had taken that I.V. out and put a new one in her right foot.

Her culture came back as gram negative . She is on the correct antibiotics for that.

9/26

She is back up to the weight of 2lbs. 1oz.

9/27

They may put her on cpap if her next blood gases are good.

They called us at 2 pm to tell us that they had taken her off the ventilator and she is on the c-pap. So far everything is going well.

From daddy:

At about 5:30pm we decided to go to the hospital to see Ms. Savannah because she wasn't doing too good on the c-pap. Well while we were walking in Dr. W was calling mommy's cell phone. Found out that the infection she had was actually in her trach and was e. coli. and they switched her antibiotics to get rid of it.

Mommy got to hold Savannah for the first time today. Then daddy got a few min. to hold her. I was getting all teary eyed when I saw Shawna holding our little snuggle bug. I know she is going to be a great mother. Over all she is doing really well now. At one point the c-pap had slipped out of her nose and no one had noticed until daddy said something about it. Dr. W said "well that's a good test because she is still sating in the 90's without the c-pap".

Starting to up feedings by 1 cc every 9 hours.

She is currently on 4 cc's every 3 hours.

We love our little snuggle bug soooo much. Lot's of pics of us holding her for the first time today.

9/28

Put new picc line in.

Heart echo showed that she still has a small murmur but the cardiologist still wants to leave it alone for now.

From Daddy:I got to hear Savannah cry for the second time. The first time was when she was born. She sounds hoarse because she has only had the vent out for 2 days. This was the sweetest sound a daddy could ask for. I hope to hear this sound a lot more. I hope the next time I hear her cry mommy can hear her too.

9/29

From Daddy: We were able to hold Savannah again tonight. She does very well on her sats when we hold her. It gives me goose pimples to see Shawna hold our sweet little angel. Savannah is still doing good with her feedings and blood gases. They may increase her feedings tomorrow.

Savannah sucked on her pacifier for the first time.

9/30

Head u/s showed bleeds are the same.

She had a rough night last night with apnea and bradycardia but is doing ok now.

She keeps pulling the cpap out of her nose.

10/1

Put her on a bump rate on the cpap. This means she will be given 10 strong breaths a minute.

Needed more blood this morning.

She us up to 8 cc's every 3 hours of breast milk.

A Mr. Owens stopped by today. He gave blood at Life South and he was a match for Savannah and was CMV negative. He said he gives blood every 2 months and somehow he was told that his blood was going to Savannah. He came an scrubbed in to visit her. This was a special favor since we were only allowing parents and grandparents back there. He said he always visits the patients that his blood is tagged for. The world needs more people like this in it.

Tonight we were talking to Savannah and her daddy was telling her how beautiful she was. She would open her eyes and just look at him. He asked her if she was a daddy's girl and it looked as if she grinned. That made his day. I fall in love with him all over again when I see him with Savannah. I know they will be so close.

10/2

Her weight is now 2lbs 4 oz.

Her head measurement increased a bit more than normal but they told us it didn't mean treatment that he head still felt great.

From Mommy: I worry so much about her little head. I don't want her to have to go through all these complications. She is so sweet and it will break my heart to see her have to be in any pain. Her daddy and I pray to God daily that she will get better soon and not have to be in any pain. We are so in love with her and proud of the strong little girl she is.

Her feedings are at 10cc's.

From Mommy: Mommy and Daddy were able to hold Savannah again tonight. We were so very excited. We wish we could hold her all the time. She does so good when we hold her. First of all, she loves to be wrapped in her blanket. She is a little snuggle bug. She also sats really high when we hold her. She was sating 100% on room air at one point when mommy held her and 100% almost the whole time daddy held her with a very small amount of oxygen. She just lays there so content in our arms. The nurses even comment on how well she does in our arms. Personally I think the doctor needs to write orders for us to hold her several hours a day so she will do well. hehe

10/3

Had to give her more blood.

She looks really tired to us today. We are hoping she will get some good rest tonight and feel better tomorrow.

10/4

Nurse called at 7 am. They had to reintubate her at 3am. We are very angry they did not call when it happened. She started going limp and not doing so well on the cpap. They said she is doing alot better on the vent and is feisty now. Guess she was just tired. This was her first major set back.

Savannah has started to show signs of hydrocephalus. Her head is feeling full and went from 25 3/4 to 27 cm overnight. This could be a reason for all the bradys and apneas and why she had to be reintubated. We will have an ultrasound in the morning to see if we need to take her to Birmingham. We are so scared!

Weight is 2lbs. 8oz.

10/5

She had her ultrasound and we are waiting for results.

She lost weight today. 2lbs 8 oz.

We feel like the docs are not being aggressive enough.

10/6

From Daddy: When we saw her today they put a pink bow in her hair. They also ran out of beanies so she is wrapped in a blanket thing. The head ultrasound shows no changes but we are still really worried about everything. We had the nurse write in the chart that we wanted a call!!

She now weighs 2lbs 9 0z and her head measurement stayed the same.

10/7

Increased feeds to 15cc's.

Weight 2lbs 11 0z.

Head size 28.

Savannah is more than likely gonna have to go to Birmingham. She will need a subgaleal shunt. We don't know when it will be though.

10/8

At the visit we made the doc call Birmingham while we were there. They kept dragging their feet and we didn't want to wait any longer!! So he called while we stood there. They said they would come get her that afternoon. So Daddy went to work and Mommy ran home to pack.

From Daddy: The nurse called me @ work around 2:15pm and said that the transport team was on their way and we had about 30 minutes to get there. I called Shawna but she was not where near packed so she could not come to see Savannah off because we needed to be ready to leave soon too. So daddy had to come and see her off. When I got there the transport team had just arrived. She would be going to the Children's Hospital by the Care Flight Team. She got her first Helicopter ride on her daddy's birthday. I was able to have some one on one time with her before they got her ready. She was very alert and when I would tell her that I loved her and that everything would be ok she would squeeze my finger and melt my heart with her baby blue eyes. I was able to follow her to the helicopter pad and take a few pictures with the disposable camera since I didnt have our digital with me. I was holding things together pretty well at this point. After she was loaded in they started to take off. I absolutely lost it. So I kinda composed myself so I could call Shawna. I started feeling really sick so I ran to the bathroom and called Shawna in hysterics. My sweet little angel was in flight to the Children's Hospital and Mommy and Daddy couldn't ride with her.

I will continue in another post on the journal entry's from her stay at children's. As you can tell it was a long hard journey.

Savannah's time at The Children's Hospital.

I forgot to mention in the last post that all this happened on Daniel's Birthday. We arrived at the Children's hospital around 7pm that evening. The NICU was closed at the time due to another baby having some complications but they were nice enough to let us in for a few minutes to visit with her so that we could see that she was ok. She was settled in and resting well. We were told that no decisions had been made on when the surgery for shunt placement would be and that as soon as a neurosurgeon rounded on her they would call us. So after about 15 minutes we had to leave and go find us a hotel for the night. It was so late and dark and we knew nothing about B'ham so we just drove a few blocks and pulled into a Marriott hotel. It ended up being a really really nice hotel and since it was late and we had not eaten yet we just paid the $250 for one night and left it at that. But the room was amazing. Not that it mattered. We didn't get much sleep that night. We were so nervous, scared, uneasy, you name it, we felt it. We knew nothing of what the surgery would entail. No one had told us anything other than the fact that our daughter had fluid on her brain and something needed to be done about it. We called at Midnight that night to check on Savannah and the nurse was super nice. She answered alot of the questions we had about how things worked there. The NICU hours were 9am to 2pm; 5pm to 10pm; and 12am to 7am. The times they were closed were for shift change. Well we received a call the next morning from one of the neurosurgeons explaining to us that Savannah needed surgery and that she needed that day, soon in fact. She explained that Savannah had been taken for a CT scan earlier that morning and it showed that the grade 4 bleed had blocked the pathways where the fluid normally would go. She then told us that she would need a Subgaleal Shunt which is temporary and that the reason she was receiving this one instead of the Permanent VP (ventricularparataneal) shunt is because she was still too little. She needed to be at least 4 lbs, preferably bigger in order to get the permanent one. So they were going to be taking her to surgery ASAP. Then we had to talk to the anesthesiologist on the phone and she let us know all the risks which are pretty much the same as with anyone and we had to give consent. They promised us that they would not take her down to surgery until we got there. So we checked out of the hotel, loaded up all of our stuff, and hurried to the hospital. My parents and grandparents were there when we got there and Daniel and I went in to the NICU to see Savannah while they waited in the waiting room. We visited with her for a little while and we were able to meet the neurosurgeon who was going to be perfoming the surgery. Dr. O, although lacking in bedside manner, is chief of neurosurgery and has people from all over the world who come to learn and work under him. So although we did not care for his dry personality, we loved the fact that he was so qualified. I didn't want him or need him to be my friend I just needed him to fix my little girl. Soon after speaking with him they brought the portable bed with all the portable equipment. They moved her to this bed and told us to follow them. On our way out to the elevators my parents, grandparents, and preacher (at the time) and his wife were able to see her. We rode the elevator down and then walked down the long halls. (they probably just seemed long at the time). They took us into this holding room where we would wait for all the docs and nurses to get prepared for her. We waited what seemed like an eternity. Daniel and I both were so nervous that we later found out that each of us had to lean against the wall because of almost passing out. Seeing your daughter in this situation and knowing that she would be leaving to have surgery when she was sooooo tiny was the hardest thing ever. Especially with the type of surgery it was. As we were all standing there waiting for the last of the people to come the respiratory looks down and tells us that she had never turned on the ventilator and that Savannah had been breathing on her own that whole time. And her Sats were high. This was a good sign. But since she was about to have surgery they didn't want her getting too tired so they turned it on. Soon the rest of the crew showed up and they rolled our precious little girl away. Both of us just stood there and cried. It was so hard to watch them roll her down the hall. So we went to the waiting room and Daniel went back upstairs to tell everyone to come down to that waiting room. We were told that this surgery would take a couple hours and that they would call as soon as the surgery had actually started. So I left to go pump Savannah's breast milk down in the lactation center and my mom went with me. We were gone for about 30 minutes and when we got back Daniel said they had just called him to let us know that the surgery had started. So we got comfortable for the long wait. It wasn't 5 minutes later and Dr. O is coming out tapping me on the shoulder and says "Mr. and Mrs. Hatfield...over hear" and points to the corner. He has this horrible look on his face. We are all freaking out. My heart was racing and I felt sick. He begins by telling us in all these doctor terms what could have gone wrong with the surgery. He says nothing about how Savannah is doing and still has this very grim look on his face. Finally, I just interrupted and asked if my little girl was ok. He said "the child is fine." So then I was able to breathe again and start comprehending what he was saying. Everything prior to that was just rubbish. (Hey I told you he had a horrible bedside manner but he is a great doctor). So He told us about the procedure and how the subgaleal shunt goes just under the scalp and how she would have a large pocket of fluid under her scalp that would look pretty abnormal. But he said this was a good sign that the shunt is doing its job. He said to give the nurses about an hour to get things back settled before we went back in to the NICU. So we decided to go get something for breakfast. I could hardly eat but we went. Right before we went our preacher and his wife left. They would not have been able to see Savannah anyway because only parents and grandparents are allowed in the NICU during flu season. So we finally go up there to see her, just Daniel and I, and she looked so pitiful. She was still heavily under the anesthesia and she was just laying there all limp and pitiful looking. She had this big bandage on her head. The nurse handed me a little bag with her hair in it that they had to shave. (Her first haircut so to speak). So we sat with her for a couple hours, just staring at her, cause she wasn't moving around like her normal self due to the meds. So we decided to leave, get lunch, and find a new hotel to stay in since she was resting so well. We left and ate lunch with my parents and grandparents. Well while we were at lunch I got a phone call from the hospital. My heart dropped!!! I thought something had happened since they said that would be the only reason they would call. Well it was her nurse and it ended up being great news. They had just extubated her (took her off the ventilator) and she was now on oxygen nasal cannula. So she skipped right over the cpap machine. They said she was doing great and was on very low oxygen. I just wanted to cry. Our little girl is soooo strong. So we left the restaurant and drove down the street to a Best Western. We checked in there and thought it was gonna be a good place to stay because it was just a few exits up from the hospital exit. It had a small fridge to store my breast milk and there was a Walmart across the street. So we took all of our stuff in and then went back to the hospital. Savannah was a little more alert and moving around and her face was so beautiful without that big tube down her throat. She still had the feeding tube in her mouth but they later moved that to her nose. She did great the rest of that day. Well that night the Best Western turned out to be a bust. The fridge stopped working in the middle of the night and I had to throw out a good bit of breast milk. I was not happy. So the next morning. we packed up once again, checked out, and went back up to the hospital. We were told she had done great all night. We were able to see a small pocket of fluid on the side of her head so we knew things were going good. Of course they still had to measure her head daily to keep an eye on it. The average life span of the temporary shunt is like 35 days. So now all we had to do was sit and wait for her to gain weight. Her vital signs were staying good and she would drop her heart rate every now and then but that was to be expected in a preemie and she always brought it back up on her own. That night we checked in to a Holiday Inn Suites. We ended up staying there for about a week. On Sunday we went and found a church and then went to the hospital to see our sweet girl. My parents and grandparents drove up every Sunday and went to church and then came to the hospital with us. Then we went to lunch. On Monday Daniel had to go back to work. You cannot even imagine how hard this was for him. So he got up early and made the long drive to Montgomery and I went to the hospital. I would stay with Savannah until they shut down the NICU at 2 and then I would either go shopping or back to the hotel to rest. Daniel would get home around 7 at night and we would go back up to the hospital and visit with Savannah until 10 when the unit shut down again. This is how the weeks went the whole time we were there, with the exception of when we moved, but I will get to that later. On the weekends we would spend as much time at the hospital as we could. After a week of staying in the Holiday Inn the financial aspect started to add up so once again we were looking for a place to stay. After seeing several nasty places we came across the Marriott towne suites. These people were super generous. They gave us a great rate for a room with a full kitchen. They were amazing. And they had a laundromat. So once again we moved all of our stuff into a new place. Well about 6 days after Savannah's surgery I kept telling the nurse that something was not right with Savannah. She was sleeping all of the time and she kept putting her arms over her eyes like her head hurt. They kept telling me that it was nothing and that everything was fine. Then I told them that I thought her pouch on her head felt smaller, almost gone. They told me that it could happen sometimes and doesn't necessarily man anything is wrong. Well that night, after not feeling right all day, I continued to push the issue. They measured her head and it had gone up a whole centimeter over night. So I made them call Neurosurgery. They took her for a Cat Scan and sure enough her shunt had stopped working. It was blocked and was no longer allowing the fluid to drain. Well the next morning a neurosurgeon came in and stuck a needle into her intracranial space to draw off some fluid just to make sure that there was no infection. They would have to do a different surgery if there was infection. They let it grow for a day and then 9 days after her initial shunt placement they went in a did a shunt revision. This meant another dangerous surgery, another wait in the dreaded waiting room, and another awkward talk with Dr. O. He came out and said that some of the blood from the initial bleed had broken off and clogged up the shunt. This was fairly common. He said it would probably happen again and that the average life of these things was still 35 days. Well guess what? She still has that same shunt in her head. It was put in on October 18th. That is way more than 35 days. And we are still going with it. The recovery was the same. She came back from surgery on the vent but was taken off very soon. So then it was just a waiting game. I think this post has been long enough so I will continue soon in another post.

This picture was taken just a little while after her first surgery..

They let us put a hat on her to cover her bandage.

Look No Ventilator!!

Catching Up!

Some of you have asked me if I was gonna start blogging again. I have thought about it and it is something I want to start again. The last several months have been a complete blur but things are finally starting to get back to normal. Or at least our version of normal for now. Not only do I want to catch everyone up on our life over the past 5 months but I want to use this as a journal to keep up with my sweet baby girl's life. Obviously I can't put the last 5 months in one entry so I will break them up. This first one will be about the first 3 weeks in Baptist South NICU.


When I first got there, after leaving the hospital, I was so nervous about seeing her. I mean Daniel had brought me back pictures but as you know pictures just aren't the same. I walked in and saw my baby, mask over her eyes, bright light shining down on her, several tubes coming out of her, a tube breathing for her, no clothes on, just laying there...so helpless. I got this huge knot in my stomach and just started crying. I mean, I was her mommy....why could I not help her? The nurses were really nice and came over and answered all of our questions. They told us that she had an infection that she had gotten when they put the tube down her throat. They told us that it would be the first of many and that all preemie babies get infections. (Let me just say that this was her one and only infections as of today). The next couple days were pretty much the same. Then we spoke with a doctor who told us that due to her being so early, they needed to do an ultrasound of her head because she was at risk for having a brain bleed. He didn't go into any more detail at that time. The next day however he wanted to sit down with us in a conference room and talk so we knew something was wrong. He started out by drawing a diagram and showing us the 4 stages of a brain bleed. 1 being not that bad 4 being the worst. After this he proceeds to tell us that she has a grade 3 on one side of her brain and a grade 4 on the other. We were completely devastated. He proceeded to tell us that she would more than likely have some very bad disabilities. Things like Cerebal Palsy, blindness, Mental Retardation, Deafness, ect. He proceeded to say that the brain is a complex thing that they still don't have mapped out so there was no way to tell how she would respond. He said he had seen grade 4 bleeds that caused detrimental effects to where the children could not funtion in normal life and he had seen grade 4 bleeds that you would never know the child had it. So he did leave us with a little hope. He told us that the nurses were going to start measuring her head circumference daily because if started to grow too rapidly that could mean that she had developed Hydrocephalus, which is basically fluid on the brain, which would be caused from the blood blocking the normal fluid drainage pathways. This would mean she would need surgery to put a shunt in her brain. So this was something we worried about daily. We sat in that conference room for the longest time just holding each other and crying. It hit us so hard that this was happening to our little girl. It was one of the hardest things I ever had to hear. We prayed about it and decided that we were gonna trust God and have faith that everything would be fine.

I'm gonna cut alot of this short cause if I told every single thing we would be here for a LONG time. It was a whole week before we were able to do anything but touch her briefly. After a week Daniel was able to change her diaper and I was able to pick her up, not hold her, but just pick her up long enough for the nurse to change her sheet. She was only on the ventilator for 2 weeks. She has always had amazing lungs. They took her off and put her on a cpap machine which is basically a sleep apnea machine. That was the day we first got to hold our sweet girl. That was the best feeling in the world. I cannot even put into words how we felt. She was so so tiny but so so beautiful. She did really good with that. She stayed on Cpap for about a week and did really well but then she started having trouble again so they had to put her back on the ventilator. We soon found out it was due to the development of hydrocephalus. All within 24 hours we found this out and were told that she would be taken to The Children's hospital in Birmingham, AL. I hurried home to get things together for us to go up there because they said I had time but by the time I got home they called and said they were on their way. So Daniel was the only one that made it to the hospital to see her off. He was able to talk to her some before the put her in the transport bed. He walked her to the helicopter and took some pictures and then watched them take off with her. He called me and could hardly talk he was crying so hard. He said it was soooo hard to watch her leave like that and not be able to go with her. He got to our apartment and we left and went straight to the Children's Hospital and that's where our next phase began. Here are a few pics from Savannah's time in Montgomery.

This is a pic of Savannah right after she was born being taken to the NICU at Baptist East.


This is my sweet girl hooked up to everything.


This just shows how tiny she was.



First time holding my sweet girl.

Being transported to Children's Hospital.