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!!