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.
Shawna, I'm planning to do a post of the little ones of the little ones I loved in second grade and would love to include Savannah. Think you could do a post on her in a fall setting? I'd like to use one of your posted photos and then link back to your blog. It'll bring you new traffic and we can see some updated pics on here of that beautiful child!
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