Thursday, June 30, 2011

Thusday, June 30th

look at all this hair

good morning little one

hi mama!

(andy) first off, i wanted to start today's update with pictures.  a picture says a thousand words, so since i am already at 3,000 words i can probably keep this post short.  second, you will notice i don't use capital letters.  sorry, unless i am being graded i only use caps for the word "Internet" and now "Whitney".   ok, so we woke up in the guest house this morning and went to see Whitney.  she was pretty active this morning.  she was awake and moving around a lot, which is a little different because like her mom she likes to sleep a lot.  she is still breathing on her own, which was awesome because saturday night she was taken off her ventilator for 4-5 hours and was getting too "uncomfortable" and was put back on.  so right now she has been going over 30 hours breathing on her own.  she still has oxygen tubes in her nose giving her extra oxygen.  i don't remember the exact rate that she is getting it, but i will tell you she is getting 25% less today then she was getting last night.  the next hurdle we are going to work on is getting her weened off the oxygen.  i am hoping that will be done in the next couple days.  we also hear she will be getting orders for her first mri on friday or monday, so we are anxiously awaiting the results.  one of the doctors and the nurse practitioner thought it would be a good idea to have sarah try to breast feed her tomorrow.  right now, Whitney is eating sarah's breast milk through a feeding tube.  they are trying to put a pacifier in her mouth to help Whitney connect feeding to sucking.  i personally have not seen much of a sucking motion, but some of the nurses say they have and it doesn't hurt to try.  we will be leaving here in the morning to get to the hospital and meet with a professional milker.  (bad joke, sorry sarah)

one of the doctors came by today and said they have been really excited by Whitney's progress.  she said something along the lines of Whitney is doing a lot of things a baby should be doing at this point.  skeptically i asked - based on what she has been through? or compared to a completely normal newborn?  her reply was normal newborn.....

every day has been better then the last, and i firmly believe all the people praying for her out there is the reason.  from the bottom of our hearts we really want to thank everyone who have reached out to us.  sent flowers, cards, dinners, emails, texts, calls, voicemails......but most importantly prayed for our little girl.  she has been well cared for by all the doctors and nurses at both conway medical center and now mcleod in florence.  we are still cautiously optimistic and the help of everyone has made it easier and easier. thank you

Wednesday, June 29th

Today Andy and I headed to McLeod after dinner and plan to stay at the McLeod Guest House. A program they offer to let out of town visitors stay overnight for a greatly reduced rate. The rooms are clean and right across the road from the hospital. It reminds us of staying at our grandparents house when we were young.

On our way to the hospital we get a call saying Whitney is off her ventilator! We are so proud and can't wait to get there to see her.
When we arrive she looks SO GREAT, there is no more tube and tape across her face. We can see her little mouth for the first time.

We were able to dress Whitney in her "party dress" and hold her above her bed. This was the second time we got to hold her and it feels SO GOOD. She is BEAUTIFUL!
Whitney had her eyes open for a good amount of time tonight and was moving her arms and legs even more than the day before. Her bruised arm is looking better every day. She now has an IV in her left arm, but she doesn't seem to mind. She is also eating milk through a tube and gets very sleepy after feeding time. She eats about every three hours, but since she is such a big girl they are going to try feeding her every 2 hours.
She has some congestion in her lungs and she is coughing slightly to help break that up. They are also placing her on her stomach to help aid in breaking up that congestion.

Whitney is still on a bit of oxygen and the next step is to ween her off of that. Andy was also able to help change her diaper.
When we left around 11:30 pm she was snug in some cozy pajamas and we read her her first bedtime story, Puppy Love (since Tilly couldn't be there to see her...)

Andy and I cannot even begin to thank EVERYONE who has sent gifts,  prayers and thoughts to our family. The out pouring of love is overwhelming and much needed. I cannot even begin to think about all the support without crying. We have a long, long journey ahead of us and each and every prayer and warm wish really goes a long way. Thank you, thank you, THANK YOU, for all the support and please keep it coming.

Tuesday, June 28th

The nurses at McLeod are truly angels here on Earth. From the second day Whitney was admitted to the NICU there were two adorable little outfits hanging by her bedside. Either donated or bought by the nurses who attend to her they were ready and waiting to be tried on by Whitney.
When we arrived on Wednesday with my parents we were were feeling so good after the "high" from Monday and getting to hold her we couldn't imagine another day that could be so, dare I say, fun?
Andy and I were informed she would be debuting as a ballerina today and we were so giddy with excitement. Whitney was able to get dressed in her first outfit, a little onesie ballerina outfit from her nurse Claire. She was the NICU showstopper and breaking hearts already.
It was great for Grandma and Grandpa to see her all dressed up in first little outfit too, I was so glad they were able to be there to see this.

We were also there when it was time to change her bedding so Andy was able to lift her off her bed and hold her while the nurses changed her sheets and blankets. Any little time we get to pick her up is a big milestone and feels SO good. I was a bit jealous, but Andy seems more sure of himself picking her up than I do and he did a fine job.

Whitney is still on the ventilator and needs to ween herself off of it before they can run any CT Scans or MRI's. She is a strong little baby and getting stronger every day, but the next step is to get off the ventilator and start breathing completely on her own. She did however lose one cord that was going down her belly button to check her blood pressure. That was removed and they are able to check her blood pressure now with a small cuff. It was nice to see one less cord running out of her.

She was also moving her arms and legs much more today. Her arm is still very brusied from the difficult birth but she has been able to stretch and move it more and more. Her legs have been stiff, but the more she "thaws" they become more loose. It's great to see her moving her arms and legs. The exact thing that we were praying for.

Wednesday, June 29, 2011

Monday, June 27th

Whitney has “warmed up” and receives her second EEG test to compare brain waves from the first test performed on Saturday while cooled, versus her warmed test.
She remains on her ventilator to help in breathing, but doesn’t need much assistance.
When Andy and I see her today she looks so good, her skin is pink and she is WARM to the touch, just like a baby should be. She is pretty sleepy today, probably enjoying being warm, but she opens her eyes every now and then. We are able to rub her back, tickle her feet and stroke her arms.

We were also able to hold our baby girl today for the first time. It was such a wonderful, exciting and emotional time to hold her for the first time. Words cannot express what it felt like to hold that little darling little girl. After 4 days of hell and back again it was probably the best day of my life and when looking back probably will never be able to without crying.

At 6:00 PM we met with the infant neurologist. He was briefed by the nurse on her situation and birth story and then performed several reflex tests; clapping in front of her face, stroking the bottom of her foot, stroking her palms and a pupil dialation test. After the tests he explained he thought she was responding adequately and remained optimistic. After he left the nurse told us that we should be very  happy with his feedback, for she has heard him first hand give feedback that was not so positive.
Andy and I left the hospital feeling so grateful. She has come so far in such a few days and she is still hanging on and fighting. When I called my parents who were back at the house they said they could even tell the excitement in our voices. We really, really needed a day like this to lift our spirits and praise God that our little girl was in such great hands and holding on.

Sunday, June 26th

I am released from the hospital around 8:00 AM and Andy and I head home. We take a quick nap and then head to McLeod with my parents. I am so excited to finally see my baby girl and grandma gets to meet her too!
It was so wonderful to meet my daughter. We had special instructions that we were unable to stroke any part of her, but rather just touch her skin. They wanted to keep her as unstimulated as possible while cooling.  It was so hard not to snuggle and kiss and warm her. She just felt so cool to the touch, but we knew this treatment was the best thing for her.
At this point they have planned to start “warming” Whitney at midnight, it will take 6 hours to get her back to her core temperature. The infant neurologist is also planned to meet with us tomorrow. We were also able to change her diaper today. (She has been having good both dirty and wet diapers from the beginning)

Saturday, June 25th

(Sarah) My parents arrive today around 3:00 at the Conway Hospital. It was so wonderful to have them there, Andy and I really needed their support. Andy had stayed with me the entire time and now with my parents here him and my Dad left for McLeod to see Whitney while my Mom stayed with me.
When Andy arrived to see her we were able to Skype from his phone to the IPad we had in my hospital room. It was SO WONDERFUL to see her, even if it was via Skype. As soon as I talked to her, she opened her eyes, it was incredible and heartwarming.
She also was strong enough to go off her ventilator for 4 hours today. She then became too agitated so they decided to put her back on the ventilator for support.

(Andy) Roger and I drove to Florence Saturday night to see Whitney.  Before coming I asked the nurses what to expect to see so I could prepare myself for wires, tubes, complexion, etc…  I was told prior to getting there that she was blue in tint from being so cold.  Also to not stimulate her too much and they couldn’t wash her hair yet from birth. 
When I did see her I was overjoyed, her color looked fine to me, her hair was cleaned up mostly, I remember my first thought was how “normal” she looked.  She even had a little pink bow in her hair which made her look sooooo cute.  I skyped Sarah from my phone to the IPadI left in her hospital room.  Seeing Sarah’s face as she saw Whitney was priceless, and when Whitney’s eyes opened up immediately once she heard Sarah talk to her was amazing.  It has been one of the most memorable/amazing moments in my life.

Friday, June 24th

Whitney remains on the cooling blanket and the questions start rolling in. After talking with both my doctors and the pediatrician they are at a complete loss for when or how this happened. All signs leading up to the c-section were normal. After reading both the cord blood readings and another blood test they all show normal. The cord blood test would show when there was a lack of oxygen to the baby, however it shows there was no loss, which we know is not accurate. A medical mystery.

At this point Whitney is cooled to 92-93 degrees and sedated. An EEG is also performed. This is a test that monitors her brain waves and brain activity.

Thursday, June 23rd - Welcome to the world Whitney Renee White

(Sarah)I had a scheduled induction for June 23rd and had orders to arrive at the hospital by 5:00 AM. Andy and I arrived at the hospital very excited to finally meet our baby and find out whether it was a boy or a girl.

The entire day of labor the nurses and doctors were monitoring baby’s heartbeat and everything was normal. After dilating to 10cm it was time to start pushing. After pushing for about 3 hours she was not progressing down any further, however still maintaining a good heart rate. It was then decided to proceed to a c-section. After about 45 minutes of prep work it was time for the surgery.

During the surgery there is no way to monitor the baby’s heartbeat but prior to entering the surgery all was still normal. We were told the baby was very far down in the birth canal it was a struggle to get her up and out. It required two doctors to push and pull her out, and when she came out she did not have a heartbeat. The entire surgery lasted 15 minutes, but there is no way of telling when her heart had stopped.
Once Whitney entered the world she was brought to a room in which 5 doctors and nurses were working on her doing chest compression and intubated her to help her breathe,  and gave medication to jump start her heart. After 19 minutes her heart started beating.
It was decided she needed to be transported to McLeod Hospital in Florence, SC. They have a great NICU facility and it was planned to put her on a “cooling blanket”, which is new technology in the last 10 years. The cooling blanket is intended to lower an infant’s body temperature to slow brain activity and prevent seizure activity; they are placed on the cooler for 72 hours.

Whitney was placed on the cooling blanket as soon as she arrived at McLeod.

We DID have a baby girl though, Whitney Renee White. 7 pounds 7 ounces and 21 inches long

(Andy)  I was in the operating room holding Sarah’s hand during the c-section.  There was definitely more of a struggle to get baby Whitney out then what I had seen in our birthing class.  At the time I thought everything was going ok though.  When Whitney was born Sarah and I both swear we heard her cry.  We looked at each other and said “That’s our baby”.  We then were told she was a girl and we were both overjoyed.  (I had been dreaming of and predicting a girl for a while)  In hindsight I should have known something wasn’t quite right.  I remember hearing the doctor say to prep the room.  If everything was going as planned a necessary “room” would have already been prepped.  We also did not get to see Whitney after the birth, even though we were told months ago we would if a c-section was needed.
After birth, I got to stay with Sarah for about 10 minutes and they said it was time to go back to the room and wait for Sarah and baby Whitney to join me.  I was up there for about 30 minutes before a nurse came to get me with a very concerned look on her face.  She didn’t tell me much; I just remember walking very fast to a dim lit hallway where I met our pediatrician for the first time.  It was him and a nurse who explained to me that she was born with no heartbeat and it took a long time to establish one. 
He explained she would be at a very high risk of brain damage and possibly not surviving at all.  Pryor to having the baby, Sarah had to pick a local pediatrician from a list of 6.  We had no clue who to pick, so she went with the one name she recognized that a friend of hers uses and recommends.  I believe this was God’s will helping her choose.  The pediatrician was calm and soothing and very informative.  He explained the seriousness of this, but also explained how resilient babies are and when he left I was feeling cautiously optimistic. 
The pediatrician, the delivering doctor, and I all went into the next room to explain the situation to Sarah.  Even though I could barely get it out, I felt she needed to hear it from me and not them.  After  10-20 minutes we were able to go to another room where Whitney had a team of people tending to her.  It was the first time we saw our beautiful girl.  My emotions of this moment cannot be described in a blog….  We were then taken back our room.  Looking back, I have very little recollection of getting there.  I just remember it was the first time Sarah and I had been alone and was truly able to comfort each other.  A couple hours later, nurses from McLeod Hospital showed up and wheeled Whitney in one last time to see her that night before she was taken to Florence. 
Friends and family,
As most of you know by now our baby girl, Whitney Renee White, entered this world much harder than most newborns. . We apologize for not updating everyone personally, but this has been an extremely hard time for both Andy and I. This blog should be a great way for everyone that is interested to stay abreast to Whitney’s progress.