Friday, July 29, 2011

Doctor's appointment

Whitney’s morning appointment with the pediatrician went well today. She grew a quarter of an inch from last week, but unfortunately didn’t gain any weight. The doctor was not concerned one bit though and said 11 ounces over two weeks is very good. Since she didn’t eat before the appointment she was hungry and wide awake. This was actually a good thing because the doctor could finally see her awake and moving around. He said numerous times how happy he was with how good she looked, he was really proud of her. She was kicking and moving her arms and legs, tracking with her eyes and even let out a cry when he was “annoying” her.
We are now moving up to 4 ounces every 4 hours and will have her next appointment in two weeks rather than every week.
She continues to eat and sleep very well. The last three nights she has been sleeping 5-6 hours at night, what a blessing. Her monitor has not gone off either. I am still in awe over this girls progress, she truly is such a fighter. To see how far she has come in just over a month is incredible, I love her so much. We are so proud to call her our daughter and every little milestone means more than the world to us. We are so blessed to have her in our life.

Thursday, July 28, 2011

Picture time

Andy had off of work today so we tried to make the most of the day and get outside and also head to the new SkyWheel on the beach. I was there when my parents were in town but Whitney and I did not go on,since I wanted to wait to go with Andy.
The day was fun filled (Whitney slept through it all!) of going to the SkyWheel, eating at Bumsteads/Dagwoods, going to Costco and hitting up the pool this evening. We brought our nice camera along down to the beach and Andy was able to capture some great pictures that I'll share with with you all.
Tomorrow is another pediatrician appointment for Whitney. I'm excited to see what her weight gain is and to check her progress, we'll be sure to let everyone know. And don't worry, Whitney was covered from the sun the whole day, except for the few photos we took her out of her car seat for!

Tuesday, July 26, 2011

Grandma is coming to visit

Andy's Mom is arriving today for a 2-week visit with us. I talked with her yesterday and it sure sounds like she is excited to get her little hands all over Whitney, and also see our house since they didn't get the chance to come last summer. Whitney is the first granddaughter for Julie and Larry, Andy's sister has 3 boys.

These past few days that Andy and I had with Whitney by ourselves has been wonderful, I really enjoyed my time with her. She has stolen our hearts and refuses to give them back. She continues to eat and sleep very well, and has kept up her "night owl" status. I have noticed the past two nights though she seems to be more awake during the day, so it's become a bit more easy for her to fall asleep at night. The last two nights I've also not set my alarm to get up and check on her. She is now making enough noise (not screaming yet) to wake me from my deep slumber and check on her and feed her.
As for crying, she is stringing together four or five squeals at once, which to me is pretty much crying, I'm not worried about THAT anymore.

I'm also excited that I have somewhat come in contact with a family who also has a graduate of the cooling blanket. Andy stumbled across their story when Whitney was on the blanket since we didn't know much about the procedure and were trying to get more information. Their story is very uplifting and encouraging and the birth story is very, very similar to Whitney's. I really want to get in touch with the mother (Christy, if you are reading this, how can we exchange emails?) to learn more about their daughter's progress. It would be great to talk with someone who is all too familiar with what we are experiencing.

I'll let you now with a few of our favorite pictures from the last few days.

Saturday, July 23, 2011

Happy one month birthday!

Whitney is one month old today, it is so hard to believe. Since she has only been home for almost two weeks she doesn’t seem that old, but the calendar doesn’t lie. She is getting so strong and has kept most of her hair (although now we are dealing with cradle cap), and she continues to eat really well.

Yesterday Whitney had her second doctor’s appointment with her pediatrician to basically see how she checked out this past week with weight gain. I was pleasantly surprised to find out she gained 11 ounces this past week, which puts her up to 7 pounds 14 ounces. The doctor said she is probably just making up for lost time and not to worry about the gain, in fact it is a good thing. I think all mothers of newborns can commiserate on the wonder of if their child is getting enough to eat. Whitney seems to be hungry all the time, however with her weight gain I guess it is confirmation that she is truly getting enough. We have another appointment scheduled for next week and if everything goes well then, we will probably be able to start going every two weeks rather than every week.

I have kept her off her monitor during the day which I really enjoy. It’s a bit easier when I’m by myself to be more mobile with her and free to move throughout the house. We always hook her up at night for sleeping, but for days with doctors appointments or shopping or running errands I’ve found it to be much easier to be “Wi-Fi” and one less thing you have to keep up with. So far the monitor has not gone off (knock on wood) except for parent error which I already talked about.

Whitney is most certainly finding her lungs. I suspect she will be full on crying in the next few days, so I’m trying to enjoy this time as much as possible. I hope she continues to be a patient, content baby and keeps those lungs to herself, I don’t need to hear them anymore, I believe her, she is able to cry.

Thursday, July 21, 2011

Saying goodbye

Yesterday morning my parents headed back to Wisconsin after being with us for almost one month.for those of you who know me, you know I am a pretty emotional person without the hormone shift that goes along with pregnancy, so you can only imagine how emotional it was for me to say goodbye to them especially with me being a huge ball of emotions right now.

I have always had a great relationship with my parents (something I hope Whitney can say about us someday...) and it was such a blessing to have them here with us during this stressful time. Their love and support through this all can not be put into words. It just goes to show you never stop being a parent. It is always hard to say goodbye but this day was especially difficult.

Whitney has begun to find her lungs, letting out more and more squeaks which are sounding more like cries. They are still cute but I'm sure in a few days they will lose their luster. She is still being a really good, patient baby. Today Andy and I were out running errands for a few hours after my doctor appt. And she was so content and basically slept the entire time. She continues stay wide awake late into the evening and usually won't fall asleep until 1am.

I will post more pictures tomorrow as I'm on the iPad right now and also give an update as to how her Doctor appointment goes. But for now, just one more Thank You to my parents for always being there for us, for being so patient and loving and just lending a listening ear. We love you guys!

Tuesday, July 19, 2011

Look out Daddy

Today was our last full day with my Mom and Dad, I'll go into details of our day at a later time but I just wanted to share this picture.
While Andy and Dad were out on a fishing trip, us girls did a little shopping. Whitney picked out her first Coach purse, but I explained she was a tad young, maybe when she turns 13!

Monday, July 18, 2011

Strength (the physical kind) and believing

Today I got my first lesson in believing in my child. Well, I technically shouldn't say first, I have always believed in her, but read on...

Whitney seems to have created a routine of eating and sleeping all day and then staying nice and wide awake around 8:00 pm to 12:00 am. Since we are night owls ourselves this hasn't become too much of a problem and it may just be a coincidence these last few nights. Regardless, tonight we were working on some exercises the doctors advised us to do and since she was awake and alert doing them at night is a great time. She was getting some classic "tummy time" where she lays on her stomach with hopes that she can strengthen her neck muscles and lift and move her head from side to side.

As my Mom and I set her on her stomach she looked so comfortable and content to just lay with her head to the side. I even said out loud, "I just don't see her having the strength to lift her head up and move it to the other side."

Well she already has me eating my words. Within a few minutes she was lifting her head up and sure enough, turned it to the other side. Mom and I were so happy for her, tears of joy streaming down our faces. I felt horrible for not believing in her more. The doctors told me to never treat her like an injured baby which I really really need to remember. I should not be surprised by her, these past three weeks she has been so strong, but tonight I got to actually see her in action.

Shortly after her first head turn she really just started showing off. Turning from side to side frequently and with more a gusto. We were so proud. Each day she is getting stronger, including her voice box (yikes!) and seeing her tonight with that small head turn just makes my heart burst with joy. Maybe it's the hormones, or maybe it's part of being a Mom, but I just love this girl so much and she has already taught us so much, to have our hearts and minds be strong...each and every day.

Sunday, July 17, 2011

Whitney's adventures at home

It doesn't seem like Whitney has been home for almost 6 days already, we have been having so much fun together. She has been such a content baby it makes it so easy to take her out of the house and do things, unfortunately when the heat index is over 100 degrees going outside is anything but easy. Luckily the last few days the heat has subsided and we were left with beautiful days and cooler evenings and mornings to enjoy.

On Friday was Whitney's first pediatric appointment. Since Andy had to work, my Mom went with us and we were so excited for Dr. Malloney to see Whitney again. The first and only time he saw her was the night she was born and she has come so far since then. He had been keeping tabs on her while she was at McLeod but for him to finally see her was exciting. He was loving on her and kissing her, it was great to see him so involved in her life already. She truly is a miracle and he saw her through it, we couldn't be happier with him.

That evening the heat snapped and we were able to take Whitney out for a ride around the culdesac to meet the neighbors. It was great to get her outside and introduce her to her Myrtle Beach "family", we are so lucky to have such wonderful neighbors who we now call friends.

On Saturday the three generations, my Mom, me and Whitney went shopping for a few hours. She was so good and only bought stuff that was on sale, I guess I taught her well! But really, she sat in her car seat really good and the monitor never went off, thank goodness. It was surprising how well she did since we were really moving her around so much from shopping cart, to the car, to shopping cart etc. Her strength seems to improve everyday which makes me so proud.
We also made our first trip to the beach on Saturday night. We went with Mom and Dad down to the boardwalk and watched them go on the SkyWheel. There was a band playing and lots of noise and people, but of course, slept right through it.

Sunday, July 17th was a big day for Whitney, her baptism! We were busy almost all day but she did so good. We went to 11:00 church service which was followed by the baptism at 12:30. After baptism we had a cookout and so many of our friends and neighbors came, it was just wonderful. We are so very lucky to have have such great people in our lives and knowing that Whitney will become part of their lives too is especially exciting. For her to know she is so loved by so many people is just great. Andy and I have always tried to surround ourselves with good people and want the same for Whitney. God has blessed us with amazing family and friends and now a baby girl to share with them.

Thursday, July 14, 2011

Welcome Home!

It feels SO WONDERFUL to having our baby girl HOME. Just typing that makes my heart jump for joy. I just need to type it again, our baby girl is HOME.

On Monday, July 11th Andy and I headed back to McLeod to try our "overnight" stay with Whitney once again. We could tell immediately that this night would be different than the last, since the nurses practically wheeled Whitney into our room as soon as we arrived. We were told she passed her second car seat test the night before so there would be no need for a car bed (yay!) and if she did well while staying the night with us she would be cleared to go home in the morning.

A representative came by and showed us how to use the apnea monitor and got that set up on Whitney. The monitor isn't nearly as bad as we were thinking and it really does give peace of mind. It is about the size of a shoebox and is very portable and easy to move throughout the house. An ear piercing alarm goes off if her heart rate gets too high, or low, as well as if she stops breathing. The alarm also likes to go off if Mom and Dad forget to plug it in and it gets low on battery, or if she is too wiggly and one of the electrodes falls off. So far only the latter has happened and she seems to be doing great.

Once the nurses left us alone it was a pretty surreal moment. Andy and I alone with this little girl, what do we do now??? The first night there was really easy and she was so good. We probably only woke up 10 times to check on her (hahaha) The worst part about the stay was having to watch a Shaking Baby movie (how horrible) but we also got to learn about CPR and practice on some test babies. The babies were in a bag and Andy got his taste on what it would be like to have triplets!

The night went fine so the doctors and nurses were OK with sending her home. We were released around noon on Tuesday and almost sprinted out of the hospital, we're free! Whitney's doctor couldn't stress enough how good she looked. He reminded us of something he told us 2 weeks ago...regardless of what all the tests and results may say, one of the best ways to judge how a baby will do later on in life with a brain injury is how they look at the time of going home. He said if someone were to be walking through the NICU and saw her, they would wonder why she was there, she looks like nothing had happened to her. She was doing and reacting just like a term baby should, we were so proud of her. Another nurse said she never would have thought Whitney's progress would happen as quickly as it did. She admitted that she would have expected her to go home with a feeding tube and many more monitors and didnt expect her to be feeding as good as she was.

So needless to say, after the exhausting few weeks it really did feel great to have her in our car and on our way home.
She has been such a content little baby so far. Andy and I have yet to hear her cry, but the doctors and nurses reassure us they have heard her and it is nothing for us to be worried about. Each day her "squeaks" get louder and louder though, so I'm trying to enjoy this quiet time as much as possible, because I think she'll get her lungs in the next few days. With her not crying it has caused a bit of stress on reading her needs and wants. Since she is so content we are just guessing right now on when she is hungry etc. She does show lots of signs of hunger and needing burping etc, but it's unusual to not hear her crying cues.

We cannot express how proud we are of Whitney and how well she has done in these past few days. The love and support from our families, friends, coworkers and so many others has been remarkable. I do believe all the prayers have made a positive impact and cannot thank everyone enough. We always knew she was a miracle but seeing now what she has gone through and the fact that she is home and doing so well really makes that miracle so much stronger.

Tuesday, July 12, 2011

She's Home!

(andy)  i will let sarah write an actual blog with lots of details and pictures tomorrow.  tonight we just wanted to let everyone know we left the mcleod hospital in florence, sc with our beautiful baby daughter and got home this afternoon.  she is doing so well.  she passed her most recent car seat test and rode in her normal car seat.  she is on a monitor, but it's just 2 electrodes on her chest that go to a little portable machine that would beep if she stopped breathing or her heartbeat dropped or raises too high.  so far it hasn't gone off  ( except for when i sat on it and pulled the cables)  there will be more info to come.

we also wanted to give a huge thank you to all the nurses and doctors @ mcleod nicu and conway medical center.  from Whitney having 1 nurse all to her self to being shared, everyone at both hospitals went above the call of duty.  i feel like sarah and i made some good friends in the hospitals over the last 3 weeks.  we owe these people everything.   thank you

Sunday, July 10, 2011

Sunday, July 10th

For those of you who are friends of ours on Facebook you may already know this, but if not, Whitney was NOT able to come home today (insert tears, sighs, frustration here)

When Andy and I arrived at the NICU yesterday we were placed in their "parent room" prepared to have Whitney wheeled in by us and would be able to watch her/take care of her in our "room" for the night. She would still be hooked up to her monitors so the nurses could see how she was doing, but for the most part the feedings, diaper changes etc, would be taken care of by us.

She first had to take a "car seat test", which is is usually given to preemies before they can leave the hospital. The baby is placed in their car seat for 1.5 hours with monitors attached to see if their heart rate or oxygen decreases. Since the babies are usually laying on their backs and in the car seat they are at a 45 degree angle they want to make sure they have enough tone to support themselves and their body can regulate the change.

Unfortunately Whitney did not pass the test and the nurse said her breathing rate dropped below the acceptable number. This was the first time her breathing had dropped that low and the doctors aren't sure if it was just a fluke or something to be of concern. Since they are not sure, they advised us they would like to keep her for another 24 hours. They said we should go home tonight and get a good nights sleep (yeah right) and come back tomorrow and plan on staying in the parent room tomorrow night with her and hopefully go home on Tuesday.
Since she had this breathing episode they also think she may have to come home in a car bed, rather than her car seat. The car bed is just as it sounds, a bed that she can lay down in rather than sitting up. They also want to send her home with a breathing monitor that she would wear for about a month to monitor her breathing. An alarm would go off (scary!) if her breathing would drop below a certain level.

Andy and I were obviously frustrated today since we were SO excited to bring her home. We went from thinking she was coming home cord free to now coming home in a bed (who does that??) and being hooked up to a monitor for a month. I know this is the best for her and we would rather her be good and ready to come home and her be safe while she is home, but it's still so hard. The inconvenience having to drive back to the hospital, another stay, and so much to learn and remember with all these monitors is becoming overwhelming. Andy is supposed to go back to work on Wednesday and my maternity leave is dwindling so we would like to get her here ASAP.
We know the doctors are being extra cautious, which we appreciate. The last thing we want is for something to happen to her while we are home, so we need to remember that this is not a bad thing. In the whole scheme of things, a few days is not going to make a difference. Andy and I keep saying we are on "Whitney Time" and I guess some days she is racing forward and others she just wants to hang out in the NICU a bit longer. We'll wait for you baby day at a time.

Saturday, July 9, 2011

Saturday, July 9th

(andy)  just a quick update with awesome news!  the hospital called this morning, she had a great night last night.  she consistently ate 65-70 ml a feeding, and kept all her stats perfect.  they want us to come tonight and stay over in a little room they have off the nicu.  it has a bed for us and they will wheel Whitney's crib into the room with us.  they expect every thing to go fine and she will be going home with us tomorrow!  she looks so good right now, and sarah and i can't wait to get our little girl home.

more info is on yesterday's blog which we posted this morning with pictures.  i was informed via text messages by a few avid blog followers that we had to get some new ones out.  we will continue to keep everyone updated and thank you everyone from the bottom of our hearts for keeping Whitney in your thoughts and prayers.

Friday, July 8th

(Sarah) WOW, where did the last few days go? Andy received word from his work that he can have a few more days off while Whitney is still in the hospital, he is so grateful since he says he would feel awful working while she is still there. It is a nice help to have him up at the hospital with me to help out and remember what the doctors are talking about and keeping track of all of Whitney's vitals.

When we talked with the nurse this morning she asked us to bring Whitney's bathtub, because she wanted us to give her a bath and all the basins in the NICU are made for preemies so she shouldn't fit. We were thrilled at the chance to give her a bath and couldn't wait to get there.

We had a really great day with her today. When we arrived around 8:30 am I was able to nurse her and she was pretty active and wide awake so we got to hold her and play for a bit. Grandma and Grandpa were FINALLY able to hold her too, which I know was a really special time for them. My Mom has been anxiously and patiently waiting for this opportunity and it was so touching to see her holding her.
The bath time went really well and we were able to see her without any wires or tubes, for they were able to take out her breathing tube in her nose on Thursday. For the first time we were able to pick her up without being connected to a machine or have anything taped to her arm, nose, face, or any other extremity. Andy kept proclaiming "She's WIFI!!!"
After the bath I was able to feed her a bottle and she drank all of that too. She is a slow eater, but steady, the nurses are pleased with her feeding progress. They did however put her feeding tube back in her nose after the bath in case she was too tired to eat for the next feeding. I was really hoping they would try to bottle feed her again and not take the "lazy" way out and tube feed her, but was willing to wait and see how she did.

On the way back to the beach we received a call from one of the nurses saying Whitney had just cried.  This was huge news for us since we have been fretting that she doesn't cry and has only makes "squeak" noises. The nurses assured us her lungs were probably still too tender and sore to cry and that crying takes a lot out of babies and she may just not have the strength to do so.To most parents this will probably sound insane but all we want to do is hear our baby girl cry. Back at the Conway hospital we would listen with envy to the newborns crying through the paper thin walls. At the NICU we hear preemies crying and think "why can't our full term baby do that?" and all we want is to hear WHITNEY crying.

Right before shift change at the hospital I called the nurse to see how her 5:00 feeding went and she said she did great. She drank all her bottle and they did not use the tube (thank goodness!). The nurse talked with the doctor and suggested they try to bottle feed her exclusively and not use the feeding tube. She then explained that if Whitney could continue with her strength of feeding that would be the last step before getting her home. She said for us to call tomorrow before we leave for the hospital because they may want us to pack for an overnight stay and possibly bring her home with us on Sunday! As I heard this news I couldn't help but breakdown in joyous tears. Here I am in some overpriced shop at Broadway at the Beach balling my eyes out talking on the phone with a HUGE smile on my face (great for business I'm sure clerk was thinking). I could not believe the news.
The nurse was sure to mention that if Whitney stalled on her feedings that her trip home could be delayed which we understand, but we are SO CLOSE to getting her home. She is getting so strong and making such progress we are so proud of her she'll be home before we know it.

Hearing the words "She can come home" are the words I have been waiting for, for over 2 weeks now. Even if not on Sunday it will be soon and knowing that it's soon is good enough for me. We have been waiting and wondering and praying and the prayers are being answered. THANK YOU!
When I left for the hospital on June 23rd I never expected any of this to happen. The nursery was ready, the wipes packages were opened, batteries in all the toys. When you come home empty handed it is such a blow. With your mind reeling, you do everything you can to push through and we are so close now.

Baby Whitney has a long way to go and some of our questions may not be answered until years from now. Some of our questions about her birth may never be answered. But the question of when can she come home will be answered shortly and of course, we have to take this just one day at a time.

Wednesday, July 6, 2011

Wednesday, July 6th--Strength-one day at a time

Today we received the most heartfelt package and letter in the mail from a coworker of mine. Enclosed was a bag of bracelets with the same message as the title of this entry, Strength-One day at a time. I cannot think of anything more appropriate for this journey, as each day is filled with joy, feelings of exhaustion and many many questions. Inner and physical strength is something our family, and of course Whitney, are learning on a day by day basis.

Yesterday we all spent almost the entire day at the hospital since we were not there on the 4th. Whitney was moved out of the heat lamp bed to a regular crib and no longer needs her temperature monitored. She still has the feeding tube and oxygen in her nose but her oxygen could possible taken off of her today.

I was able to hold Whitney for almost the entire day and we also were able to try nursing and it went really well. The nurses were very encouraged and excited about how well she did with the coordination of sucking and swallowing. She still receives food from a tube but the fact that she is learning the motions is a big step to getting her home. She does tire out quickly, but with the help of Andy coaxing her jaw she was doing an impressive job. She also is lifting her head up off my chest so we are excited about the strength she is showing.

The doctors also ordered to have her third EEG done and we received preliminary results. The test was showing much improved from the first two but since we are on our way to the hospital now (yay for technology, blogging in the car!) we will know more specifics later tonight when we meet with the doctors. This is obviously wonderful news but we really want to hear from the doctors what the results truly mean, we will certainly be keeping everyone updated.

Andy returns to work tomorrow which really sucks and I know he is really bumming about working while she is away. Hopefully she will be able to come home soon so he can see her on his lunch breaks. Mom and Dad will be going with me to the hospital though so I don't have to go by myself, they have been a great help! All the prayers and well wishes have been great, really amazing, thank you all so much!!!

Each day is truly a testament of strength, one day at a time.

Monday, July 4, 2011

Monday, July 4th

(andy)  happy 4th of july!  we have been to the hospital everyday since Whitney was born.  we decided not to go today just because of all the crazy 4th of july traffic in the myrtle beach area.  we woke up early this morning around 5am to get an update.  we got some good news, she had been taken out of the bed she was in that had a heat lamp warmer keeping her warm.  she is now in a crib and wearing an outfit and snuggled in a blanket and staying warm all by herself.  she must take after her dad because her mommy is alway cold.  we found out that she was also digesting her food much better.  they were pulling very little of the 15ml an hour they were giving her out of her stomach.  so this was great news to start our 4th of july.  

we called the nicu @ mcleod one more time about 20 mins ago and got even more good news.  apparently when the occupational therapist came around this morning to work with her, they tried bottle feeding.  Success!  she drank 5ml on her very own before she tired out a little.  not too bad in my opinion though seeing how this was the very first time she has ate on her own.  they also upped her feedings to 25ml and she is digesting just about all of it.  so at this point she is eating almost 25ml every 3 hours.  they have not tried the bottle since this morning, but when we get there in the morning tomorrow they said if every thing goes good they will try letting sarah breast feed for the first time.  they will also be doing a EEG in the morning to monitor her brain activity.  1 EEG was done shortly after arriving to the florence hospital, the 2nd was done right after they "thawed" her out from her cooling treatment.  both showed burst suppressions, but the neurologist said this was to be expected.  i am really hoping this next one has some better results, and i think it will.

i had no new pictures of her to post this morning, so i decided to post a pic of a new shelf sarah's dad helped me hang in her room.  we hope everyone has a great 4th and if you are in the myrtle beach area, text us.  we will be going to the beach to watch the fireworks.

Sunday, July 3, 2011

Saturday 2nd / Sunday, July 3rd - Handing it over to God

(Sarah) I have been in a bit of hiatus lately and let Andy take over the updating. He does such a great job digesting all the information we receive from the doctors and nurses it only seems right for him to do the updating. He has a knack for following the numbers on the monitors and remembering what they are each day, where as I am either ecstatic for progress or weepy for setbacks regardless of what the numbers represent.

We drove to Florence Saturday afternoon and made plans to stay in the guest house again Saturday evening. We realized we enjoy going the NICU late at night since the saying “when the cats away the mice will play” sort of takes effect. It’s quiet and relaxing, and the nurses seem more relaxed and willing to “play”. However, when we go during the day, the doctors are there and it’s always nice to get their analysis of her recovery first hand.

Saturday night our nurse introduced me to “kangaroo care” which she suggested we start doing. It basically is skin on skin contact for me and Whitney. Apparently a mother’s body temperature will regulate and adjust to keep the baby warm when being held close skin on skin. This has shown benefits for the baby (and sure makes ME happy) not only for bonding but for healing and developmental progress as well. Each day we are there I should at least get one hour of the “care” which makes Andy jealous, but I’m sure to give him some time cuddling and holding Whitney too.

After the news from the doctor regarding the MRI results I was obviously shaken (hence the hiatus). As Andy said, given her horrible start the news should not have come as a surprise, but rather a blessing it was as positive as it was, it could have been MUCH worse. I however, took the gut wrenching news horribly. The news, coupled with lack of sleep and a week of roller coaster emotions (and bumper to bumper 4th of July traffic getting back home) did not work out too well for me. I was/am heartbroken and finally had to turn “this” over to God. I do not know his plan for Whitney, but Andy and I have come to accept whatever it may be. I know there will be bad days, horrible days, good days and thrilling days and we need to be prepared for all of them. She has made it this far and is doing SO good, we can only hope and pray and yes, continue to be cautiously optimistic

As for updates from Saturday night and Sunday morning. First off they started using a different device to break up the congestion in her right lung and had much success. They’ve done a couple XRays and the congestion has gotten much better, which has been helping her breathing. When we left on Sunday they had just turned down her oxygen levels and slowed the rate she was receiving oxygen, she is now getting very little and breathing basically completely on her own.
She is still having difficulty digesting her food. Before each feeding, they check to see if any remains from the previous feeding are still in her tummy and this seems really hit or miss. Sometimes she completely digests her milk, other times she has around half remaining. The doctors are hoping this gets better, but are trying different feeding schedules and amounts of food being administered to help this along.
Andy and I did see for the first time her ability to suck on the pacifier. In the past she really didn’t show an interest in it, but today she was sucking on it really good. We are optimistic this motion will help her when the time comes to feed from a bottle or nurse. We never did get to try the breastfeeding earlier in the week, the doctors thought she just wasn’t strong enough yet, which Andy and I agreed.

We did receive one startling fact that we were not aware of from the doctor. He explained the night of her birth when the Conway nurses/doctors were doing the chest compressions and reviving her they were going to stop after 20 minutes. Whitney started breathing on her own at 19 minutes, they were going to stop at 20 minutes.  Just typing this makes me cry and my heart hurt and burst at the same time. This baby,  this perfectly healthy baby who lived inside of me for 9 months almost didn’t make it, one minute away. She beat the odds, she fought through. The first miracle of many.

Saturday, July 2, 2011

Saturday, July 2nd

when we got to see Whitney yesterday morning she looked great.  her eyes were wide open, she was awake and moving around a lot.  it was the best we had seen her.  one of her doctors came in and talked to us and said he was going to order an mri to be done.  shortly later she was given a sedative to keep her calm during the mri.  when the results came back, the doctor said the radiologist had seen some moderate brain damage.  he put this on a scale of mild to moderate to severe to profound.  he wanted to make sure we knew it wasn't "normal"  which is a word sarah and i are becoming to resent more and more.  he did say that even though there were some damaged areas, a babies brain can shut down damaged areas and use other areas that may have normally went unused.

one doctor did say that sometimes in these situations you have to use the "look" test and judge them more by how they look and how they are moving vs. what a brain scan says.  we don't know what to think.  there will be another mri ordered in about 2 months to further monitor Whitney.  i do know she looks better everyday.  we are going to see her tonight, stay the night in the hospital's guest house and spend some more time with her tomorrow.