Discharge Update

Well we are not  going home this weekend.  Emma did gain weight last night, but it was still just a small amount.  They said she could go home today, but they just aren't comfortable until she gains a bit more weight.  With that in mind, she will be eating on her own cues with supplemental feedings from midnight to 8 am with her feeds.  That way they should get her to gain weight and be ahead of the game.  So now the discharge plan is for us to leave on Monday.  Jason and I are both a bundle full of emotions as we try and process getting our hopes up and having them crash down.  Please pray for all of us as we work on getting our baby girl home with us.

Quick Updates from the last 2 days

Sorry it has taken so long to update but we have been busy spending time at the hospital working on Emma with her feedings.  They changed her milk fortifier from 22 to 24 which allows for her to get more calories, but allows for her to take in less volume.  The big thing is she needs to eat and gain weight.  Jason and I were at the hospital yesterday(Wednesday) from 7:00 am to 11:00 pm only leaving 2 times and that was to go to the cafeteria for lunch and dinner for 30 minutes.  We are very dedicated at getting this eating thing down.  She did not do well eating for her nurse overnight.  This lead to the doctor to decide for us to room in with Emma tonight (Thursday).  Rooming in consists of us staying in a "hotel" style room located in the NICU.  Emma is still hooked up to her monitors, but only the nurses outside the room can see her stats.  This is another big and scary step for Daddy and I.  She is already doing much better eating at night being with Daddy and I.  There is talk that if she continues to eat well for us and gain weight that we might get to go home this weekend.  Please pray for our family that our first overnight together(we had to wait 4 weeks for this to happen) and Emma's feedings continue t go well.  May God Bless All of You! We will update about our first night tomorrow.

Just a Quick Update

Emma had a great day feeding wise.  Last night for her nurse she took 52 of the 63 ml that she needs to take.  She took 40 and 30 a couple other times during the night.  Today we had speech again with Lawson and she informed Emma that it was boot camp time now.  We spent her feeding switching between different bottles and nipples to try and figure out which one she like the best.  By the end of the feeding she had taken about 43 ml.  Then Daddy and I were determined to help her get the light bulb to go off.  With both of us working with her we were able to get her to take 57 ml.  It actually brought us both to tears that she only had 6 ml that had to be put into the pump.  The also made the decision to add a human milk fortifier to the breast milk to help increase the calories.  Right now Emma is falling in the 3rd percentile and they should actually increase the volume she needs to eat, but since that is already a challenge they went with the milk fortifier.

Emma also came off of her methadone today.  She should of gotten a dose at 5:00 pm but the decided to just stop giving it to her.  We are hoping that this change also helps with her eating.  Jason and I plan on asking if we can feed her on her own hunger cues tomorrow rather than their strict every 3 hour schedule.  She was actually hungry at 6pm tonight and had to wait to 8pm to eat so she tired herself out by the 8pm scheduled feeding and only took 40 ml.

Tonight Emma has her car seat challenge.  This is normally only done with preemies, but since Emma only has half a lung on her left side they need to see how she will do in a car seat.  She will sit in her car seat for 2 hours and the nurse will make notes on how she responds every 15 minutes.  They are also lowering her bassinet back to the flat position since she has not spit up in quite a few days to see if she can now lay flat.  We are sad to see her nurse Lynn leave after tonight.  We have had her every night since Emma made the transition to E Pod.  She has been very helpful with Jason and I and offered us lots of great advice.  

Keep up those prayers!!! God Bless All of You!!!

25 Days

Dear Emma,

The minute we found out you were going to be added to our family we knew our lives were going to change.  My pregnancy quickly passed by and before we knew it we found out we were going to add another little girl to our family.  Daddy wondered how he would survive in a house with 2 daughters and I couldn't wait to start buying pink stuff.  Regardless we both were over the moon that things were going so well.  We had waited so long to add to our family and felt blessed it had finally happened.  

The day you were born, our lives changed and they changed in a matter of minutes.  You were taken to the nursery for a little extra oxygen.  Only problem was they didn't bring you back to us.  Instead they brought news that you had to be rushed to UVA to the NICU.  Mommy cried and asked "Why us?" and "What did I do wrong?" and Daddy stayed strong to hold his emotions in to be there for me.  They let us go to the nursery to see you and emotions took over both of us.  You were beautiful and the spitting image of your big sister.  The tubes and machines got the best of Mommy and life seemed so fragile at this point.  Next thing we knew you were in the incubator and getting ready to be transported to UVA.  

Once at UVA it was determined you would need surgery.  We then waited a week for surgery and then waited an eternity for the surgery to be completed.  You came out like a star and recovered amazingly.  You recently moved from A Pod(where the sicker babies are located) to E Pod(where the babies with minimal support are located).  We rolled your bassinet over there and everyone cheered as you passed.  You had your first graduation - A NICU Graduate.  Daddy and I had such anxiety about you moving, but learned that you would continue to be a star in E Pod.

Now we are faced with the challenges of feedings.  You are putting forth all you can, but the feedings are just winning.  At this point the feedings are all that hold you from going home.  We keep telling you that while the NICU is nice, our house isn't half bad either.  All day everyday we continue to pray that one day you will show us all that you can take the entire feeding by mouth.

Today in reading an article I was hit with the realization that you fall in that CDH Survior category with all of the other babies who survived being born with CDH.  I thank God that you are a survivor.  I also have complete faith that God blessed Daddy and I with you for a reason.  We think that it might be to gain one more family to be advocated for CDH, I mean come on you were an undiagnosed case and were born on CDH Awareness Day.  Regardless of why I am thankful for everything about you. 

Thank you for all you have taught me during our 25 days in the NICU thus far Emma.  You have showed me that is okay to lean on people and be scared, that family and friends can help you through good times and bad, that your Daddy is an amazing husband and supporter, not to sweat the little things in life, and that while we haven't had the typical bonding experience you know I am your Mommy and that I love you dearly.  

Keep working on those feedings so we can take you home baby girl.

Thank You for the Joy you have brought to my life.

I LOVE YOU TO THE MOON AND BACK - FOREVER AND EVER,

LOVE,

MOMMY

Another Day in the NICU

Didn't get a chance to get on and update the blog before bed last night(Sunday).  Someone(Emma) decided to be wide awake when Daddy and I tried to leave her last night.  We both always feel guilty if she is awake when we leave so we had to cuddle her and love her a bit longer and got in LATE last night.  I finally was able to give Emma her first sponge/tub bath last night.  It appears that she will have the little scab of a stump that she has left for the rest of her life.  No they do promise me it will eventually come off.  She was not fan of the bath at all.  We joked with her that she didn't beat Daddy in the longest time without a bath and must only use baby wipes competition.  Daddy went much longer when he was in Iraq.  Other than the bath last night that was about it for highlights for Sunday.

Today (Monday) Daddy and I were very busy.  Emma is continuing to only take anywhere from 20-40 ml at each feeding.  Sounds good, but she needs to be taking 63 ml at each feeding.  We continue to work with the speech therapist with her feedings.  Her therapist ensures us that we are doing everything right when feeding her, but she just tires easily with them.  She is working on being weaned off of her methadone and we are hoping once she is completely off it feedings will pick up.  With her methadone she is now only taking it once a day and the dose has been cut in half.  If she does well with the half dose tomorrow evening she will not be getting any.  With the feeding issues Jason and I went to visit the Kluege Children's Rehabilitation Center today.  This is the rehabilitation center where Emma could possibly be transfered to because of her feeding issues.  Jason and I liked the center and would be happy with Emma getting help there, but we would like our next transition to be home.  Right now the doctors are happy with keeping Emma where she is because she would be getting the same amount of support at both places because the speech therapist at the center has a heavy caseload at the time.  There was also talks of us possibly taking Emma home with her NG Tube(the feeding tube that is in her nose and goes to her stomach).  Jason and I want this option(along with the doctor) to be a last resort, but we are willing to if it is needed.  

With all of this please keep up your thoughts and prayers for Emma and her feedings.  God Bless All of You and we owe much of our daughters recovery and health to all of you and your prayers.

Emma 4/24

Emma 4/24

Emma 4/24

Feeding Prayers

Well Emma is doing great medial wise as the doctors put it to us, but the little stinker needs to start eating more on her own.  Right now she is content with just taking a little bit by bottle and then letting the rest go through her tube.  Only problem with this is that we won't be taking the tube home with us.  So needless to say Emma needs to start taking a lot more by bottle/nursing before she can bust out of here.  There were talks this morning during rounds that Emma might transition to the rehabilitation center that they have here at UVA to work on her feedings.  This center would have an apartment thing nearby that Jason and I will be able to stay at while she is in rehab working away.  It is thought that they will talk more about her making the move towards the middle of the week.  So it doesn't look we will be leaving on Friday like Daddy and I had hoped.  We must remember that Emma is doing amazing and things could be a lot worse.  Continue with your prayers for Emma and her feedings.  We won't be able to upload videos for a bit because my Mom headed back to New York today(so I am having a bit of an emotional day).  Jason and I have our Infant CPR class at 4 today and then I think it is going to need to be a time for me to head back and take a nap.  Will try to update again today if things change we shall see how her feeding go for us at 2, 5, and 8 today.  Love and Hugs to all of you and thanks for your thoughts and prayers.  God Bless You All everything that everyone is doing for us near and far makes a HUGE difference in helping us through our time at UVA.

Emma 423

Emma 423

Emma 4/23

Emma did more spitting up during the night. Now when they need to put breast milk in her feeding tube instead of letting it just rush in by gravity they are putting it on a pump that puts it in slowly over 30 minutes instead of five. This is seeming to help and Emma has not spit up since they started doing this. They are beginning to believe Emma has reflux. Emma is also having her methadone changed from 4 times a day to 2 times a day. They will continue to watch her closely for withdrawal. Emma works again at 2 pm with the speech pathologist on her feeding. It continues to be wonderful to hold Emma and see what a fun personality she has. Will try to update again later this evening and post video of the new space. Hugs to all!

Emma Moves to E Pod 4/22

Yeah! Emma moved to E 31. This is still in the neonatal intensive care unit but, it is like a stepdown unit. You only get to go there if you are doing great and she is. She is now off her fentanyl and only on methadone. The goal is to wean her slowly off the methadone, to prevent any withdrawal symptoms. Emma is still having some problems with spitting up. Fortunately it hasn't been when she has taken the methadone. They took her PICC line (special IV) out around 6 pm. So now just the feeding tube and monitor wires are left. Emma did eat as much as she ever has from a bottle but, then threw up alot of it. At least the sucking and swallowing part looked better though. She still was short a little over a half an ounce from finishing the whole bottle but the progress was there. Jason and I were a little nervous, well me, about moving to E pod but by the time we left felt comfortable and settled in. It is such a bigger area to hold and love on her and it has a nice privacy curtain you can pull. Emma got a bath after her PICC line came out. It was more than the spit shine she got before but still wasn't a big honest to goodness bath. We will try to post more video and pictures of our new digs. Hugs to all! Keep the prayers coming! Our little Emma is doing so well.

Emma 4/21

Emma still continues to struggle with swallowing with feedings. It is from all the unpleasant oral stimulation she had with the tubes for so long. Emma will be getting a speech consultation to help work with this problem. She can suck really good on a pacifier and loves it. But, give her something that makes her swallow like a bottle/breast and she becomes quite unhappy. If being unhappy doesn't make the bottle/breast go away she has become quite the pretender in making even the nurses think she is sucking and getting something. Emma also was started on methadone around 5 pm. Methadone is a pain medicine she can take by mouth instead of IV. They would like to be able to get rid of Emma's PICC line (special IV line in her leg). Right now the fentanyl is the only thing Emma needs it for and it is a risk for infection the longer it is in. They will decrease her fentanyl in half after she has had 2 doses of methadone and then will work on decreasing the fentanyl even more. She gets the methadone every 6 hours for now. The big concern is that Emma not throw up the methadone. She has had a few problems with throwing up but managed to keep the 5 pm dose down me holding her upright for a half hour after her feeding and medicine. Emma's chest tube dressing is off. It has a little scab but looks pretty good. Her surgeon Dr Kane is back and said her latest chest xray looked good. Hugs to all!
Keep the prayers coming.

Day 21 in the NICU

The days are starting to blur together.  Most days we can't remember what day it is as we follow through our daily routine.  We are waiting to go back and see Emma right now.  We can't go back until after 7:30 because of shift change.  Guess Daddy and I were really excited to see her this morning because we got here about 45 minutes early.  We will continue to work with Emma on her feedings today.  She gets mad when she swallows and will give up on the whole bottle/nursing thing and just rather have the nurse feed her through her feeding tube.  Here is to hoping that she has some growth in the feedings today.  We know we will be here about 10 more days.  Continue your prayers for little Emma and we promise that we will be having a celebration of her coming home and the power of prayer once we are out of the NICU.

Emma 4/19

Emma 4/19

What A Big Day

When we got back from lunch today Emma's nasal cannula was totally off. Yeah! She is doing well without it. She will have another chest xray tomorrow that was requested by her surgeons. As of Sunday the chest xray showed Emma's left lung is not as inflated as they would like it to be and her heart is shifted a bit to the left because of it. They have Emma laying on her right side to help the heart shift and the lung inflate. The good new is that even with this going on the level of oxygen in Emma's blood is good and she is handling it well. Emma tried nursing twice today and did a great job for a first timer. She has a tendency to get worked up and want to fuss. She did get to breathing fast and had to take some breaks. But, for someone who's been through what she has in her short 20 days she was a champ. They are going slower on increasing her feedings because she has spit up a couple of times. At times it looks like she is having problems with reflux. She might be following in daddy and Uncle Adam's footsteps on that one. They are also keeping the head of her bed up now and had us hold her upright during her tube feeding. She is getting just under an ounce at each feeding. Hope you enjoy the videos from today. You can see how well her incision looks. Emma also was very pleased to have the picture of her big sister Cloey put in her crib. She moved her hands to try to touch the picture and just stared and stared at Cloey. You also may hear a small explosion in one of the videos that Emma gifted mommy with. Emma is just doing so well and we feel so blessed to witness the results of all the prayers that Emma has received. Hugs, blessings and good night to all.

Emma Loves To Be Held

Emma continues to do well. They decreased her fentanyl 0.3 today 4/19. She continues to have low withdrawal scores now that they are taking it slower. She tried a bottle again at 8 am. She was supposed to take 20 ml but only managed 10 ml in 30 minutes. The rest went in through her tube. Emma's feeding tube is now in her nose down to her stomach instead of her mouth. She can't pull on it as easy and she can't play with it with her tongue. Emma does have quite the knack for burping though. Grammy brought Emma in a couple of special outfits she got on the way to the house last night. You can see one of them in the video from 4/19. Everyone oohed and aahed over her stylish attire. Emma also go her steristrips off her incision. It looks great! We will try and post a picture later. She still has a dressing over where her chest tube was. Emma gets to try to nurse later. Emma really loves to be held and we love holding her. We have been rewarded with some smiles while holding her. Grammy managed to get a picture of one on her cell phone. Not sure if we can post it. We are sure there will be many more smiles to come. Hugs to all of you.

Emma Gets To Move To A Crib

Emma moved into a crib yesterday morning 4/18. Her fentanyl went down another 0.2. Her nasal cannula went to 9 hours on and 3 hours of CPAP rotating back and forth. Emma tried her first bottle at 8 o'clock last night. She took all of it 10 ml (15 is half an ounce). It did take her a little over 20 minutes. She just doesn't have the sucking down yet. Not unusual for a baby who has had so many things shoved in her mouth. I told Emma I didn't want her to be a thumb sucker. You can see from the video of her sucking her fist and fingers Emma has other ideas. She tried her darndest to get her thumb in her mouth but just couldn't manage it. Emma can also wear real clothes now. Our little girl is looking so much more like a baby. Keep the prayers and thoughts coming. Emma is blossoming with each one.

Emma 4/16

Emma 4/16

Latest On Emma

Sorry we are slow on getting posts up. We spend so much time with Emma it doesn't leave us much time for other things. But, it is so exciting to see her doing so well and to be able to tolerate us touching, holding and doing more for her. You can on the video that she didn't like her bath. It wasn't a true bath with soap and everything. But, it felt good to clean her up with baby wipes. Emma had a wonderfully uneventful day today. They did decrease her fentanyl. They only decreased it 0.2 instead of 0.5 like they had been Emma seems to like this slower pace better and did not have as many tremors and irritable times. Great Grandma Sprangel can relate to this after coming off her fentanyl pain patches after her car accident. Withdrawing is no fun. Emma also gets to spend 6 hours on the nasal cannula then 3 hours on the CPAP machine and then they repeat the process all over again. Grammy (Kristyn's mom) got to change Emma's diaper for the first time. Emma gave her a stinky one that the nurses said was still stinking up the can this evening. My taco salad with refried beans was making its way through. So yes Emma is still pooping without the need for suppositories. Nana (Jason's mom) discovered how much Emma liked the motion and sound machine they place in Emma's bed. She seemed to listen to and watch the monkeys and fish go by for quite awhile and let you know when it stopped. Definitely one of those in order for both grandma's houses. There is talk that tomorrow the amount of Emma's tube feeding will be increased. It is so good to get to see both girls Cloey and Emma. It will be so nice when we can be in the same room. We greatly appreciated the nurses kindness in opening the door for Cloey to get a faraway peek. Darn swine flu precautions prevent anyone under the age of 13 from coming into the NICU. Evidently swine flu cases are up in the state of Virginia. Thanks and hugs to all of you for your thoughts, kind words and prayers.

Emma 4/16

Emma Meets Her Big Sister Cloey

Emma and Cloey got to see each other for the first time. Daddy held Emma while Kristyn held Cloey. The nurses opened the door across the room so they could peek at each other from the hallway. Cloey said she was so excited to see her sister for the first time. Cloey said she smiled so big and long that her mouth hurted. Cloey can't wait for Emma to come home so she can hold her.

Emma Meets Her Big Sister Cloey

Pictures!!!!

Pictures!!!!

Videos of the Big Day!!

Updates

Sorry we didn't get a chance to update last night. Long days at the hospital tend to lead to us being worn out by the end of the evening. As you know Emma has had a lot of big changes occur in the last few days. For everyone who has asked, Emma did poop yesterday before the suppository had to be administered. Guess she heard them talking and decided she would go ahead and get it out. She has since gone two more times.
Today was the biggest day of all - Mommy and Daddy got to hold our precious baby girl. We are on day 16 in the NICU and it finally happened. I let Daddy hold her first since I did get a few seconds right after she was born. Daddy held her for a bit and then handed her off to me. Neither one of us can explain the joy we felt to finally hold our baby girl and cuddle with her. Daddy held her again this morning because he had to leave to go pick up Cloey for the weekend. I will be going back in later this afternoon and holding her again. She is right now on two different types of breathing machines that they are alternating between. The one is the CPAP and the other is the nasal cannula(the one up the nose that you think of most of the time when people get oxygen). The nasal cannula is set up as a form of CPAP but not as strong as the actual CPAP machine. She is on the nasal cannula for 3 hours and then goes back on to the CPAP machine for awhile. They are doing this because she has been given lots of support to breathe through all of this and they want to ease her into the transition. She had a bit of a fever last night, higher heart rate and still is having tremors. Her CBC looked good and didn't show any infection so they are thinking that she is going through withdrawal. They will continue to monitor the HERO program that she is on. It is a study they are doing. It follows her heart rate and picks up any trend that might be a sign of infection before other things develop. Right now it looks good. They will continue to do x-rays periodically rather than daily to monitor the small amount of fluid that is beneath her left lung(where the bowel used to be located before it was moved). Her arterial line in her right wrist quit working so they took it out this morning. So now she just has the PICC line (special IV line) in her left leg., a

Emma Will Not Go to Kindergarten With a Chest Tube

Emma's chest tube finally got removed this morning. She is doing okay with her feedings. She still needs to poop. If she doesn't do this by later today then then will give her a suppository to help. So, GO EMMA GO! They turned her fentanyl down some more. She did get a single dose of fentanyl before they took the chest tube out. She does still have some tremors. They said they would continue to monitor her closely for withdrawal. The video show her sucking on her mimi. She won't take it for mommy yet. But, it is good to see her sucking since they said she could have lots of problems with sucking since she would associate having things in her mouth with bad things. They said they would let Emma rest today and not do any more major changes today. If she has a good day and night they will let mommy and daddy hold her tomorrow. Pray that all goes well and she is in our arms tomorrow.

4/15

Good News

Emma has had big changes today. She got rid of her regular ventilator and went on CPAP. You'll see what it looks like in the video. It can deliver oxygen to her and it forces air into her lungs. So far she has been real agitated by it. Her first set of blood gases on the CPAP looked good they said. They also decreased the amount of her fentanyl. We are waiting for report to be done. When we left they said they were going to decrease her versed. We only got to visit briefly before shift change and found they had totally taken her off the versed. They said she has developed some tremors and is agitated more. They said they did give her a single dose of versed. But, that she may be showing signs of withdrawal. They also started her feeding through a small tube that goes in her mouth to her stomach. She gets 5 ml every three hours. 15 ml is half an ounce. She has only had one feeding so far. When the next one is due they will make sure she hasn't thrown up and that she has digested it. Still waiting on the surgeon to decide what to do about the chest tube. Keep the prayers coming. Our little angel is doing so well. God Bless all of you.

Emma 4/14

Emma 4/14

Internet Is Up

We posted video and decided to wait on update to see how Emma did with changes. Then the internet would not connect. So, here is the update from 4/13. Emma's heart rate is down now to a more normal number (140's to 160's). We don't know whether it was the change to the regular ventilator or the increase in her pain medication that helped. Emma's blood gases that show us her oxygen and carbon dioxide levels are actually better on the regular ventilator than the special one. The regular ventilator is set for Emma to take some of her own breaths and she is doing this wonderfully without it looking like she is working too hard. Unfortunately when they checked Emma's xray in the morning she had a little bit of fluid accumulated in the area where there is no lung. The surgeon pulled her chest tube out just a little bit and had it hooked back up to suction to help get the fluid out. Another chest xray later and the fluid coming out showed it was working. They say maybe on Wednesday they will start the chest tube process again to try and get rid of it. They stopped the suction to the tube that Emma has in her stomach. Wednesday they will see whether she could get rid of the air and secretions on her own and if the sounds in her tummy sound like those that would start digesting food. If all is okay they will start very, very slowly with some breast milk through a tinier tube they will put down into her stomach through her mouth or nose. The breast milk will be in a syringe and on a pump like the one that gives Emma her medicine. Emma also had her versed decreased a little but they left the fentanyl the same. Emma had a wonderful peaceful alert time from 11:15 am to 12:30. Of course she did this while mommy and daddy were gone to get some much needed errands done. But, the two grandmas were there to baby sit and keep an eye on Emma so they got some wonderful video of her. The blanket tent over her head is to protect her eyes from the lights that she doesn't seem to like very much. You can also see her hair cut on the right side of her head. I'm sure you'll agree she should go back here for a new do. We are so relieved that Emma is doing better and acting like out little baby girl of a few days ago. Keep the prayers and positive thoughts coming.

Video

From Mommy and Daddy

Dear Emma,

You had a rough day today and it absolutely broke Mommy's heart.  It is hard for me to watch you when you are uncomfortable or in pain and not be able to do anything for you.  It is hard for me to not scoop you up and hold you telling you it will all be okay.  Daddy and I didn't get to hold you today which got to both of us.  While we didn't get to hold you we know our time will come when you are good and ready.  You are my precious baby girl and I pray that you keeping fighting away.  You need to promise Mommy that tomorrow will be a better day.  I love your little personality, but how about we lose a bit of that stubborn streak tomorrow?  If I didn't have your Daddy as my rock right now I don't know what I would do.  While I am sure this is just as hard for him he won't let it show in order to help me make it through the rough times.  Our family, friends, and those that may not even know us very well have also been a big help.  I hold my head up tonight knowing that tomorrow is a new day.  I can't wait to see the progress you make tomorrow Wiggle Toes.  Mommy is hoping to cry tears of joy tomorrow instead of tears of frustration.  Keep fighting and know God hears your name on so many mouths.

I LOVE YOU TO THE MOON AND BACK - FOREVER AND EVER,

LOVE,

Mommy

The Latest

Another day of waiting before we could update everyone. We had to wait until 2:30 before the doctors made their 8 to 12 rounds. You'd think we would be used to hospital time by now. Emma's heart rate continued to be elevated this morning. They thought maybe she needed more pain medication so they gave her a one time dose of the fentanyl (morphine) medication. This didn't make any difference though and her heart rate continued to remain up. Infection can also cause a high heart rate so they will keep an eye on that and start her on another antibiotic and do lab work if they think they need to. She is already on one antibiotic as a precaution due to having her chest tube in. They changed her chest tube to gravity. This means what drains will drain on its own without having suction pull it out. They did an xray about 2 hours ago that looks good and without the suction no air is accumulating. It sound like tomorrow they will put a clamp on the chest tube tubing so that not even gravity can help. They will then check another xray a couple hours after that and if it still looks good they will probably take the chest tube out. In trying to figure out why Emma's heart rate is high they decided at 5 to put her on a regular ventilator thinking maybe she was working too hard against the special one. They also increased the continuous rate of the fentanyl (morphine) and decreased the rate of the versed (the stuff they give you with a colonoscopy) to see if this would make a difference. They are going to check a blood gas to check her oxygen level at 6. So not as good a day as we hoped. We really thought we would be able to hold her today. And, a bit of a frustrating day with different information coming from different people. Hopefully this is as down a day that we will have after surgery.
Keep the prayers coming and God Bless all of you.

The End of a Good Day

Jason and I just got done visiting with Emma for the day.  She had a great day today and we are continued to be amazed by the progress she is making.  She has her own personality and will let the doctors and nurses know when she doesn't like the changes that have been made.  Jason and I were able to spend a lot of time back with her today and it is nice when she wakes up for us.  We don't like her to wake up too often because sometimes she gets worked up when she is awake.  It looks as if they will take her off the one ventilator tomorrow morning and then the surgeons will discuss taking the chest tube out.  If that is the case Jason and I could be snuggling with our baby girl tomorrow.  They may have a hard time getting rid of us if that is the case.  We have both been waiting to hold our baby girl and know it will be a very emotional time for both of us when that chance occurs.  We told her to be a good and strong girl over the night and work on weaning her ventilator.  Jason and I both changed a diaper today and Jason managed to change one when she as laying on her belly and it was a poopy one.  Daddy has got quite a talent.  We got an amazing blessing from our dear friends at Natural Bridge today.  It is a blessing that will help us work through this time.  I work with an amazing group of people and am thankful for the support that they have provided and continue to provide during this time.  Continue your prayers and pray that she is able to switch to the other ventilator and get her chest tube out tomorrow.  Thank you to everyone for everything - words will never explain how everyone has helped us through this in their own special way.

New Video Footage

Here are two videos from Emma today. She is laying on her belly right now and seems to be tolerating is well. There is also a video of all the hair that she has on the back of her head.

Day 11

Emma continues to do well. They are weaning her on her ventilator settings and hope they can take her chest tube out today. Hopefully she will be off her special ventilator tomorrow and we can hold her. They are trying to turn down her pain medicine. Emma is not sure she likes this and has been a little bit more agitated and her heart rate has been up. Now they are going to try and give her a little extra pain medicine when she seems to need it. She continues to poop which is great to know her bowels are working good. On rounds this morning the doctors said "if there is such a thing as a good diaphragmatic hernia Emma has it." We don't praise Emma too much though cause every time the doctors do she doesn't do quite as well and needs adjustments on her meds and ventilator. Thanks once again for all the prayers and thoughts.

New Video from 4/9

Finally got video to post. Hope you all enjoy. We know many of Emma's fans have been waiting.
Since this morning Emma's IV in her head has been taken out. She definitely won't be coming back here for haircuts. Emma also had as her nurse describe it a "huge" poop. Yeah, her bowel is really working good. They also are decreasing her last blood pressure medicine and she will probably have another xray later today.

From Mommy and Daddy

Emma,

You are making milestones each day when we visit.  It is amazing all the milestones you have met in just the last few days.  You are our little fighter and we ask that you keep fighting away.  We continue to pray for you all day everyday along with lots of other people out there.  We will raise you knowing how powerful prayer can be.  It is all the prayers that have gotten you through this ordeal and allowed you to fight away.  You make us proud day in and day out.  Keep it up and stay strong baby girl.  There is light at the end of this tunnel.  One day we will move out of A-Pod and step down to another pod.  Before we know it we will be headed home.  Until then keep going and stay strong.

WE LOVE YOU TO THE MOON AND BACK - FOREVER AND EVE,

LOVE,

Mommy and Daddy

More of an Update

Jason and I just got back from seeing Emma again this morning.  They have lowered her one pain medication.  While we were back their she woke up and became a bit agitated and that caused her blood pressure to rise.  After leaving her be for a bit her blood pressure started coming back down.  After that Jason and I decided to return to the waiting room and give her some time to relax and not be over stimulated.  I told her she had to calm down and not get Mommy worked up.  Also they told us that Emma started pooping a bit last night.  Might be gross to some of you, but this is very exciting news for us.  Keep praying that as her pain medicines get lowered that she adjusts well to the changes and stays calm.  

Update

Emma once again had a great night last night.  She is such a little fighter.  She has come off of her one medicine completely and that is another milestone for her.  Once she gets her chest tube out and switches to the conventional ventilator Daddy and I will get to hold her and we can't wait.  Although we want to hold her so bad, we are waiting patiently so we know she is healthy and where she needs to be first.  When we were back visiting her this morning she was moving around a bit and peeking her eyes at us.  The overhead lights were on and she doesn't like the lights at all so she was just peeking at us for brief amounts of time.  It is amazing to see how much she is fighting to get better.  We still have a lot more milestones to meet on her road to recovery before she heads home, but we are on day 10 in the NICU and it is thought she will be here for a month.  We tried to upload video clips last night, but it appears that we have used up all the video clip space.  I plan on looking into that problem more this afternoon and find a solution to the problem.  Keep up your prayers!  As you can see God is Great and the power of prayer is amazing - our little Emma is proof of that.  

Pictures

Here are some recent pictures of Emma they are a little out of order. The ones from yesterday(4/7) surgery day are at the bottom and the ones from today (4/9) are at the top. Sorry I didn't feel like fighting them to rearrange them all. Here is a picture of Emma's long feet. We wanted to show everyone just how big her feet are and how she loves to curl her toes.

Here is another picture of Ms. Emma with her eyes wide open. She was having a good time looking at Daddy and I this morning.

Here is a picture of Emma relaxing on her new set of blankets that they laid down. It is nice to be able to let her use her own blankets.

Emma and Daddy.

Here is a picture of Emma's incision and her chest tube.

Here is our little fighter resting away and recovering from surgery. We are so proud of the fight she has put up during all of this.

Sorry it's late

Sorry this mornings post is late. Problems with staying connected to the internet. Emma continues to do very well. They have decreased her blood pressure medicine a little more. She is all the way off the nitrous that she was needing to help her get oxygen through her system. She is currently on 23% oxygen on the ventilator. We do have video that we will get posted. Her chest tube continues to drain fluid. She needs this so the fluid does not build up and cause problems with her breathing. She continues to suck on her tube and bless us with moving feet and legs and the occasional pretty eyes. Keep your prayers coming. Our little Emma is blossoming.

Thanks to Cloey

Cloey,

I was excited to get a name sign from you this morning.  It is beautiful and hanging up by my bedside.  Could you also please tell your sister Lilli thank you for the pretty picture that she made for me too?  I had another good night and I am off one of my many machines.  One down!  I can't wait till you get to hold me and give me hugs and kisses.  Daddy told me that you got your pictures yesterday.  I can tell Mommy loves to take pictures and Daddy told me that you could vouch for that.  I think they plan on sending you more pictures soon.  Well I am going to keep fighting away because I want to get home and be able to meet you.  Mommy and Daddy talk about you all the time to me.

I LOVE YOU TO THE MOON AND BACK - FOREVER AND EVER,

LOVE,

Emma

Just A Quick Update

Well tonight is going to be a quick update.  Mommy is starting to feel the sleep deprivation kick in.  My baby might be in the NICU, but I am up pumping throughout the night and Daddy and I go to visit early and leave late each day.  Emma had a good day today.  She was asleep for most of the day and I would be too after having a big surgery the day before.  He stomach was a little puffy and bruised, but this is from having her bowels and other organs moved around and put in the right place yesterday.  She still has her chest tube in and it is draining away.  The doctors are pleased with her incision.  She is still being weaned off the machine that they tried to wean her off of last night.  Today they have been weaning that machine by small increments rather than all at once.  Her one pain medicine has been lowered and her blood pressure medicine has also been lowered.  She is currently needing to be anywhere between 21 - 30 on her ventilator for oxygen (we are at 21 breathing room air).  Her new trick today is to blow spit bubbles.  I don't like when she does it, but have been reassured that it is just fine.  She is doing it because she has extra build up in her mouth and can't swallow because of the tubes that are in place.  It seemed as though tonight she was using it as an attention getter.  Her nurse would come over and suction her each time she built up too many bubbles.  Again we are learning that our baby girl likes to be the center of attention.

I had the realization today as I sat by Emma's bedside that she will be at least a month old when we take her home.  This made me pretty sad, but I am so thankful for the superb care that she is receiving in the NICU.  I realize it is the dream of every Mommy and Daddy in the NICU to be able to take their baby home quickly, but is rarely a reality.  Continue your prayers for our little fighter.  Hoping to add pictures tomorrow and maybe a new video.  Daddy and I are off to try and get a little sleep before we wake up bright and early to head off to see Emma.

Day 8 in the NICU

Well Emma is on Day 8 of being a resident in the A-Pod in the NICU at UVA.  Thankfully Daddy and I got a good report when we arrived at 7:30 this morning.  She had an uneventful night last night.  They did try and wean her all the way of one of the machines, but she felt otherwise about it.  She is just on the lowest setting currently and seems to be happy there.  When we left last night they were concerned because she hadn't yet had a wet diaper.  Sometimes things slow down after surgery, but they wanted her to have one.  They gave her some fluids and apparently she made plenty of wet diapers for them throughout the night.  The one she had changed when Jason and I first arrived was soaked.  She doesn't seem to have much swelling which is a good things so it won't pull on her incision.  She teased Daddy and I about opening her eyes this morning.  We got a little slit, but nothing like yesterday.  It was just amazing how alert she was yesterday.  We are hoping she opens them a bit for us today.  She continues to have such personality.  When you talk to her she will scrunch up her nose, move her fingers or her toes.  We can already tell we will have our hands full.  Jason and I are headed back in a few in hopes to catch the doctors during rounds to see what they have to say about Emma.  Continue your prayers and thank you for everything.  Jason and I have both learned to stop and be thankful for everything - little or big that we encounter in our lives.

End of a Glorious Day

As we get ready to head for such much overdue peaceful sleep Emma continues to do very well.
She is doing much better than she could have been and what they prepared us for. Her blood pressure medication is only half of what it was before surgery and her oxygen is almost back to the same level when she headed to surgery. She is on an antibiotic again as a precaution due to the chest tube she has in to help keep any extra air or fluid drained away so it doesn't put any pressure on her lung. She has flickered her eyes, moved her feet and arms and has held on tight to daddy's finger. So far she has not got too agitated which is good. She does need to give a good wet diaper though. They gave her some fluids to try and help her with this. God bless each and everyone of you for your thoughts and your prayers. God is great and through Him all things are possible. Well sweet dreams to our beautiful baby girl as she rests on the blankets that her big sister Cloey picked out for her. A blessed good night to all.
Here is a recent video of Emma. You can see the IV they had to place in her head, her chest tube, and her incision. You also can see how she now has more of a baby belly since her bowels have been moved to the right location.

Thank You!

To All My Supporters,

Thank you for all your thoughts and prayers. I made it through my surgery and Mommy and Daddy keep telling me I am such a fighter. They have been worried and I thank you for the prayers for them too. I can't wait to meet my big sister Cloey and ask that you continue to pray for her until I get to meet her. I have awhile till I get to leave the NICU, but plan on enjoying my time while I am here. Everyone is so nice and I seem to be able to steal every one's heart quickly. I can't wait to meet all of you. I think Mommy and Daddy will have to have a party when I finally get to come home. Please keep up your prayers because I can still use them.

Love, Emma Sidney

Daddy, Mommy, and Emma before surgery this morning. This picture would be perfect if Cloey was in it with us.

Not the best picture of her with her eyes open, but it was just amazing how alert she was this morning and how she kept looking to Jason and I as we talked to her.
Below is Daddy rubbing her head and Mommy holding her hand. That is the same hand that wouldn't let me go when it was time for me to leave her for surgery. It just broke my heart that she wouldn't let me go when it was time for me to leave her. That was when I completely lost it.

Our Day

Well just thought I would give everybody a breakdown of the day we have had thus far.

3:oo am The alarm went off and it was time to get ready to head to the hospital

4:00 am Arrived at the hospital and started visiting with Emma. We were able to spend some time with her and I was able to "hold" her. By this I mean I was able to hold her butt up while they changed her bedding.

7:30 Went back and sat with Emma until surgery. At one point the Chaplin came in to pray with Jason and I.

9:00 It was time for the transport. With 5 nurses/respiratory therapists, Jason, and myself headed down to the OR. This was the longest walk of my life. The entire way down my mind was racing. Jason had to help pull her bed and you could sense the worry that both of us were experiencing. Once we got down to the OR we met a lot of people who would be in the room during her surgery.

10:25 Surgery started

11:45 We got our first update. They weren't going to be able to do the surgery using the scope and would have to make an incision instead right below her ribcage.

12:45 We got our next update. Surgery was over and they were stitching her up. She would be back to the NICU in 30 minutes.

1:15 Dr. Kane came to give us a break down of the surgery. All her organs looked good and everything was where it needed to be. Her lung seemed to be of moderate size. Dr. Kane feels that she will need to be on the ventilator for 4 days to 2 weeks. This is better than the normal 3 week time frame. So it looks like she still has at least 3 more weeks in the NICU

A little before 3:00 Jason and I finally got to go back to see Emma. She looked wonderful! It is amazing how different her belly looks now that her bowels are in the right place.

Since then we have been in and out of visiting her. We are just hanging out in the waiting room going back and forth visiting her. Jason and I will be sleeping well tonight now that this burden has been lifted off our shoulders. We have seen the power of prayer in action and ask that everyone continues to pray because she still has a long road ahead of her. Again we can't thank you enough for all the prayers.

Surgery Update

We have talked to the surgeon. Emma did very well during the surgery. She did not drop her oxygen level at all which is a good sign. She has a moderate amount of lung tissue on the left side of her lung where her bowel was. Ranging from best to worst with this condition Emma should be in the best category. The other concern was Emma's bowel and whether everything was in the right place. He said everything is located where it should be. He thinks she will be on the ventilator for 4 days to 2 weeks but this is better than the 3 weeks it usually is. But, her hospital stay will still probably be another 3 weeks at least do to all the things she has to accomplish before she goes home. The anesthesiologist also came by and said she did very well. The gortex patch is attached to her rib because it was in the back where most of her diaphragm was missing. Just everyone please continue to pray for a healthy recovery.

surgery update

Surgery is complete and the nurses are on their way to get her. The surgeon will stay with her until she is put back on her infant warmer and then he will come talk to us. Thank you for all the prayers they certainly worked.

surgery update

Emma is doing well in surgery. They had to do an open approach for the surgery. This means they couldn't do it with the scope only and she will have a bit more of an incision. They also will need to use a mesh patch to close the hole in the diaphragm. They will call us again in another hour.

Some new videos

This morning Emma had her eyes open and was very alert in the hour and a half that Jason and I spent back with her this morning. She kept looking at Jason and I and it was a wonderful experience. Hope you enjoy the videos of her.

Time

Blog time does not match time it actually is. Surgery started at 10:25.

Surgery update

Surgery just got started. So, they are running an hour behind. They thought they would update us in about an hour.

Last Night

Emma had another good night last night.  They were able to wean her off some of her medicine.  She did get a little haircut on top because she needed to have an IV placed in her head.  Her nurse didn't want to have to poke her anymore than needed because she is pretty bruised from all the other pokes.  The did make sure to save the hair that they had to cut off for us.  Jason and I got here at 4:00 am this morning because we knew they were going to be turning her for her "turtle turn" - this is where they switch her head from one end of the bed to the other.  Before they turned her I was able to change her diaper.  Then once she was turned and her nurse was changing her bedding I was able to pick up her bottom while the respiratory therapist picked up her head.  While it wasn't the normal holding of your baby it was close enough for me.  Jason and I sat back with her for about an hour and talked with her about everything - her sister, her dogs, clothes, her fan club, family, and her surgery.  She held on to my fingers and Jason gave her lots of kisses.  We decided to let her rest for a bit and will go back at 7:30 once shift change is over.  Then at 9:00 she heads to the OR.  We will be on pins and needles the entire time.  Like said before the surgery should be 2 hours, but could be longer.  Once we have news we will be updating.  Like always keep up your prayers for Emma and if you could say some for Jason and I.  This is a tough situation for us as her parents and we could use the prayers.  Thank you goes out to all of you for the love and support that you have given us in the last week.  We cherish all of you and want you to know you are all very important and special people in our lives.  

Surgery Day

Dear Emma,

Mommy and Daddy have loved you since the day we found out we were expecting.  As you grew in my belly our love grew each day.  Your kicks and turns as we talked and rubbed my stomach were your way of telling us you loved us back for 9 months.  You made your arrival a week ago and all our lives changed.  I became a Mommy, Daddy had another girl, Cloey was blessed with a sister, and our lives as NICU parents began.  While we haven't gotten to love and cuddle you we have been by your side each day and night.  Our love for you and your sister goes beyond words.

Now today is the day that we have been waiting for and Mommy and Daddy are scared for our baby girl.  We have put all our faith and trust in God.  We have prayed and prayed some more. We pray together and we pray on our own.  So many other people are praying for you and we have realized we will have to have quite a celebration when you come home.  In just 3 and a half hours the surgery begins.  It hurts both of us to know that you have to go through all of this, but you are such a fighter and will pull through it with yet again another fight.  

Always know that we love you and you make our lives complete.  We waited a long time to add to our family and the 9 months we waited for your arrival felt like an eternity.  Now we wait for surgery to start and for the good news that you are on your road to recovery.  Know your sister loves you and can't wait to meet you.

Stay strong baby girl and keep up your fight.  Mommy, Daddy, Sissy, and all your family and friends love you so much.  You are our angel and we have been blessed by God to have such a wonderful addition added to our family.

We Love You to the Moon and Back - Forever and Ever,

Love,

Mommy and Daddy

Our Waiting Room Experience

Tonight while waiting for my Dad and Jason to get our dinner, Mom and I had quite the experience. While it seems strange it was a great way to get some laughs. Jason and Dad had quite the shock when they walked in to see this site. Jessica we decided that Emma would never get to see her Auntie again if you would have had to go through this experience tonight.

Update for Tonight

Another good day. No poking for new lines today. No major medication or oxygen changes. Lab work looking good. We got the results of her kidney ultrasound back. It shows some enlargement of one of her kidneys. This can be normal and just resolve on its own. The surgeon did not see any problems with it. And reassured us they will just watch this as time goes by. The surgery continues to be tomorrow at 9:30 am. It will only be changed if there is an emergency surgery needed for someone else. If this happens we will let everyone know on the blog of the delay. The surgery is supposed to take 2 hours. But, we have learned medical time is often longer than real people time. So, please don't be alarmed if you don't see anything on the blog for awhile. As soon as they let us know surgery is done and how Emma is doing we will post an update on the blog. If they give us any updates during surgery we will post these also. We will also try to post on the blog before Emma goes to surgery. We plan on being here pretty early tomorrow to spend time with Emma before surgery. Please continue to pray.

Just a Quick One

We will have to update in more length later this afternoon. We forgot the computer this morning and didn't realize until we were already at the hospital. Emma had a great night last night. This morning while Jason and I were in visiting she peeked her eyes open a few times. Then before we finished visiting her she opened both eyes real wide and looked over at us. Words can not explain how it made Jason and I both feel. It was wonderful to know that she finally saw us.
Jason and I are headed back to take a nap for a bit while Grammy and Pop Pop (my parents) stay at the hospital. Nana(Jason's mom has been here this morning). We are planning on sleeping a couple times today and then coming over about 5am to visit with her before her surgery. As of now it looks like she will head to the OR at 9 and her surgery will be at 9:30. Please pray like you have never prayed before at 9:30 tomorrow for a safe and successful surgery.
Also the wonderful students at Natural Bridge Elementary made wonderful cards for Jason, Cloey, Emma, and I. I was very moved by the love and support that Emma has practically all over the United States right now.

Tonights Update

Emma had a pretty good day today. They had to add another blood pressure medicine to keep her blood pressure up. Emma has been trying to breathe more than they want her to. They want to let the ventilator do all the work. They really can't give her any more medication to sedate her because of her blood pressure. Emma has one of the blankets under her that her big sister Cloey picked out. Emma had her ultrasound of her kidneys but we haven't heard any results yet. We are taking that as a good thing since they didn't expect anything but needed to do it before surgery. The surgeon says things are still set for Wednesday. He said this mornings x-ray looked good and some of the bowel has actually moved down. So, the balancing act between Emma's blood pressure, sedation and oxygen needs continue. We continue to wish Wednesday was here, the surgery was behind us, and that our little girl was on her way to an uneventful recovery. Keep the prayers and positive thoughts coming. Emma is currently receiving some blood. This will also help with her blood pressure. They also needed to replace some of the blood from all the lab work she has had. The blood is only one third in and she is already responding well to it.

Hey Big Sis!

Hey Big Sis,

Well I am having a pretty good day today.  Last night I wiggled my foot too much and I accidentally lost one of my lines.  I always move my feet and toes so Daddy and Mommy have given me the nickname Wiggle Toes.  I hear that they call you Bird.  I can be stubborn and I fought the doctors to get my line back in and the doctor won that battle.  Mommy and Daddy had Grammy and Pop Pop bring some of my own blankets to the hospital.  You bought me some of the most beautiful blankets - the ones with the flowers on them.  My nurse Katie said that they would be making my bed up with them tonight.  I can't wait to use the blankets that you got me.  Oh yeah just wanted to let you know to watch the mail Mommy and Daddy sent you a picture book of pictures with me for you to have at your Mommy's house.  As we get more pictures we will send you more.  Well I am going to rest the rest of today and gear up for my surgery that is on Wednesday morning.  

I Love You to the Moon and Back - Forever and Ever,

Love,

Emma

Morning Update

Jason and I got here bright and early this morning to visit our baby girl.  Shift changes occurs from 7-7:30 and you have to wait to go back once the change is made.  We finally went back about 7:45 to see Emma.  She looked good, but had pulled her ART line out in the middle of the night.  This is the line that was in her foot and the one she learned she could get people running to her bedside if she moved her toes.  Hence we have given her the nickname Wiggle Toes because she wiggles those toes so much.  They had decided that they were going to try and get another ART line in so Jason and I had to leave for awhile.  The thought of her getting poked brought my emotions back once again.  It is so hard for me to know that they are poking away at my baby girl.  The nurse came back to get us and told us they were going to give her a break and someone else would be trying to put it in at a later time.  Jason and I stayed back with her for about an hour and then I had to go pump.

While I was away Jason got report from Emma's surgeon.  The surgery is still planned for Wednesday.  He said that her x-rays have looked good and that her bowels are decompressed and have moved down a little bit.  They plan on going in with a scope and making a small incision below her ribcage to perform the surgery.  Once they get the scope in they will determine which route they have to go to make the repair.  There are about 3 different options when making the repair.  

Dr. Sinkin was able to come over and get her ART line in her wrist.  Again he offered his comic relief during the procedure.  He really helps up get through this tough time with his humor.  Daddy stayed back with her this time while she got poked.

Keep up your prayers for our strong baby girl.  

We attended Easter services in the hospital chapel. The minister prayed for Emma and her upcoming surgery. It was very nice and uplifting. Thankfully Emma has had another uneventful day. They continue to balance her sedation, oxygen and blood pressure needs. Emma gained 4 ounces of weight today. Unfortunately, she shouldn't be gaining like that yet. Fortunately she doesn't look puffy and it doesn't seem to be bothering her. When the doctor made rounds he said he didn't know where she was hiding it. He said maybe it was in her tush and she was laying there thinking "Does this diaper make my butt look big?" He interjects just the right amount of humor to help us deal with this stressful time. The care from all the staff continues to be wonderful. While searching on line my mom found a website Breath of Hope. It was started by a woman who had a child with congenital diaphragmatic hernia (CDH). The baby was actually born at University of Virginia also. She started a non profit organization for CDH. She received her non profit status on March 31, 2007. March 31st is now National Congenital Diaphragmatic Hernia Awareness Day and Emma's birthday. Many states have proclamations designating this day. The founder actually comes to the neonatal intensive care unit on that day and passes out turquoise ribbons (Cloey's birthstone) and cupcakes. Our nurse had forgotten about that because she didn't work on Emma's birthday. We will miss our nurse Karen who has taken care of Emma for the last 3 days. But, Ashley her nurse the first day should be in to take care of her tomorrow. Karen will be back Wednesday and Thursday. 

Our Active Baby Girl

Although Emma is sedated, she still likes to be an active girl. We keep asking where she thinks she is headed. We are pretty sure she is just ready to get out of this place. We did get some great video this afternoon of her and how active she can be with her hands and feet. Her feet are what she loves to move the most. That might be because when she moves her right foot it makes the alarm go off on her blood pressure reading. She seems to think that she is the center of attention and that she runs the show. Guess we have another princess in the house.

Hello to my Big Sister!

Emma wanted to say hello to her big sister Cloey and let her know she loves her so much and can't wait to meet her.
Cloey,
I am fighting strong to get better. Keep saying your prayers for me I know they are working. I can't wait to meet you and I think we will be keeping Daddy on his toes. I hope you have a wonderful Easter. I hear the Easter Bunny stopped by our house this morning.
I Love You with all my heart to the moon and back - forever and ever,
Love,
Your Little Sister
Emma

Finding Strength

During this whole experience Jason and I have found incredible strength in each other through this whole experience.  It is amazing how we thought we were close we thought we were, but found out that through this we have gotten even closer.  Yesterday the nurse told us how well we were doing given our situation.  Most times a diaphragmatic hernia is diagnosed during the pregnancy.  Then once it is diagnosed the mother delivers here at UVA, the parents receive prenatal counseling, get a tour of the NICU to get comfortable, and have a surgery plan of action already in place.  So thankfully with each other, support from family and friends, and the prayers of many we are getting through all of this and fighting for our beautiful baby girl.  

Also constantly on our minds is Emma's amazing big sister Cloey.  We can't wait for her to meet her little sister.  Daddy is pretty sure he is going to have his hands full with two girls in the house.  Every time we go back and see Emma we let her know that her big sister loves her and can't wait to meet her.

Happy Easter!

Well the Easter Bunny delivered to Jason and I in a big way this morning.  When we went back to visit Emma we were able to help out with some of her care.  Jason was able to take her temperature and I was able to change her diaper.  We both then got the opportunity to brush her hair, and boy did it need it all that hair can get pretty crazy.  This was such a blessed experience for both Jason and I.  To be able to take on some responsibility for her care while she is in the NICU brings such joy to our hearts.  Now we just can't wait to get our hands on her to hold her.

Emma had a pretty uneventful night last night.  It does appear that she is a little over inflated, which the nurse explained to Jason and I just meant that she needs some minor adjustments made to her ventilator.  They want to make sure to not put to much stress on her good lung since it is unsure what the status of her other lung is currently.  She is still sedated pretty heavily, but teased Daddy and I about opening her eyes for us this morning.  Yesterday when she cracked her eye Grammy and Pop Pop were the ones back there visiting her.  With another uneventful night Jason and I were able to get some sleep back at our new home away from home.  I can't stress how nice it is to be able to stay at the Ronald McDonald House.  Jason and I have found the charity we will be donating to for the rest of our lives.  We are hoping to get another video posted today at some point.  

Keep up those prayers and have a blessed Easter!

Tonights Update

Uneventful day. How wonderful! Emma started to wake up a little and they said they would allow it as long as she didn't get too agitated. She even opened her left eye just a slit. She moved her left arm up on her chest and likes to move her right foot which causes the blood pressure monitor in her arterial line to alarm. Her lab work has all looked great today and her latest xray is still looking good. At this time they are giving report and deciding whether Emma is getting a little too active. She is trying to breathe and do the work they want the ventilator to do. They said if they need to they will give her some more medication to sedate her more and watch her blood pressure. Keep the prayers coming for another peaceful night.

Noise in Video

The noise in the video is the sound of Emma's ventillator. It vibrates very rapidly and moves her little body. She is going to need a much higher tech bouncy seat then we got. We're thinking she will need something like laying on the washer when it is on the spin cycle.

Video Clip of Emma 4/2/10

Picture Time!

The pictures are a bit out of order and forgive me for some of them being sideways. We are just uploading them and not able to edit and turn them. I will try to put some captions under them for a bit of explanations.
Daddy wanted Emma to have a bow for her beautiful head of hair. Emma's wonderful nurse was able to find her a purple bow. It is a bit small, but it is adorable.
This picture is of Emma today. Check out her cool yellow earmuffs.

Here is Emma's setup.

Here is Emma's Tower of Power. This is where all her medicines are located.

Emma from Friday 4/2/10

Emma from Friday 4/2/10. She had to have the blanket over her eyes to stop some of the over stimulation. In her mind she needs to not have too much noise or she gets frustrated. You would think from all the barking the dogs she wouldn't mind the noise.

Emma from 4/2/10

Daddy, Mommy, and Emma on 4/2/10Sorry posted this one twice and can't delete it.

Emma's Elephant and her picture from home of Mommy, Daddy, and her big sister Cloey that is located at her bedside.

Mommy and Emma 4/2/10

Daddy and Emma 4/2/10

Emma 4/2/10

Emma 4/2/10

Emma 4/2/10

Emma right after she was born on March 31, 2010 at 7:16 pm. UVA weighed her in at 6 pounds 7 ounces and 20 inches long. Her weight at Augusta Medical Center(where she was born) was 6 pounds 1 ounce and her length was 20 and 3/4 inches long. We have decided that UVA and us are going to be going with the UVA measurements. It is the only time that a girl will be excited to say she weighs more than she actually does weigh.

Another picture of Emma right after she was born 3-31-10

Me somewhere between 6 and 8 centimeters without drugs and I was happy. Little did we know at this point that our lives would be making a HUGE change just about an hour or so later. Hopefully you all enjoy the picture overload. Keep up with those prayers. Jason and I just went back to see her a little bit ago and she looked great and was doing wonderful!!!!