The Tales of Two: April 2013

Well we have been in recovery mode all week! Harper has been bouncing off the walls for the most part so we have to force her to rest in her "retreat" room.

We only had one scare that brought us back to the ER last Sunday night. Her private area was enlarged but after 2 hours and an ultrasound they said it was probably just extra fluid. She was not happy to be back at the hospital! She kept saying, "but I want to sleep in my bed Mommy" and "I like my old hospital bed better"! I promised her we would not be spending the night again at the hospital.

Luckily, Children's Hospital of Philadelphia (CHOP) is only 25 minutes from my parents house. Her next follow-up appointment is bright and early this Tuesday morning at 7:00 am! They will do an echo and remove her chest tube stitches and the stitches in her wrist. I am certain there will be more good news! I feel like we are on a roll! I never wrote about exactly what the open heart surgery entails or what Harper would be going through. I didn't want to scare the grandparents (or Todd even more)! So for those that asked, here is the basics of her surgery.

Harper was born with a congenital heart defect. He file read Atrial Septal Defect or ASD with an enlarged heart. Luckily her pressures never got so bad that it affected her lung function. When we did her first ultrasound after she came home from China, they realized she also had Pulmonary Stenosis but the issue was still out on how to repair it. We knew Dr. Spray would know what to do once he got in there! The only way to fix her heart was via open heart surgery. Stenosis refers to narrowing of the valve. In Harper's case it was due to a malformed valve when she was in utero. Typical symptoms of these types of heart defects are tiring easily and being short of breath. Here is a little diagram I found just in case you have no clue what I am talking about :)

Open-heart surgery refers to operations performed on the heart that require a patient being placed on the heart-lung bypass machine. The heart-lung bypass machine takes over the function of the heart and lungs to provide oxygenated blood to the body. The heart itself can then be opened and repair can be accomplished in a bloodless, still environment. They lower the body's temperature to 64 degrees by pouring ice into the open chest cavity In addition; a cardioplegic solution (which is a fluid with high concentrations of potassium and magnesium) is introduced to stop the heart completely. Cool temperatures avoid damage to the heart tissue by reducing the heart's need for oxygen. It only takes about 30 seconds for the heart rate to drop from 120 to 0.

To get access to the heart, the surgeon has to open the chest. To do so, he or she has to cut through the breast bone (sternum). The heart sits in a thin, leather like sac called the pericardium. To get access to the heart, the pericardial sac has to be opened. The surgeon often removes a small portion of the pericardium. He then fixes the repairs that need to made. The machine is then removed, the body is warmed and the heart is started again. Steel wires are used to close the edges of the breastbone (we should see them on her next scoliosis x-ray) and the incision is closed in Harper’s case with surgical glue.

The concerning risks to us were inadequate perfusion of organs or tissues, activation of a systemic inflammatory response, and embolization of air or particles. Especially concerning is the potential of embolization to the brain. Basically some organs and tissues get a little less blood flow then they normally would when you are on bypass. In addition to the risks of bypass, the heart itself can be affected. First, the heart undergoes a period of no blood flow during most open-heart operations. Myocardial function may be compromised. Second, the heart’s function may be decreased or “depressed” after surgery. The heart needs time to adapt to new anatomy and physiology after repair. Last, the heart rhythm may also be affected by open-heart procedures. Some patients require temporary or even a permanent pacemaker. They actually had the wires hooked up to her during her surgery should they not be able to start up her heart right away. I have read about many children having these complications after surgery so we tried to prepare ourselves that she would likely have a complication. We were beyond elated when we realized how well she really was doing!

During heart surgery, a highly trained group works as a team. Harper’s surgical team included:

The cardiovascular surgeon, Dr. Spray, who heads up the surgery team and performs the key parts of the surgery.

The assisting surgeons, who follow the direction of the cardiovascular surgeon.

The cardiovascular anesthesiologist. The anesthesiologist made sure that she got the right amount of medicines throughout the surgery and monitors the ventilator.

The perfusion technologist, who runs the heart-lung machine.

The cardiovascular nurses, who are specially trained to assist in heart surgery

As well as fellows and an attending physician.

Harper had the following inserted (most only lasted during surgery or the first 24 hours):

A tube in the airway (endotracheal tube) and a respirator to help with her breathing.

One small tube in a vein in her foot (IV line) to give fluids and medicines.

A small tube in an artery (arterial line) on her wrist.

One chest tubes to drain air, blood, and fluid from the chest cavity

A tube through the nose into the stomach (nasogastric tube) to empty the stomach and deliver medicines and feedings.

A tube in the bladder to drain and measure the urine for several days.

Many electrical lines and tubes used to monitor the child.

On Wednesday the day before her surgery (pre-op) the cardiology team reviewed these details of her surgery. I did shed a few tears at this visit of course but I have to say Todd and I were so confident with the surgeon and we also felt the Lord's presence. There really is no other way to describe it!

After we finished all the pre-op procedures (x-rays, blood work, etc.), we ate lunch together as a family and just prayed that next 24 hours would go super smooth. I have to say it was a bit odd to be sitting at CHOP's cafeteria praying with her. We had waited for this day for three years and someone else around the world has to wonder for the rest of her life if her child ever had surgery. We were more than ready to get the surgery over with but I also soaked up every minute with my precious peanut! Throughout the day Todd and I had to keep reminding each other that she needed this surgery -- it wasn't an option. We tried to keep Harper calm as much as we could that day but overall she was tired and scared.

After lunch we went back to my parents where I packed a huge suitcase for all of us and then one for Talia. We all said our good byes to Nanny and Poppy and then we dropped Talia off to my best friend's house. Aunt Deanna and Uncle Mark would be watching Talia for as long as she would stay! They have three boys and we all know Talia can be very active so this was going to be a great stay for her! Amazingly enough, as soon as we got Talia out of the car seat and she saw Aunt Deanna's big back yard, she screamed, "playground!" then she was off and running. So we left while we could! We tried to build excitement for Harper by telling her that we would be staying in the big city! There was no room at the Ronald McDonald House so they set us up at the Doubletree Hotel in center city. Upon checking in they give you warm chocolate cookies so this place really was already on our good side! Little Miss Harper loved our "hotel house" as she called it and just soaked up our view which overlooked my first place of employment out of college at the historic Bellevue Hotel across the street.

"Mommy everyone looks so busy!"

This child has the whole world in the palm of her hand!

We decided to make the most of our Philly visit and headed out to take a walk down memory lane. Ten years ago I never would have imagined I would be walking past my favorite shops now holding my child that was having a major operation the next day! For those not familiar with Philadelphia this hotel sits in a very posh area of town with the best restaurants and shops.

"Daddy is this the big city?"

My sweet parents gave us some financial freedom that week which allowed us to pick the restaurant of our choice. Of course the restaurant across the street looked fabulous but maybe not the best for a four year old. Todd thought we were going to get turned away but I figured it's Wednesday night I am sure they want any business! As Todd says God put him in his place when the maitre d' welcomed us in with a huge smile and guess what? He was wearing a southern bow tie! They seated us near the window and for the next hour I kept telling Harper that this is just like a princess that gets to eat in a fancy restaurant. Of course there were lots of spills, screams and even her head on the table but overall she was good and mommy and daddy got a great meal!

After dinner we just tried to relax and before we knew it was 11:00 pm and we all knew we had to go to sleep and turn off the lights. Harper loves sleeping next to her daddy and I like to sleep by myself! It was the sweetest thing to hear a little voice in the dark say, "Goodnight Mommy. I love you!" All I could think of is please Jesus let this not be the last time I hear those words.

"Mommy I will just think of doctors kits tomorrow when I am scared."

We woke up at 6:00 am -- a big "shout out" to my dear friend Elizabeth who was up before us praying and starting the prayer chain! You are one of a kind and mean so much to us!

Harper, for about the past year, would wake up weekly and look at us and ask, "Is today my heart surgery?" So when she asked that morning we finally got to say, "Yes it is!" And of course I mustered up a fun cheer saying, "Go Harper, Go Harper!", which then resulted in her dancing and jumping on the bed while daddy was in a panic to get us out the door in 15 minutes! We packed a big bag assuming Todd and I would both be in the hospital for at least a week keeping an eye on her! Harper was thrilled to be in a taxi and with nervous stomachs our car made the way throughout the city. It was eerie to just see a few joggers in the streets even more eerie to be the only people pulling up to CHOP's front entrance. We were there and ready to get her heart healed!

They never gave us a surgery time. It was just arrive at 6:45 am. Once we got checked in Harper ran to Nanny and Poppy who had been waiting for us already for 30 minutes. You could tell they were more nervous then all three of us combined. I always joke with them that they were not cut out for special needs adoptions and although this is the path Todd and I took we realize it can be hard for others. They just love Harper with every ounce of themselves and although we had "peace" with this operation it was still is a very big deal. The receptionist told me that there was a "big crunch" because the ER was busy the night before so Harper's surgery may be delayed or even postponed. I was like it is happening today! Harper just played with the toys like it was an ordinary doctors visit. Todd and I mustered to have a cup of coffee. I messaged my "power rangers" and they prayed hard that we would be called back soon. It sure did work as we were called back only an hour later!

My stomach did sink once we were in the room prepping her for surgery. They gave us hospital cleansing cloths to wash her down with. Of course she was more upset about taking off her new outfit then she was to get an IV in her wrist! You could hear her screaming down the hall as Todd washed her off. She was not too thrilled with the feel of the sticky wipes but at least we knew she had no microscopic germs on her now! The nurses ask you a million questions that you have already been asked the day before and really you don't feel like answering anything. You just want to hug your child, pick her up and take her home! They gave us all wristbands so that we would have access to the hospital. Harper was getting very antsy so they started her with a drug which was suppose to relax her. Harper has been under general anesthesia five times before and the last time they gave her a drug called Versa which made her seem a bit drunk! This time they gave her Pentobarbital which is now on my list to never give her again! She ended up having a paradoxical reaction to the drug and at first the nurses were like this is normal -- they are aggressive then they calm down. Well we never hit the calm down stage! A child life specialist came in to explain to Harper all the different wires and tubes she would wake up with and Harper just threw the doll baby to the floor. We could not contain her and she was screaming, kicking and crying for her "presents"! She had seen the big gift bags of presents that we had for her and that is all she wanted but her eyes were half open and there was no way we could bring the presents back to this room where five other toddlers were getting prepped for surgery as well. We had the crazy child ! This was definitely not the way I wanted to leave her and it made it very difficult for us to separate. The head anesthesiologist and his assistant came in to explain the drugs she would be getting and I asked if he would be in the room. Of course I meant are you in the room throughout the whole surgery or is your assistant who looks like she is in her 20's going to be taking over! He said, "Oh no there is an app on my iphone and that is how I control everything!" Of course my hubby thought this was hilarious and well I was not in the mood for any humor. This is my baby!!!! If I could have been in that room I would have! Anyways, back to the kicking and screaming. Harper decided she wanted to play with some of the medical toys including a big purple toy syringe so as we wheeled her down the hall in daddy's arms she had her monkey, her American Girl doctor's thermometer and now a toy syringe! Mommy snapped one more picture and we placed our flailing child into the hands of the anesthesiologist nurse whose last words were, "Don't worry we will give her more medicine to put her to sleep and she won't remember any of this!" (f you scroll down to previous posts you can see the infamous picture of her being carried down the hall!)

See that pink syringe she was up at 3 am that night begging the nurses to find it and they did!

Everything is calculated at CHOP. After you leave your child of course you are upset so instead of sending you right to the waiting room they have you meet with the surgeon in a private room. As we waited for him to come in two surgical nurses stayed with us to keep us sane! I really wasn't in the mood for small talk. I just wanted to get back to the waiting room, get my bible out and pray and of course update Facebook! We never had the opportunity to talk with the surgeon before so we weren't sure what to expect. I had my little book of notes -- Thank You Shannon for my notebook. I thought of you every time I used it! Dr. Spray is a very tall man and he is so calm. The nurses even commented that in the worst case scenarios he is super relaxed and never misses a beat. They have never seen him nervous. Isn't that amazing? I guess that is why he is a world renowned surgeon. God clearly blessed him with this craft. He came in and sat down with a small-so cool, calm and collected. I am sure we looked like sleep deprived nervous parents. He already had done one open heart surgery that morning and had two more on the schedule after Harper's! In some ways that relaxed me because I figured he thinks this is going to be a great outcome! He briefly went over the surgery with us and how he would repair the ASD then gave us three scenarios on how he thought he would repair the pulmonary valve. He told us not to worry. I don't know if he was a Christian but I could not leave him without telling him that he has to be the most prayed for man today! He blushed and said, "Thank you!" Todd asked him a few questions and I really did not have much else to ask. At this point I knew that we were in the best hands possible. I only had one other comment and when I started to say it I knew Todd was going to put his head down but I did forewarn him I was going to say it! Harper is a child now but someday she will be a young woman who will care about her scar. I felt if there is anything that could be done to make the incision minimal then I wanted to mention it. Dr. Spray told me that he that he tries to start low then expands and then I said, "Well she does model so if we can keep it low that would be great!" Yes I could feel Todd's eyes on me now and the nurses but I didn't care at this point. Then Todd said, "Please do whatever is right for the child" and Dr. Spray smiled and said "of course!" Alright let me tell you that I am so glad I spoke up. Harper should have had a 6 inch incision and it is only about 3 inches on top of that it is so even and only one chest tube was placed in her that sits right below her incision. When we saw Dr. Spray after her surgery he said, "The model looks great"! Haha!

The surgery was suppose to be four hours including an hour of prepping her. She ended up being in surgery for only 2 hours -- half the time her dental surgery took last April! We decided to sit on the "bridge" on the 6th floor -- the same floor Harper was having her surgery on. The bridge is an enclosed heated walkway with floor to ceiling windows that connects the ICU with the main hospital. You can see center city Philly and the other medical campus buildings across the street. It made us feel close to her and in some way I hoped she knew we were there. Also the Cardiac Intensive Care Unit was on the same floor. After we left Dr. Spray I got to meet one of my online adoptive moms, Diane from http://mylifeingodsgarden.com! Her daughter adopted from China has been at CHOP for awhile now and Diane was so kind to take time of out of her day to meet us! It really helped to talk with her before we got settled! I spent the surgery time as most of you know updating the blog, Facebook and praying. I also would receive hourly calls on my cell phone. It was not how I pictured surgery time taking place. I thought I would have a face to face nurse updating us and we would be nervous as could be but generally speaking, and considering the circumstances, we were all relatively calm! Of course when the phone rang I would jump from my seat. During our first phone call there was a code blue blaring over the intercom so it was hard to hear the nurse on the phone giving her first update!

As we waited, your messages all came in and each one brought us to a deep state of gratitude for the friends and acquaintances the Lord has given to us. You are all so special and beyond sweet to pray for us. We heard about offices stopping to pray for Harper. We heard about classrooms pausing when she went on bypass. We heard about little toddlers praying for Harper's heart as they started their day and we heard about prayer chains taking place. I can not express to you how much that helped us and clearly helped Harper and the surgeon. You took our greatest fears away and even if it had gone to the worst case scenario we know it would have been God's plan. There is something comforting to know that our creator knows everything before we do and that no plans or extreme worrying can change the course of our lives but prayer can carry out His plan and can help those that desperately need to feel His prescence. We discover God's plan for our lives through prayer life and we also learn what it means in these harder times to rely on Him. He heard our cries and He answered loud and clear.

I am so glad the Lord clearly lead us to CHOP! It was always our first choice and so was Dr. Spray for our surgeon. Harper's total time on bypass was a mere 22 minutes! Other hospitals told us it would be 1-2 hours on bypass! When I got the call that she was off the bypass they also told me they were getting ready to close her up. I looked to my family like you are not going to believe this! Everyone cheered to hear she was going to be just fine! The nurse came out and directed us to another private room where we could meet with Dr. Spray once again! I was so elated when I saw him come through that door. Of course I gushed and gushed about how amazing he was! He explained that she did beautifully and that he was able to just stitch the ASD closed. He then went on to describe the pulmonary valve was a little more involved. It was slightly narrowed at the top but not major enough for a valve replacement. He felt it was in her best interest to do this just one time so he sliced the valve lengthwise and then used her own tissue from Harper's pericardial sac to close that valve (this is the sac that surrounds and protects the heart and can be used in heart repairs. When they pierced the sword through Jesus's heart that is the area of his heart they went right through. John 19:34 reads, After Jesus died on the cross, John notes that “one of the soldiers pierced Jesus’ side with a spear, bringing a sudden flow of blood and water.") Dr. Spray was able to use Harper's own heart tissue for everything and said that her outcome is very good and she has no restrictions!!! We were so overjoyed with the news and I think in shock mode that it is still sinking in a week later. She should never need heart surgery or any other repairs again. Can you believe?! Not only were they able to fix her heart with her heart tissue but they also were able to do the whole repair without transfusing any blood! That is huge!!! They said the most Harper would need is three units of blood and Todd donated his blood for her ahead of her surgery date. He is our super hero! Thank you to those that offered to donate. As a former Red Cross employee I highly recommend you donate regularly to the blood supply if you are eligible. It truly makes a difference in the lives of others. Todd did not end up being a match for Harper but the coolest thing is we found out her blood type which is B positive. I know my adoptive friends reading this know how exciting it is to learn something new about your child. It might seem like a minor thing to learn about your child's blood type but when you know nothing about your child's biological parents and you get a new tidbit of information on your child it is like hitting the lottery or hearing your daughter's heart is healed!

We were able to see Harper about 45 minutes after she was moved in to the CICU. I had prepared Todd on what it was going to look like in that room and the number of tubes that would be coming out of her body. I had seen a ton of pictures and followed countless other adoptive friends stories on their heart babies. However when I walked in her room I was shocked. It was so streamlined and it looked like she was just resting with a beautiful blue blanket that someone had sent to us -- Thank You! Instead of being scared or nervous I just felt at peace. They had already removed her respiratory tube in the operating room so the big breathing machine I was expecting to see was not hooked up to her anymore. Our CICU nurse, Heilea, was so on top of things and explained every tube and wire. She also stayed in the room with us all day answering any questions we had as well as explaining what the big blue button was and that if she hits that button we were to stand back because 80 people would be in the room within seconds! I just remember thinking I hope she never hits that button! My prayer warriors will appreciate this. Hiley said that she was suppose to be off the day of Harper's surgery but she decided to pick up overtime and my dad overheard and said, "No you really didn't have a choice. Mary Jane's power rangers aka "prayer warriors" prayed for you to be here!" And we are so glad you did! There was a few times where her pressures dropped (that was not fun) but they quickly adjusted her medications and there was always a round of doctors double checking everything. The only reasons her pressures was dropping was due to the sedation medicine ("dex" for short) they had to give her. It was called the dex game! We needed her to be sedated because she was a wild woman trying to stand up and rip all the tubes out of her body just a half hour after surgery! However, when you are on the dex, it lowers your blood pressure and your breathing rate but her heart was functioning great even with the new anatomy! When the attending surgeon first visited her room an hour after surgery he said we need her to sit up before she moves to the step down floor. That should happen in about two days. Yeah our girl sat up right after he left the room! First milestone checked off our list! During her crocodile crawl she got up she managed to tangle every wire and tube in her. The gave her more dex while Todd, myself and the nurse spent the next twenty minutes untangling all the cords.

Amazing Dr. Spray. Did you notice it is similar to "pray"?

I don't like this!

The Director of Harper's preschool gave us the coolest gift -- a signature picture frame so all the nurses and doctors signed in. What a keepsake it will be for Harper and for us to always remember her "A" team! Harper did great that first day and I really thought she would be in "sleep" mode for next two days. But as Todd and my dad went down to the cafeteria to eat, I got out my bible and read to Harper Psalm 121 the one that the Lord led me to while she was on bypass. As I read it out loud to her she began to move and looked at me with those big eyes and asked for "presents"! Yes not prayers or water for her dry mouth but presents! I was like you have got be kidding me she totally remembered everything before she left us before her surgery and after all she had been through all she cared about was presents. What a girl!

Mommy's sweet angel

Monkey made it into the Big book of boo boos

We were only in the hospital for 48 hours but in that time Harper made quite the name for herself. Nurses on other floors heard about our feisty wild child! She was called the animal more then once...ha! Harper loves medical supplies so as someone else said on my Facebook page this is a homeschooling field trip of a lifetime:) She said so many funny things during her stay but through it all she was so brave. Yesterday she said to me, "The kids were not brave like me mommy. I didn't fight the doctors. The other kids screamed and shouted but not me. I was so brave!" She truly was courageous and deserved her heart hero cape!

She was also totally Princess Harper. Todd spent the night with her the first night and she was up until 4:30 am talking with him. The next morning the doctors were during their rounds in the hallway and she told the main doctor to come in her room with the medical team instead of being in the hall talking about her. So the doctor was sweet as could be and gave in to Harper's requests. Todd said it was the funniest thing to hear the doctor go into the hall and say, "Okay princess Harper has a request." The team of about six doctors and all their equipment followed the doctor back into the room. Princess Harper was quite pleased! Harper is a sweet, caring child but so many people don't see the other side of Harper unless you have witnessed her diva behavior in person! It was that well spirited nature though that got her discharged in record breaking time! Every time a nurse came into the room she was just look them right in the eyes and say, 'What are you going to do to me now?" What a charmer! She definitely knows how to win people over!

Uhm are you sure that is right?!

Yes I rule this hospital!

What do you think Doc?

God was in all of the details. Here were just a few of the many examples: The room next to Harper was another adoptive family that had just adopted a 2 year old from China two weeks prior. She needed emergency heart surgery for her TOF. We soon realized we had mutual friends (quite common in the adoption world)! She also had another daughter adopted from China that was Harper's first official visitor! It was so neat to meet this sweet child when just a few weeks ago she was blue in China hanging on for dear life. It was such a relief to meet these parents who had already raised four biological children and now in their 60's decided to adopt to expand their family! So amazing and inspiring! On another God coincidence, another online adoptive friend, Kelly from http://www.myoverthinking.com, was in the area with her adorable four year old daughter and was so kind to stop by and pray over me while Harper was recovering. Prayer warriors wasn't this one of your prayers?!!! So cool, right?! Harper was also up and walking and laughing 24 hours after her surgery. Now that is a miracle!

Yes Minnie has to go everywhere I go

Yeah they said I can leave today!

Happily Ever After Starts Right Now

Hip Hip Hooray I am leaving today!

Well we just flew through recovery and next thing I knew we were all back at the "Hotel house" and Harper was enjoying her room service! It was like nothing had happened and she of course was loving all the one on one attention from her Mommy and Daddy! What an amazing experience to witness God's faithfulness and once again see how He provides all the support we need to get through challenges in our pathway. Thank you everyone for your love and concern.