Recovery

Abeni's recovery has been very smooth. She stayed in the PICU for five days. The hardest thing during that time is that she was basically stuck in her bed. She wanted so desperately for me to pick her up and hold her so we did the next best thing and I laid in bed with her.


She spent her time sleeping and resting and finally as she started to heal playing a little.



The chest tube (a drainage tube) finally came out on Sunday afternoon and we were able to rock!


Her incision is actually very small and looks like it will heal nicely.


On Monday we graduated to the complex airway unit. Cincinnati Children's has a whole unit dedicated to kids with complex airways. It was so nice to have respiratory therapists and nurses who take care of kids like Beni all the time.


Daddy had to fly home Monday afternoon. But he couldn't leave until he got some last minute cuddles from his brave daughter.


We got to hang out in the Complex Airway Unit for just two days because on Tuesday morning after her bronchoscopy, Dr. Rutter gave us the ok to come "home" to the Ronald McDonald House!



Beni was very happy to leave the hospital!


We had to go back to the hospital today for another visit because she was having a reaction to the dressing around her chest tube incision. We also celebrated the Ronald McDonald House's 30th birthday!


The plan for now is to give her time to heal and check again on Tuesday (another bronchoscopy) to see if her airway continues to look as good as it is right now. If it does we get to go home home! I can't believe it! We thought we would be here for at least a month! Abeni is kicking this recovery's butt.

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The BIG day

The day of Abeni's big surgery we woke up dark and early ;-) and nervously prepared to leave. We arrived at the surgery department and they took us right back. Dr Rutter was tied up somewhere so we got started a few minutes late. That gave us about 30 extra minutes to play with our sweet girl :) Warning extreme cuteness to follow!


I seriously die from the sweetness of this picture.


The "big OR's" don't have an induction room where I can stay with her till she falls asleep; so I had to hand her off to the nurse. I kissed her over and over and hugged her tight and Michael did the same. Then we passed her off and told her it was going to be ok. It was so hard to hear her crying for me as I walked away. We checked in with the reception in the waiting area and told them we were going to grab a bite. When we got back and checked back in she told us that since Abeni was the longest case of the day we could have our own private waiting area. Seriously so so nice and so sweet. We had a quiet private place to wait the big day out. It had "sleeping chairs," blankets, a TV, and extra large coffee cups for the coffee... In our case it was hot chocolate ;)

The surgery went fast. They started with some bronchoscopes and preparations. We got a call about an hour in telling is that they were ready to open her and get to work. Not gonna lie I cried a bit. Then about an hour and 15 later the ENT NP came in and told us that she was already getting off bypass! She figured they would be putting her on bypass but taking her off!!! The repair was done! It had gone well. They still had lots to do but it was going so well. They did all their post repair checking and things looked good. An hour and thirty minutes later the NP came in again and told us they were closing her chest and the Dr's would be right in to talk to us. After some happy nervous smiles and deep breaths the 3 surgeons walked in. They were quite pleased with themselves! And why shouldn't they be they had just given my baby the gift of being able to breath easily for the first time in her life. They had been able to make her airway 5x's the size it had been. She did require one unit if blood and had been having blood pressure issues in the OR, but now she was doing GREAT. She was doing so well in fact that they planned to take her breathing tube out later that day. They told us it would be a while before they moved her to the PICU, but that we should go wait there. An hour and 10 minutes later we were kissing our strong little angel girl.


She did so well over the next few hours and then came the big moment of getting that tube out. We were so lucky to have Michael's friend Eddy drive two hours to come and see us! After the tube was out I noticed some strange swelling on her chest. I asked the Dr's what it was and then the room got a little busy. There was lots of conversation and people moving around. It felt like air under her skin. While not common it isn't an unseen complication. A chest X-ray was ordered and the air isn't in any dangerous places (very little around the hear) it should just dissipate on it's own.


We feel so incredibly blessed. This has gone so much better then we dared to hope. Thank you to those of you who are praying with us. We are so thankful to God for the gift we have been given in our sweet daughter.

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Location:Burnet Ave,Cincinnati,United States

Pre-op visits

Today we had lots of pre-op strings to toe up. We started with an appointment with Dr. Manning the heart surgeon who will be working with Dr. Rutter tomorrow.


He was full of good news including that we won't have to have Abeni's heart stopped for the procedure! She will have to be on the heart lung bypass machine but her heart will continue to beat, just her breathing will be stopped. The risk of complications for this type of bypass are much lower! He also explained his role in the procedure and went over Abeni's imaging from yesterday with us.




After our clinic visit we went downstairs where we grabbed a quick bite to eat. Abeni was being ohhh so sweet and kissing mommy and cuddling daddy while we ate.



Then we went and had her blood drawn for her pre-op blood work and for her typing in case she needs a transfusion. Dr. Manning is well respected for his work in keeping transfusion needs low in his patients so we are hopeful that she will need little if any blood. Abeni was upset when we got to the lab she knew what was coming but she was so brave. Then we had a visit to radiology for a chest X-ray just to be sure that baby girl hasn't developed any pneumonia. (All was clear).

After all of that we headed to the surgical department to have a physical, an EKG, and a meeting with anesthesiology. The cardiology department gave her a heart pillow and pen so that all of her providers can sign a pillow for her. Abeni was getting pretty tired by this point but still was ever so sweet and playing with all the providers that were looking her over. While we were waiting in surgery we got a call from the Ronald McDonald house. WE HAVE A ROOM! What a huge blessing this is. We will be right across the street from the hospital and we can stay here until the Dr's clear us to take angel girl HOME!

We headed back to the hotel packed up and came on down the Ronald McDonald house. We got settled let baby girl play and had dinner. (Which is brought in by volunteers, how amazing is that?!) then we bathed and dressed baby girl for her surgery. We laid her between us and kissed her and whispered how much we love her while she fell asleep.

Tomorrow we need to be at the hospital at 6:30 surgery time is 7:30. The procedure should take between 5-6 hours. We are hoping and praying for the surgeons to be guided in their decision making, and for Abeni to have the best outcome possible.

I'll update when I can.

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Imaging day

My super hubby joined us in Ohio yesterday. Abeni and I woke up and started getting ready to pick him up. I tried a new hairstyle on Abeni's hair. It looks super cute :)


When we were ready we decided to find a park where Lil Bit could find a "whee." On the way there I got distracted by a very old observatory it was so cool! Then I loaded Beni back up in the car and when we got to the park...


So I played on the iPad and waited for her to wake up. When she woke up we went and played on the swings!!!


We met a mom and her daughter at the park and she asked to pray for Abeni. Ummm yes please :) Then we got in the car and went and got her dad. Sweet girl was so excited she was calling for him out her window! We had a lovely night of cuddles :)

In the morning we kept her from eating and drinking while waiting for scheduling to (finally) call and let us know when her high resolution CT and ECHO were scheduled. We called them at 8 and they said they would call back when they did we zipped on over to the hospital and she was put to sleep for her scans.


When we were all done we headed back to the room for some cuddles and quit time.


Tomorrow we have another big day at the hospital. I keep kissing her and holding her and thinking; God made you this way for a reason baby girl. And then praying please God show me the reason.

Please pray for Abeni, pray she is strong and healthy and that her strength and determination will help her heal.

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Day One broncoscopy

Abeni slept in this morning and right through her "must stop eating time." Then we did her breathing treatments which take close to an hour. After her saline treatment she often is too tuckered out from couching and getting her mucus out that she just wants to be cuddled and rest. By the time all that was over she had missed her "last clear liquid time" as well.


So what are girls with a few hours to kill who are unhappy because they area hungry to do??? TARGET of course :) We headed out to target and then baby girl napped in the car while I drove to the hospital.

We arrived a few minutes early and went to the chapel for some prayer and quiet reflection time. Then we went upstairs and found our way to same day surgery. The whole staff was very sweet with our tired and hungry angel baby. She was completely asleep when Dr. Rutter came into meet her. He told me a little about his history and success treating similar anatomy. He did tell me that most kids with similar issues to Abeni have this reconstruction as infants because they can't wait. Abeni is the oldest child who he has seen un-repaired. He has seen 4 kids with something similar to Abeni. He did say generally this is just a random anomaly and everything else is healthy. He also told me that it is always on the right side. He seems like a really good Dr. he was confident but cautious and had been talking to our local Dr. since Abeni was first diagnosed. Abeni was still asleep when the anesthesiologist gave her the anesthetic gas. I laid her down on the bed and kissed her. I wasn't in the waiting room long before Dr. Rutter called me back to chat about his findings. There really weren't any surprises. The narrowed Area is worse now then it was even in August. That explains why her breathing is becoming more and more "noisy." It was so nice to hear Dr. Rutter say that she sounds like other kids with airway issues :) There is a possibility that Abeni has a bronchial ring instead of a stenosis. The treatment is still surgery it's just a slightly different technique; we will know on Thursday when they "get her opened up." (I always get a little nauseous when I hear them say things like that.) He recommended a few more tests and procedures before we get to Thursday. About 5 minutes later I asked the receptionist if I could head back and hold my baby they said she was ready and when I got there she was sitting in a nurses arms calling for me. As soon as I picked her up she fell right back asleep. I woke her long enough to drink some juice. She downed the whole juice box in about 30 seconds. It wasn't long till we were out of there!


Abeni of course wanted "bap" for dinner so I found the nearest restaurant that served rice. She needed to hold my hand while we drove because she was so hungry, too sweet! We are really enjoying our one on one time and miss Beni loves being the center of attention. We just need to get though this weekend healthy and strong.


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Travel day

After a furious busy day of packing and smoothing out travel plans we spent Halloween morning finishing up the last minute things we needed to do before we left. Then I got my little people all dressed up in their costumes. I think they looked seriously cute!



Then Michael dropped us off at the airport. Abeni loved being in her costume and having everyone tell her how cute she is :)


Mommy was feeling pretty sad that Abeni was missing out on the fun of trick or treating so we got Krispy Kreme donuts for dinner. Abeni thought it was fantastic!!





We got on our flight which Abeni did NOT think was fantastic!



She scammed during take off and landing and I can not deny that she had an accident during landing... all over mummy's lap. Needless to say we were both pretty tuckered out on the way to the rental car.


We arrived at the hotel about midnight and went and grabbed some White Castle burgers before chilling in our room and falling asleep.


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Approved

Abeni's surgery in Cincinnati has been approved!!! Thank you for all of your prayers. We will be busy today booking flights and packing our bags.

Utah Runner Girls 5k

Heather, Karli and me before the race.

Saturday morning I ran the Utah Runner Girls 5k. It was a fun race. My bestie Heather and my Sister Karli ran with me. I wanted to finish close to my personal best time which is 32 minutes. With all the sickness and stress around here lately though I haven't been training like I should. I just decided I would take off and run hard. I did and I finished in 29:44 WAHOOO!!! Go me! I felt pretty good during the race all except for that nasty cold I can't seem to shake.

After the race

My support crew. One amazing hubby and my super cute cheering section. 

The Ball

My kids have taken Kindermusik classes. I LOVE them they are super fun and the kids seem to really learn in the class. One of the songs sung at kindermusik is "I roll the ball to you." The leader of the class sits in the front and rolls the ball to each of the children in turn while singing "I roll the ball to yo; you roll the ball to me; I roll the ball to you and you roll the ball to me." This game teaches turn taking and patience.

I guess I am supposed to be learning turn taking and patience. The last three business days I have been playing "I roll the ball to you" with insurance, and Dr's. Our insurance says they will cover Abeni's surgery. They however insist that we first exhaust all possible in network providers. First they said we would have to go to Colorado. No one in Colorado does this type of surgery. Now they say we have to go to Phoenix. There is a Dr. there who does airway reconstruction (he actually did his fellowship at Cincinnati Children's) Well today I pulled out the big guns. I called Abeni's local ENT. I was transferred to his personal assistant. She said that Dr. Smith is set on Abeni having her surgery in Cincinnati. He had already written a letter to our insurance and has been in contact with Dr. Manning many times over the last month. I asked that he please send the information to the surgeon in in Phoenix (who I am sure is a great Dr.) She said perhaps we could bypass all of that by Dr. Smith just calling that Dr. and explaining Abeni's case. So that is what we are waiting on now. We are still planning a surgery on November 8th. I see her local pulmonologist Monday the 29th and I can't wait her breathing since the weather has gotten cooler is very "noisy." I listen to her before and after her breathing treatments and the it just keeps sounding more and more narrow. I hope this can all be ironed out soon. All the unknowns are taking a toll on all of us.

November 8th

November 8th will be the day of Lil Bit's big surgery. It seems like the perfect length of time away. It's less time for me to worry and plenty of time for me to get ready. Our insurance is saying that for them to pay we need to do this at an in network hospital. I hope that we don't have to fight too hard to get them to agree that Cincinnati is the only option.

The Plan

Since Abeni's airway is going to require a specialized team of surgeons to repair we will be traveling to Cincinnati Children's Hospital for the procedure. We have a treatment plan. I'm hoping I took notes correctly when the nurse practitioner called. Here is my version as of right now. Michael will be with me in Cincinnati for the surgery. We are not sure right now when he will come if it will be on day one or on day three and then he can stay two days longer into recovery.

Day One:
       Abeni will have a consultation with anesthesiology. Since she has an airway condition and asthma, sedation for her is more dangerous. We need to meet with the Dr's and make a plan for her sedations over the course of her treatment.

Day Two:
        This is a day full of imaging appointments. She will need to be sedated for the procedures since it is critical that she be absolutely still. Abeni will have two separate high resolution CT's. One of her heart and most critically her pulmonary artery. Then they will image her lungs and airway.

Day Three:
        Clinic visits. Abeni will see lots of Dr's in their clinics. We will see cardiothoracic surgery, pulmonology, and otolaryngology. This will be a chance for each of these specialists to talk to us about Abeni, her treatment plan, and a chance to examine her when she is not sedated. I'm assuming we will also have some blood work done on this day if it isn't done before hand.

Surgery day:
      Abeni has a narrowed right bronchus. Is is sandwiched between her pulmonary artery and her esophagus. The team of Dr's in the operating room will include, Dr. Rutter (ENT who specialized in complex airway conditions where the heart is involved), Dr. Manning (cardiothoracic surgeon who will be overseeing the bypass machine and the majority of the surgery), and one other heart surgeon, there are also a few Dr's who have asked to observe. Abeni will be put to sleep and then they will open her chest and put her on the heart lung machine. They will then carefully move her pulmonary artery from and esophagus from her bronchus. They will then repair the damaged part of her airway. When they are done they will take her off bypass be sure everything is functioning well and close up her chest.

The recovery:
      We think Abeni and I will be in Cincinnati for a while after surgery while Abeni recovers. She will spend some time in the ICU and some time in the general hospital after her procedure. She will most likely even need to stay in the Cincinnati area after she is discharged until it is safe for her to get on an airplane.

It is major surgery. MAJOR We are scared. I find myself kissing her sweet little perfect chest over and over. I hold my boys tighter as I think about being away from them for an extended period of time. Strangely though it feels so much like the right thing to do. I keep repeating "God won't lead you to it unless he plans to lead you through it." I'm remembering that I have always been led down the path God intended me to go. I am leaning on Him to lead me through this.

Where We Are

Abeni has a complex airway. We have known since about two months after she came home that she would eventually need airway reconstruction surgery. In August our otolaryngologist (ENT) here in Utah examined Abeni for her follow up. At that appointment he seemed fairly confident that while we can't try balloon dilation anymore, she was doing ok and we could wait a little longer on the surgery. He ordered a chest CT, just to be sure, and he asked our permission to share about Abeni at a conference. We waited to hear from him but then the weather changed, some smoke from wildfires blew into Utah, and Abeni got sick. She sounded awful! I called his office and asked that they send him a message. He called me later that night, he had been waiting to gather just a bit more info before calling me, but wanted me to know that we would be moving forward with surgery after all. No one in Utah has the experience or the knowledge to safely do this complex correction. He told us he was sharing the info with Cincinnati Children's Hospital and that they were the top hospital for this type of procedure. He needed a week to get everything moving forward and told us he would call when things were ready. He called about a week later. He told us he had talked to Cincinnati and they were ready to move forward. We would be hearing from them. Not two hours later they called and started inputting Abeni's information into the computer. Abeni still sounds really loud when she breaths and has been diagnosed with asthma in addition to everything else that is going on. We really feel that this is the best course of action for Abeni and are moving forward with the construction.

Getting to Know Us

My hubby and I have been happily married ridiculously in love with each other for  almost 10 years. No really two neighbors in the last month have commented on this. We met in college and because we are both not patient people spontaneous we were married just a month and a half after we started dating. We love being together and he still cracks me up. Michael (luckydaddy) is in the army. Michael loves a good Harley ride and is into endurance challenges. He runs relays and mud events. He digs movies and music and likes spending time with his family. I'm Ari (luckymama) I am a domestic goddess. My seven year old calls me the crazy, homeschooling, mormon mama. I took up running this last spring. I homeschool my kids, and some days it's quite the challenge. I like reading and if I had some spare time I would probably spend it with my family and a big bowl of popcorn.

Miles is our oldest child he is sweet and spunky and makes us laugh everyday. He is seven years old and about as intelligent as they come. He taught himself to read at two and a half and hasn't stopped yet. He loves video games and wants to learn how to code so he can make iPad apps. He loves breakdancing and star wars and is so much fun to be around.

Isaac is five years old. He has never met a person he didn't love. He is sure everyone he meets loves him right back. He is right. Isaac loves giggling and is always finding something to laugh about. He has a brain injury from when he was five months old. I blogged that story here. Part one Part two Part three Isaac still has lasting effects from this life changing event. We are always seeking out more answers and better care for our little man. If you ever get the chance to meet him ask him for a hug there is nothing in the world quite like an Isaac love. 

Abeni was born in Seoul, South Korea. We were blessed to adopt her two years ago. I blogged her story here and here. She can dance with the best of them and loves anything sparkly. She thinks mama's arms are the best place to be, and loves having her whole family together. She has some remaining language delays and some health issues that we will be confronting head on in the next few months. We are so richly blessed to have the honor of being her family. 

Just another kid

Having a brother or sister (or both) with special needs means that your typical child is going to have to sacrifice. It's hard to admit but it's the truth. Miles is only seven and he has often been staying away from home so Mommy can be with a sibling in the hospital. He is often asked to sit quietly through yet another Dr's appointment. I try hard to let him be little and tell me how he feels about all of this. Never will I be able to shield him from the responsibilities that come with being Isaac and Abeni's big brother. It is a job he takes very seriously. "Mom if anyone ever messes with Isaac they are going to have to deal with me and Beni!" Yes he gets it. But sometimes it is hard. "I'm feeling left out mom." Sometimes he makes insightful observations, "It stinks that Isaac falls mom; sometimes it makes me sad."

Just like everything else in life there is a flip side to the hard part of this coin. There are wonderful gifts that come from being Isaac and Abeni's big brother. Sometimes I need a reminder of this. At our last visit to Now I Can I was blessed with one such reminder. We arrived just a few minutes late and I was rather harried. I got Miles and Isaac out of the car and asked Miles to walk in with his brother. Then I got Abeni out and put her shoes on. I met up with the boys just as they were getting to the door. There was a little girl about Miles age there who was in a walker. She was nonverbal and was upset that her mama wasn't with her. She was standing near the door whining and pointing for her mama. Miles walked right in looked at her in the eye raised his hand and said, "hey." That was it. Then he went on his way toward the "family room" to play on the computer. I was thrilled. He had seen this little girl. He had treated her just like any other kid in the whole world. It was a perfect moment for me. Miles has spent his childhood around kids who are different. To him this little girl was just that a little girl. These kids and adults are just like anyone else. How lucky he is to know that people are people.

Lucky Wifey

This is one of my favorite pics of all time! My hubby is in the ARMY. He loves his kids and he loves me. He is an amazing father, husband, and soldier.

Now I Can

Me and my Hero!! Isaac's therapy clinic "Now I Can" is a not for profit and they provide scholarships for children who can not afford therapy. One of their fundraisers is a 5k and fun run. This year I figured if Isaac can walk a mile I can run a 5k! He did and I did. This kid is an inspiration.