Post Op Day 4

Day 4

What a great day!  Melia started the day after a very restful night of sleep with few interruptions.  She did sleep with her fruit snacks for security and ended up with one stuck in her hair that had to be removed with scissors, but other than that the morning was great.

After an uneventful rounding by the doctors it was determined that she was a "boring" patient.  I couldn't be happier!!  Shortly after rounds the nurses came in to remove her two peripheral IV's in the feet and her atrial line.  The removal of these was no fun, but once it was done she had more freedom to move around.  She was still hesitant to walk because the chest tube and pacer wires were still hanging out of her belly.  Her personality really started showing as the morning progressed.  She was coy and silly and talkative and wanted to go round and round and round the ICU in her wagon.

The docs also opted to discontinue her Lasix and she was able to continue urinating without this medicine the remainder of the day.  As far as other medicines go, by the end of today the only medication Melia is on routinely is Ibuprofen three times a day!  No morphine, no scheduled Tramadol, no scheduled Tylenol, just Ibuprofen!  Melia also received another Echo to check her heart function with the band in place this morning.  She handled the Echos beautifully, but taking Bubble Gum flavored Ibuprofen is torture for her...she throws a fit every time.

I ended up leaving for work after Melia had a light lunch (her appetite is not completely back) and Ryan was on hospital duty.  He was fortunate enough to be with Melia after she woke from her nap and the NP from surgery came in to pull the pacer wires and chest tube.  Melia was NOT a happy camper, but again calmed down within a half hour of them removing the tube.  With this out she started walking and then running all over ICU!

Unfortunately, our social worker with Holt arrived just as Melia woke from her nap and the NP came in to remove the chest tube.  In the midst of a wonderful day of recovery she was present for the only tearful part of the day.  We are excited to show her the happy Melia at our next post placement visit in July.

I arrived back at the hospital by 5 and ate dinner with Melia around 5:30.  The rest of the night was spent literally chasing our heart baby all over the second floor of the hospital!  When her siblings arrived she greeted each of them with a huge smile and hug.  It was precious to see our four kids all loving each other so very much.

Ryan left for home with the big kids and I am staying the night once again.  We are planning to discharge tomorrow and get back to usual living.  Tonight I told Melia that tomorrow she would get to go home and when I said home she replied by saying, "Hallie, Jake, Zac, Daddy."  How heartwarming that "home" has quickly become the place where her family is.  Our grandparent reinforcements from Kearney left to go home and get ready to serve at Royal Family Kids Camp starting Sunday.  The Omaha grandparents are still on grandchild duty for tomorrow, but hopefully after that they can also relax and settle back into their usual routine.  We are so incredibly thankful they willingly and lovingly served us this week by caring for the big kids so we could concentrate on Melia.

So, we are very close to checking surgery #1 off our list.  Words can not express how thankful we are that God saw Melia through this, has sustained Melia and all of us and has enveloped us with peace.  We are blessed.

Our journey through Melia's first heart surgery in pictures...

Day 1...right after her Pulmonary Artery Banding was completed.

Day 2...Oxygen no longer needed

Day 3...up in the wagon and visiting with the therapy pet

Day 4...nothing but a central line left...running, laughing and playing

THANK YOU ALL FOR YOUR PRAYERS, THOUGHTFULNESS AND ACTS OF KINDNESS!

Post Op Day 3

Day 3

Last night's sleep was still interrupted but not nearly as much.  Our day began at 3:30 a.m. when Melia called out to me, "Mama," and then proceeded to try and sit up by herself!  I was quickly by her side.  She sat up in bed and asked for "noonul," (a.k.a. noodles).  After eating cold Ramen noodles (yuck!) she laid back down and for the next three hours we took short cat naps occasionally interrupted by visits from our night nurse.

I must mention how wonderful our night nurse has been!  She has been attentive to Melia's needs as well as mine.  What a gift to care for young children, babies and their families.  We have had a very good PICU experience at Childrens Hospital in Omaha.

Around 7 or 8 a.m. Melia asked for, "Rocky, rocky,"  (a.k.a the Rocking Chair).  I held her in my lap for the next two hours as she slept in my arms.  We were having a fabulous day!  She had no morphine since the day before, pain managed well with Tylenol and Ibuprofen, talking, more active and animated.  She was also given an IV dose of Lasix to help her start peeing.  Well, it worked!  As we sat in the chair together I felt a warm sensation cover my lap.  I happened to be talking to a friend that had brought me coffee and Melia was tangled contentedly in wires on my lap so I just sat there for awhile.  Disgusting, I know, but you do what you have to do!

When I stood up I was covered from my waistline to my knees in Melia's pee!  Of course, a group of residents and docs was standing outside Melia's room ready to round on her when I walked out of her room drenched in pee to go clean up!  It was quite comical.  Anyway, I did clean up and was able to join the docs for their discussion about Melia.  Everyone was quite pleased with her progression in healing and the results of her Echo, labs and X-rays from the day before.  They were ready to move her to a regular Med/Surg bed, but there was no room on the 5th floor, so we are staying another night in ICU.  They also determined that she could have her Artery Line removed from the left wrist and get up to move as much as she would like.

So, shortly after rounds the nurse started the cumbersome process of removing all the sticky tape to pull the "Art-line" from her wrist.  This was Melia's first episode of crying for the day.

Ryan and his mother arrived around 11 to take over Melia duties so I could run home, change clothes and do an afternoon of work.  Before leaving we introduced Melia to the wagon.  She loved getting out of the room and wandering the halls of the ICU.  We even ran into a therapy dog that she showed some interest in.

All in all it was a much better day with less pain and tears.  I marvel at how much can change in just 24 hours.  We pray she will continue to improve by leaps and bounds every day.

The afternoon was somewhat uneventful other than some scheduled Tylenol and the redressing of her chest tube site.  I returned at 5 to spend the rest of the evening and the night with our sweet girl.  Hallie and Ryan were attending to her and she received a huge bouquet of balloons from my running friends.  She did some more rounds in the wagon and enjoyed chilling out in the rocking chair with Hallie.

My only concerns right now are her lack of appetite and that she has not produced #2 yet!  I am hopeful and prayerful that tomorrow she will want to eat and drink a little more.

I can not emphasize enough how overwhelmed with peace me and my family has been during the past few days.  Saying thank you can not even begin to show my gratitude to all the people that have prayed and interceded for us during this time.  I am filled to overflowing with thankfulness to God and the wonderful people in our lives that have prayed, called, visited, sent gifts, texted and supported us.

The physicians have emphasized the importance of continuing to watch Melia's heart function closely but the concerns about complications continue to diminish with each day that passes.  Surgery #1 is almost behind us~hallelujah!

PA Banding Post Op Day 1 and Day 2

Day 1

My wonderful husband got the cord for our laptop and my mom brought it to me in the hospital so I can finally write about what has transpired over the last day and a half.

Yesterday, May 29 Ryan and I woke up around 4:00 to get ourselves and Melia ready and to Childrens Hospital by 5 a.m.  I was happy with an early morning start time so that her overnight fast did not extend too much into the next day.

As expected we had lab drawn, and EKG and CXR done and visited with the anesthesiologist and surgeon all before her 7 a.m. surgery.  She was not happy to have labs drawn, but it was not as traumatic as her first experience with the lab a month or two ago.  After receiving some Versed to calm her I carried Melia to the surgery doors, kissed her good-bye and Ryan and I watched as the nurse rolled her away.

At this point we were so very thankful for all the prayer preparation that had taken place the days and weeks before this moment because we felt peaceful and calm.  We trusted that God was with her and with us deep down in our hearts.  Let me say, the anticipation of surgery was more worrisome than the actual surgery day.

The Cardiology department then escorted us to a private waiting room where I read, filled out a hospital form and Ryan watched a movie.  A few minutes before 8 a.m. the nurse let us know that they were ready to make the incision.  The first hour had been spent prepping her chest and getting IVs established.

Around 9 the nurse called us to say the surgery had gone very well and that Dr. Hammel was about ready to sew her up after checking her intraoperative echocardiogram pressures.

Finallly, around 9:30 Dr. Hammel came to visit us and was pleased with the procedure.  We breathed a sigh of relief and were then told to go to the PICU waiting room where the nurse would notify us when Melia was in her recovery room.  He also told us a little more about her surgery.

He said he used a teflon Pulmonary Artery Band and that he had never had anyone reject the material.  He put in a piece of Gortex (makes me think of ski gloves...hmmm) behind the sternum so the heart would not, "stick to the sternum."  This will make it easier and safer to perform future sternotomies.  The sternum was wired closed and dissolvable sutures were placed in the chest wall to close up the incision that he made.  He also noted the precise location of her coronary arteries because someday, when we proceed with a double switch, they will be harder to see through the scar tissue and he will have to move them.  We were so pleased with his confidence, precision and attention to detail.

Once we got to the second floor PICU we waited quite awhile for the nurse to welcome us back to Melia's room.  I was blissfully ignorant to what was happening behind closed doors.  I guess the doctors had given her a pretty hefty dose of Morphine postoperatively to help with pain but one of the side effects of this is decreased respirations.  Melia tends to hold her breath when she is really upset, so when she woke up she was not breathing well.  The immediate concern was that her left ventricle was acutely failing so a stat Echo was done while they bagged her to help her breath.  Fortunately, it was not her left ventricle and so they gave her some Narcan to reverse the effects of the Morphine and they started her on a medicine called Pressidex to help with pain instead.  Once she was stabilized they notified us she was doing well and we went back to see her in the PICU.

Ryan and I spent the rest of day sitting with Melia as the anesthesia slowly wore off.  She had a couple more breathing "spells" where they had to bag her to her her oxygen saturation back up, but these were short episodes, thankfully.

The big kids came for a visit in the early afternoon.  Zac's visit was fairly short and he seemed more interested in seeing and spending time with me than focusing on his sister.  Jacob was tentative, quiet and interested in all the equipment and machines.  Hallie was curious about all Melia's tubes and was very attentive to her sister's needs.

By the late evening they removed her nasal oxygen.  She and I fell asleep together around 11:30.  Ryan, my parents and the big kids all spent the night at home which is only 20 minutes away from the hospital.

Her first night was interrupted by doctors and nurses concerned about her dropping blood pressure.  For some reason it kept dropping even though Melia seemed to be doing very well.  After decreasing the Pressidex and eventually eliminating it and then giving her albumin fluid the doctors were still at a loss as to how to get her pressure up.  I was not scared because she looked so good, but I began to pray and God graciously fixed the problem.  Her pressures began to rise.  They did end up transfusing her because she was slightly anemic and since about 3:30 a.m. her pressures and pulse have been great!

Day 2

Post-op day one started early around 5:00ish with Melia feeling so much better!  She smiled, was talkative and even gave me some giggles!  We read books, she ate some food and started wiggling a little in bed and we "talked."  Around 10 a.m. the fun ended.  Melia managed to pull the sticker off her central line in the neck sometime during the night and so they had to redress it.  To do so, she had to sit very still which meant the nurse held her down a little.  This made her mad, which had her cry and sweat so the new sticker wouldn't stick.  Finally, they gave her a small dose of morphine to ease pain and chill her out a little.  It worked well and the charge nurse was able to get the job done.  After this trauma her foley catheter was removed (quick ouch) and by this time she needed some cuddles.

With a little more angst we moved her to my lap and Melia and I decided it was time to take a nap.  As we were going to sleep the echo tech came into do another echo.  She handled this beautifully and was able to stay in my lap the whole time.  She and I slept together in the rocking chair for about an hour.  Things were going great and then all of the sudden she woke up crying.  It took a move to the bed and another dose of pain medicine to calm her down.

That has been the pattern for the day.  Moments of happy, talking, wiggling around and then outbursts of tears.  The trouble is she is two and just adopted from China in January with limited English.  It is very hard for her to tell us what the tears are about...pain, an itch, a piece of tape pulling, constipation etc... So, we are trying our best to figure each other out.

The other issue Melia is having on day one is peeing.  She has not peed since the catheter was removed this morning.  The doctors have ordered Lasix, a medicine that causes her to urinate and we hope this will help get rid of excess fluid.

This evening Ryan and I took the big kids down to the cafeteria and ate dinner with them and Grammy and Grandpa while Nannie and Poppie stayed with Melia.  It was good to connect with the big kids about swim team, playdates and normal life stuff.  While we were eating Dr. Hammel came by to see Melia.  My parents did a great job of getting the information on her.  He told us that the echo performed earlier today to check her heart function was unremarkable and looked good.  She has a flow gradient of 25 or 28 across her PA Band and this was similar to what it was when she got out of surgery.

So, tonight we have a few friends visiting with their newly adopted son from Africa and then it is off to bed after evening medicines.  She just recently started pulling at Ryan and my hand to scratch her chest near the incision.  She "found" her incision tonight and is curious about it.

We are definitely moving in the right direction and thankful that Melia is doing better with each hour that passes.

I can not end this post without giving God thanks for all he has done...

~peace, peace and more peace
~resilient daughter
~skilled hands of our surgeon
~caring nurses
~countless texts, emails, phone calls, fb messages all letting us know we are loved, cared for and prayed for
~grandparents that never stop giving
~my amazing husband, best, best friend and the father of my kiddos.  He is too wonderful for words
~no left ventricular failure
~God bringing her BP up
~a hospital room with a big window to let the sunshine in
~Hallie reading books to Melia
~Artwork for Melia from brother and sister
~dinner with my big kids
~music that calms fears and tears
~a qualified hospital 20 minutes from my house
~cell phones and text messages to stay connected
~when Melia and I understand each other
~when Melia calls out for mama and daddy
~when she pulls my hand to her chest to scratch it
~prayers with friends
~seeing Silas and Melia hold hands with each other
~medical knowledge

waiting room

ryan and i are sitting in the waitng room at childrens in the cardiology waiting room while the surgeon is placing a pulmonary artery band around th artery that is currently taking  blood from her left ventricle to her lungs. he is placing the band so that the left ventricle has to work harder to prepare her for the bigger double switch surgery several years from now. the surgeon gave us wonderful reassurance that he expects melia to do well and recover quickly. i plan to write more specifics when i get to a real computer...not just my phone. just got a call from the surgical nurse that melia is doing well and the band is on.

A little over a week away...

We are a little over a week away from Melia's first heart surgery.

I shared an oh-so-sweet moment with Melia this past week.  We were sitting on the porch swing, watching the water and eating ice cream cones together.  We were just watching the water and Melia laid back against me.  After a few moments of silence she looked up at me and quietly said, "Mama."  I thought, "Yes, dear one.  I am your mama.  You can trust me because my love is unconditional and complete."

With blissful trust she looked at me and claimed me as her mama.  She has no idea what is coming in the next few weeks, but she has quickly learned to trust her mama.  I know she will have to walk through some pain to help heal her heart but she doesn't understand this.  She just trusts our love.

As most parents have learned, parenting opens up our eyes and gives us a glimpse of what our Heavenly Father's love is like for all of us.  So, this moment with Melia reminds me that even though I don't know the outcome for this surgery or the ones that will follow, I can lay back against my Savior and breathe.  I can trust fully in his love for me, my marriage, my children.  If painful moments come, I can still trust that He has bigger plans and even the pain has a purpose for good in my life and my children's lives.

This song captures the essence of our porch swing moment and how it so sweetly reminded me of my Father's love...

Happy Birthday Melia

Today Melia turns 2!  We celebrated her birthday with grandparents this past weekend.  I'm not sure she understood the whole birthday concept.  She couldn't quite figure out why mommy was so happy to fire flickering in front of her face and she was not all that interested in opening her presents.  Fortunately, she has two brothers and a sister that fully understand birthdays and were willing to help her figure it all out!

In the few short months she has been home with us Melia has brought us so much joy!  She is filled with affection for her family, smiles and giggles every single day.  She has started saying two word sentences like, "Daddy shoe" or "Mommy noodle".  Melia loves to play at the park and be outside in her cars.  Her favorite foods right now are noodles, eggs and sausage!  She is not a very big fan of sweets so her mommy eats those for her!

What a blessing to know and love this little one!  Happy Birthday to my baby girl!!!  I love you sweet Mei Mei!

Second Surgical Consult

Today Ryan, Melia and I met with our local surgeon to further discuss Melia's heart condition and the recommendations he had for surgery.  Previous to this appointment our local cardiologist had contacted three other physicians from around the country and gathered their opinions on whether or not Melia's condition required surgical intervention.  The vast majority agreed that corrective surgery is her best bet at delaying or preventing heart failure down the road.

With that in mind, I was still not convinced that surgery was the right answer.  We have a very active, joyful little girl and my thought was why fix something that isn't broken.  So, I prayed over and over that God would grant us wisdom to make wise decisions for our daughter and that he would help us know what to do.  I also prayed that we would be like-minded as we left our appointment today.

I am so thankful that God answered my prayers today.  Dr. Hammel, the pediatric cardiothoracic surgeon in Omaha explained to us that Melia very clearly needs intervention and suggested that we pursue getting started sooner rather than later.  He was confident, but not cocky.  He was calm, honest about risks and hopeful that Melia is getting the interventions she needs at an early enough age that it will make a difference for her life.

Here are the facts...
...people with this heart condition usually die from it.  They die from heart failure.  Sometimes that is early in life and other times it is later (like 40, 50 or 60) but almost all (if not all) will suffer from heart failure.
...a corrective surgery is the current, best option for patients.  It puts the workload of systemic pumping back on the left ventricle and therefore reduces the risk of right sided heart failure.
...at birth both ventricles have the same pressures, but shortly after birth the demands of the systemic pump create very different chambers.  In Melia's case the right side is getting a thicker muscle and the left side is weaker.  The early a corrective surgery is done the better chance that the left ventricle can actually take on the workload of being a systemic pump.
...in Melia's case her right side is already starting to fail.  It is a very, very mild failure, but a failure nonetheless.  Instead of pumping 2/3 of all the blood out with each pump it is only doing 1/2.  And, because she had lived this way for almost two years, the left side of her heart is very weak.
...to prepare her heart for a corrective surgery, called a Double Switch, she will have to undergo two PA Banding procedures.  The Banding of the Pulmonary Artery will make the left ventricle have to work harder and strengthen it so it is prepared to take over as the systemic pump after the Double Switch.
...The PA Banding surgery is not really a technically difficult surgery but Dr. Hammel does have three concerns:  1.  If the band is too tight the left ventricle could acutely fail (this is a life threatening situation)  2.  If the left ventricle decides not let itself be retrained it could fail down the road (teens or beyond, this would create a need for heart transplant)  3.  Not getting the PA Bands done fast enough and the RV failing before we get to the Double Switch.
...although that is scary information Dr. Hammel feels very good about her current health and believes that if we do two bands over the course of 2-3 years that Melia's heart will respond well.  If is does that a Double Switch surgery will be in her future in 3-5 years from now.
...Although it would have been better to have corrective surgery shortly after birth, the fact that she is only two is good.  Teens and certainly adults do not respond as well to banding and the double switch.

So, with all this information we have decided it is in Melia's best interest to move forward with a PA Banding in about a month.

Believe me I DON'T WANT TO DO THIS, but right now I am not scared.  God's faithfulness is steadfast and I wholeheartedly believe that He loves Melia more than I ever could.  He placed her in this family, at this time because He knew it would be best for her.  So, with confidence in God's love for us and her we willingly place our daughter's surgery, life and future into the loving hands of her Creator.

One of my friends encouraged me with words she received recently about her daughter.  She was wisely told, "God created your child FOR HIM."  So, whatever His plan is I have to submit.  She is not mine, she is His daughter and I just get the privilege of loving on her and being her mommy for whatever time He gives me.  I HOPE, HOPE, HOPE it is for a VERY LONG time, but His will, not mine be done.

So, with that information I would be so appreciative of your prayers for our family over the next few months.  Here are some specific prayer requests:
~ a successful surgery in May with no complications.  That she would not need a ventilator after surgery and that her left ventricle would not fail but respond to the banding well.  That she would not die from this surgery.
~that Melia would not be afraid and that she would not have pain (aside from what is good for her to limit her activity).
~that her siblings would not be afraid and that this would strengthen their faith in God, their prayer life and their love for each other.
~for the surgeons, nurses and anesthesiologists skill.  That their personal lives are peaceful and restful, so that they are not distracted or tired on the day of her surgery.

Thanks in advance for your prayers for Melia and our family!