Sunday, February 24, 2013

CHF Heart Walk 2013

Yesterday we attended the 10th annual Walk With the Heart of a Child put on by our local Children's Heart Foundation. It was our family's second time attending.
Just like last year, this year was unforgettable and tons of fun!

This year we went all out. We ordered shirts from Neil's Uncle Cal. He owns a business in Utah and we were grateful to have him and his daughter Amber help us get these done. I designed the front of the shirts and they just printed them on white shirts for everyone. They even were kind enough to do just one shirt that said "Heart Warrior Mylah" for our precious girl!
 
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The shirt had Team Mylah on the top and her heart logo in the middle
with CHF Heart Walk 2013 on the bottom.

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 We also ordered a custom banner from a local print shop.
I designed this as well and it turned out amazing! 
Here are our nieces Bella and Hannah helping Rylee carry the banner, they were so cute leading our team in the walk.

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I am so grateful to those who are willing to help us and support our family in creating awareness about CHD's and encouraging Mylah in her fight against TOF.

Here is our whole Team, we had a wonderful turn out!
{Back row, L to R: Wade, Steve, Kyle, Burton, Neil.
Second Row: Kim, Jessica, Margaret Ann, Geri, Hailee, MaryAnn, Mylah, and me.
Third Row: Jonathan, Carson, Mason, Austin, Jakob
Bottom Row: Bella, Hannah, Dallin, Rylee}

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We began the day with a quick Jamba Juice/Starbucks breakfast, taking pictures with the various characters who show up for the walk, and dancing our hearts out to Gangnam Style! 


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After pictures and fun, we lined up to begin the walk. Children's Heart Foundation showed a video about Camp Mend A Heart. It was a cute video. Only children with heart problems attend this camp along with support from Camp Counselors. The camp is actually in a small town like ours only a little bit away from us! Mylah will be able to attend when she is seven! We can't wait for her to experience this and create lasting friendships with kids who suffer from similar heart defects.



The countdown to the walk began and my heart was overwhelmed with pride. With lots of cheering, smiles, and laughter we stared our walk in honor of Mylah and all the other Heart Children suffering from heart defects! I am always so close to tears when I participate in these walks. My daughter is a Heart Hero, she's taught us more than we could ever imagine learning from such a small precious girl, and we are grateful to watch her grow and thrive and to have her here. Too many families were walking without their hereos. I honestly could have cried the whole time. 


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Probably my most favorite part of the whole walk was seeing Mylah being carried by her Uncles, Aunts and Grandparents. They all love her so much, and if it weren't for them, we couldn't have made it through her two surgeries. They are and were such an amazing support to our family! 

Mylah and her Uncle Wade (Neil's older brother) 

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Mylah and her Uncle Kyle (Neil's oldest brother) 

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Mylah and Aunt Jessica (Wade's wife) 
{Side note: This photo ended up being used on the Children's Heart Foundation's Facebook Page!!}
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Nothing brings me more joy than to see Mylah enjoying the walk too! She loved all the characters, music, and seeing all the sights around the mall.
 She did spend a few minutes in her stroller making silly faces! 

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The walk didn't take too long, afterwards we gather at the staging area to hear the winners of the different prizes and raffles. Our lucky nephew Mason won a Ninetendo 3DS gift set! It was fun to see his family win a prize. We have never known anyone who won anything!

We also took a few pictures of our individual team members and Mylah. Kyle and Geri had to leave early and so did our friend Kim and her son Jonathan. We were sad that we missed taking a picture of them with Mylah! 

{Papa and Grandma H.}

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{Jakob, Mylah, Jessica, Wade, Mason and Hannah}

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{Grandpa and Grandma C. - Mylah was a little grumpy, so this was the best picture we got with them!}

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The walk was a success, we can't wait for next year!
Thank you to everyone who donated to Team Mylah and those who came and walked with us. You will never know how much it means to our family. I am so thankful to watch Mylah grow, she is here thanks to her amazing Cardiologist - Dr. Thomas and her amazing surgeon - Dr. Ciccolo. They keep her healthy, happy and growing. We are blessed beyond words! 

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Tuesday, February 12, 2013

CHD Awareness Week - Story #6: Heart Warrior Cayson

This family is also special to us. They are a family who lives in the same town we do! We love Cayson and are grateful to see him growing and thriving. I am blessed to be good friends with his Tameran, his Mom, and am grateful she chose to share his story. Here's a bit about Heart Warrior Cayson:



Cayson is our third child. He was born in Cedar City Utah November 13th, 2002, after a long hard labor. They almost took him C section because his cord was wrapped around his neck. I finally was able to have him normally. After 2 healthy children we took it for granted that he would be healthy too. But after the pediatrician came in to check him out in the hospital, they wanted to do a echo in the hospital because they detected a heart murmur. We still weren't too worried about it. And they said they would call us with the results. When they called they said everything was ok. So we breathed a sigh of relief for a few days. But he was such a fussy baby, and he wouldn't nurse, and acted like he was in pain all the time. I knew something else was wrong, and kept taking him back to the doctor. The doctor thought I was over reacting, and I overheard him telling his nurse this one time. But mothers intuition told me to have him to check his heart one more time. So he said ok, and I'll never forget the look on his face. He realized he had not read the first echocardiogram right, and had made a Big mistake. He got us an appt up at Primary Children's hospital that same week! The cardiologist asked us if we were cousins,we said NO, and he said if not then because of our sons specific heart condition (supra valvular aortic stenosis) that he has Williams Syndrome. Williams Syndrome is a chromosomal defect where he is missing part or all of his 7th chromosome. They all have similar facial features, and it effects their mental function, and they are musically inclined, most of them are small, and they have "talk show host" personalities, they are very endearing children. He has been a joy to us! The health problems are worrisome ,because missing his chromosome effects the elastin in his body which makes his arteries tough, and as he grows they get smaller. He has many stenosed arteries going to many parts of his body. He has so many I wont name them all. The most severely stenosed artery is the descending aorta which is the long artery that goes through your stomach. And his renal artery which is the one going to his kidneys which in turn gives him high blood pressure, and could affect his kidney function at some point. The doctors say he has so many stenosis' that operations to put stents to open all of his arteries would not work, because he has too many. They see him every 6 months, and we are taking it a day at a time monitoring his blood pressure, and he is on 3 blood pressure medicines. About a year ago he was lethargic, and couldn't function, so we took him to the hospital, and after about a week in intensive care. They put a stent in to help open and return blood flow going to his brain. It was a success! He has been great since then! And a month after the surgery he went on a Make a Wish trip to Disneyland which was a highlight of our families lives. We love our Cayson, and feel blessed for every day that he spends with our family. We know his congenital heart disease will make his live shorter than we would like. But we are just grateful Heavenly Father entrusted this angel in our care for as long as we have him.

Monday, February 11, 2013

CHD Awareness Week - Story #5: Heart Warrior Lydia

This post is particularly special because Neil and I met Lydia and her parents in the hospital after Mylah's second surgery. Britney and I have stayed in contact and kept close after meeting. It's been fun to watch eachother's children grow and to have become fast friends. Lydia and Mylah also share the same miracle working Heart surgeon - Dr. Ciccolo. 
We are blessed to know this wonderful family!
Here is sweet Lydia's story:


My baby girl Lydia came into this world with quite a scare! It was only one short
hour from when my water broke to her arrival. Things progressed too quickly for
the doctor or an anesthesiologist to arrive. This left me with the nurse working to
deliver my baby. When the cord was wrapped too tightly around her neck, the nurse
had to reach in and clamp off the cord while my husband Jaren assisted to cut it
all while she was still trapped inside the birth canal! Finally, she emerged and was
totally blue and lifeless. This bad delivery would ironically, turn out to be the first
of many miracles we experienced with our Lydia leading us to the discovery of her
heart condition.




The nurses tried for several minutes to get her breathing. It seemed like forever,
but those few minutes of dread turned to joy when Lydia began to cry. She was all
blue from the delivery, so the neonatal doctor came and checked her. After being
checked, we were told everything was good and that she was just blue from bruising
with a fast delivery. Jaren wasn’t satisfied and kept asking about her coloring, and
everyone said again, the neonatal doc passed her off and it’s just bruising. Our next
miracle came after my husband held her all night and observed her coloring as it
would slightly change then return. He felt it was an oxygen issue and insisted that
the Pediatrician take her to test her oxygen. Sure enough there was a problem with
Lydia only having 81% oxygen. She was admitted to the NICU 15 min. later.




From there they discovered she had pulmonary hypertension, and her heart
condition wasn’t found until after the third echo. Even then the doctors said
they almost missed it. She has TAPVR to the Coronary Sinus or Total Anomaly
Pulmonary Venous Return to the Coronary Sinus. This means that the four veins
that should hook to her left Atrium were hooked to the coronary sinus and pumping
deoxygenated blood through her heart. The only thing that was sustaining her was
a tiny hole in her septum that baby’s hearts have in utero that hadn't closed yet.
This allowed the blood to shunt over and mix with enough oxygen to help her get
by. Eventually, this hole in the septum of her atrial wall would close leaving her in
an emergency situation that creates problems like permanent damage, or death,
as all deoxygenated blood would be pumping throughout. The surgeon said she
is a miracle and that her heart problem usually goes undetected until there is an
obstruction or major problems with the baby! In fact he told us that she's the second
baby he's had that got pre-diagnosed before there was an obstruction, or before the
baby got really sick. Her heart defect is extremely hard to catch because the heart
compensates helping the baby get by. The veins are very tiny and posterior and hard
to see on the echo, and when you listen to the heart it doesn't manifest a murmur!
We can now thank my traumatic delivery for bringing it to the surface, yet another
miracle!!



The surgeon Dr. Mike Ciccolo was amazing and fixed her heart a better way than
how they used to a few years ago. Normally, all the veins would have to be clipped
and re-sewn on and as she grows and she would need multiple surgeries. Instead,
he closed the atrial hole, and created a hole through the coronary sinus to the right
atrium so that her heart can still get oxygenated blood even though her heart flow
is different from ours. With this type of surgery she shouldn't need future surgeries.
The only risk is if there is a narrowing of the veins that were the anomaly. We see
Lydia’s cardiologist every couple of months and at the last visit he said she looks so
good that she won't have to return for 6 more months. The cardiologist will follow
her throughout her life.



Later I will write a book of all the ups and downs of her in the hospital, and the
blessings we were granted, other miracles, fasting, prayers, priesthood blessings,
trials, and lessons learned while living at the hospital when you have 4 other kiddies
at home. I'm glad it's over!! Little Lydia was able to come home two weeks after her
surgery. This was so amazing. She cruised through her milestones to get checked
off, but going through it seemed like long hours and heart ache as Lydia suffered
ups and downs in the hospital. We tried our best to comfort and support our heart
warrior. Seeing my baby with her chest open and watching her heartbeat for a few
days while the swelling went down was crazy, scary and intense. We held her hand,
held the pacifier with each bedside procedure, and cried when the pain wouldn’t
subside as her chest was open and the meds were not taking. Lydia looked at me
with tears in her eyes and a tube in her mouth and moved around when she wasn’t
supposed to and it was devastating to see my infant struggle like this! My husband
and I became frustrated and scared when her scar oozed up and got bad, and re-
teaching her to eat again took a lot of patience.



I learned to pray more sincerely, love more genuinely, to trust in the Lord, and to
feel deep graditude for my blessings and for those who extended service to me when
I needed help and support. My mom and mother-in-law attended to my other four,
so I could always be at the hospital. I had friends drive my kids to and from school,
meals, gifts, flowers and more were dropped off randomly and it lifted my spirits
so much. I'm so grateful for all of these acts of kindness, the miracle of life, and the
hand our Heavenly Father has in all of this. I cherish each day with her and she is a
great joy to our whole family. May we all find time to see the miracles in our life!!



Love Lydia’s Mother always,

Britney Jensen

Sunday, February 10, 2013

CHD Awareness Week - Story #4: Heart Warrior Elizabeth

 

When I went to a Dr. appointment at 21 weeks I had an ultrasound done that told me the exciting news that I was having a baby Girl! During that visit I also received the news that she had a heart condition called Hypoplastic Left Heart Syndrome (HLHS). At that point we were not told anything about the condition other than being told we needed to go see a pediatric cardiologist about the issue.
While visiting the pediatric cardiologist he confirmed the information that we had found online. The left side of her heart is underdeveloped and does not pump blood. While in the womb God allows all babies to have holes in their heart that allow for rerouting of blood flow if a condition like this is present. The problem comes after birth when these holes begin to close off. There is no set time when this happens so right away she will be taken and given a drug through her umbilical cord that makes her body think she is still in the womb. This will keep the holes in her heart open but will most likely cause her to stop breathing since that is not needed while in the womb. Because of this she will also most likely need machines to help her breath.
After gaining a little weight she will have her first surgery (should be within the first week). This will be the first of 3 surgeries that will pretty much reconstruct her heart. The second surgery should take place between 3-6 months and the third between 18 months and 4 years. Texas Children's normally does this surgery around 3 years old.

Saturday, February 9, 2013

CHD Awareness Week - Story #3: Heart Warrior - Yasmin

Hey There. My name is Yasmin and I am 27 yrs old, and I was born with a heart condition called Tetrology of Fallot. I have had two open heart surgeries and I had my first one at the age of three and my second at the age of twenty.

When I was born, my parents were wondering why I wasn't a pink baby! I was a “blue baby” and I stayed blue for a very long time. My Drs ran all the tests such as X-rays, ECHOs, EKGs, and CT scans; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had VSD (Ventrical Septal Defect also known as pinhole) and ToF (Tetralogy of Fallot).

I was closely monitored while growing up and I was fine until the pinhole in my heart didn't close on its own and the Drs had to surgically close it. My first surgery was at Children’s Hospital in Los Angeles in 1988 and the Drs closed my small VSD (ventrical septal defect) and they put a homeopathic conduit it to connect the left and right side. I was told that because I was growing that the child’s size wouldn't fit and this is why the Drs put an adult conduit in. On a return visit for a check-up I got the petal stuck on the sink (they had the ones where you stepped on the petal and washed your hands), and so they moved us to a new room. In the second room I was playing on the bed and my Dr had his hand on my head so that I wouldn't bump it. The bed had a storage area under it. I was doing great, and the Drs said ” I would have to have a second one at the age of thirteen” but I didn't need it then because I was growing perfectly.

By the time I was twenty I was already showing signs of needing another open heart surgery, and the reason that my Dr and my parents came to that conclusion was because I was pale and my blood pressure rose (it was 300/91, or 200/90). I was 20 years old and on blood pressure meds. In November of 2005 I went in for my second open heart surgery where they replaced my conduit and they also put a metal stent in. They used the stent to widen my arteries that were small and narrow and they also replaced my pulmonary valve. This was performed at UCLA (University California Los Angeles) by my surgeon, Dr. Hilal Laks who did a wonderful job. However, during my second surgery I had a few complications: like my heart was sticking to the sack that holds it in place so it doesn't hit the ribs, and that was bloody. Then a few days before I was supposed to be released my white blood cell count flew through the roof. I then somehow had gotten an infection and my left lung filled with fluid and collapsed. The Drs drained it and I was released November 25,2005. a.k.a Thanksgiving Day.
am currently doing great health and spirits.
I have just married my soul mate on July 10, 2010 and living life one step at a time.
I found my heart as a blessing, and it has taught me compassion, love, and wisdom.

Friday, February 8, 2013

CHD Awareness Week - Story #2: Heart Warrior Stella Raye


On March 17th 2012 at 9 am I was on my way to SMR to have our 3rd child another precious girl! daddy and I were so excited and ready to get the labor and pregnancy over with. Well I was scheduled at 9 am but they didnt start my induction till 3:30 after labor was started it was an intense 12 hours and 1 minute along with my mom and husband watching Die Hard movies...lol finally at 3:31 am my littlest princess Stellla Raye was here (one push and she was out!...yay) we thought we was gonna have the normal 1 night and then discharged boy was be wrong.. i got to hold her for about 2 minutes then she was taken to get her vitals and cleaned up. well here is where it starts where we found out our baby girl wasn't as healthy as we thought she looked perfect but was alot smaller than our older 2 children (Abigail *5* was 7.8lbs Darick *3* was 7.11lbs) Stella weighed in at 6.7lbs and 18 inches long well the ped. had checked her while we got some rest, i was due to have my tubal done the morning after but they came in told me i had to get up walk around, potty.. (i couldnt walk still had the epidural in) so they wheeled me into the restroom then about 15 minutes later they came in and said my surgery had been cancelled i was confused but said "OK' and took thee epidural out. a few minutes later the on call pediatrician came in and started telling me he had heard a loud heart murmur and thought it could possibly be something a little more serious which woke my husband up from a sound sleep, so we waited and my OB came back in and said as long as i felt ok i would be discharged (after about 7 hours total after having her) so we waited for the transport team, my mom and step-dad showed back up to see her before transport got there needless to say we didnt get to hold her again until late that night once we got to WVU CH where we was met by a student (now Resident) and told us all her test had been done and that Stella had TOF So we spent that night giving her a bath, getting her dressed, then we went over to the RMH while Stella was in the NICU, we went straight back over first thing the next morning and we ewre told at the NICU desk that she had been moved to the NICU Step-down, where we waited for rounds, we were told she had a haziness in her left lung that they were watching so she had frequent Xrays, by the 3rd day in step-down the haziness went away and we were told now it was up to getting her feeds up so we could go home. Day 4 was strictly pumping and keeping her feeds up so we wouldnt have to worry about an NG Tube....Also on day 4 she got to meet both Grandmothers, her Uncle Danny (also TOF) her Ompa (grandfather) and her Big Sister, brother was 2 months too young to go into the NICU! :( finally on Day 5 we got the best news she had passed her carseat test and that we get to take her HOME! pictures were scheduled, videos were watched monitors were unhooked and we had our newest princess on our 3 hour drive home!!! well we totally weren't prepared for a 6 lbs baby girl all i had were 0-3 clothes no NB so once we got back into our hometown we had to make a stop for some baby clothes and such So we met at a local restuarant where our Son finally got to meet his baby sister and afterwards Ompa brought Abby and Darick home where we were finally together as a family! She has done great Excellent nurser, growing, no tet spells and just blended in with the rest of us! :)






We went back for a check up on 4/23, Dr Phillips said everything looked/sounded great as did our appointment on 7/23 which is where they started getting things in motion for her surgery date! about a month later and about every last one of my nerves lol w e finally got her date scheduled 9/25/12 before Cold/flu/rsv season, the time seemed to fly by waiting for that day to get there and about 3 days before the day she started having some tet spells, i was thankful surgery was set for that following Tuesday even though the drive was miserable i cried off and on as we headed for pre-op and all evening, night and morning before, i cried up until i handed my baby girl over to Dr. Gus' team at 9am but after that i felt calm with a tightness in my chest that did not go away until i seen that little man come out of the PICU doors at 2pm, she was out and doing great it took about an hour and a half before i finally got to see her and it was worth it!!! i hated seeing her tied down, sedated and tubes and wires coming out of every part of her but the worst was over, now onto the healing it was everyday something new started to come out of her 9'26 was the breathing tube, 9/27 was the L/A line, then it was the chest tubes then the caudle 9/28 she had to be put on CPAP for less than 12 hours to clear out her lungs, Finally on 9/29 my mom and his dad brought Abby and Darick to see us and Darick asked us "why was baby sister dead??" remember she was laying on her back sleeping hooked up to monitors and to a 3 year old that could be pretty scary seeing baby sister that way but daddy quickly went over and pick her up waking her up so brother could see!!! shortly after they left to go back home we were being moved to the Peds floor were she was hooked up to the portable device and we could walk her around (this was also the day she came off of the O2) we were there until 10/1 with nothing but improvements, so on Monday they came in to put the numbing cream on to remove the Pacer wires then they took out her Art line ,ECHO, (she still had a very tiny VSD) and we got to take our little warrior home... check ups were scheduled for 10/15 with the surgeon they checked her incision and said it looked great, then had to go back up on 10/29 same day as "frankenstorm" hit our area but the appt was quick Dr Phillips listened to her said he didnt even hear a murmur, and was gonna have us back in 3 months but decided since she was doing so great that she didnt need her Synagis and wanted us back in 6 months!!!







well i guess we got punished for being so happy about the 6 month check up on 9/22 thanksgiving we rushed stella to our local ER with a temp of 102 and respitory distress with IV in place breathing treatments done, Steriod given, O2 on she was tested for RSV which came back positive so we waited for transport, a friend of mine (another TOF mom) lived 20 minutes away from WVUCH and when she seen that Stella was being flight lifted there she went and waited for her until either us of my mom got there, we got to her at 5 am (i had to pack for 5 people) and she was happy in mawmaws arms, we were there 6 days and moved to 3 different rooms while in Peds 4 days a nurse notices that her SATS were not improving with chest PT, Breathing treatments and suctioning, so he called Dr Lancaster and he ordered an xray, i had stepped out of the room for a few minutes while Frank was in with her i got to the doors and seen Dr's and lab techs y her room so i quickly went back in, i was pulled into the office to view her xray and was told she had a PneumoThorax (collapsed Lung) and would have to have another chest tube placed :( well back to the PICU we went! chest tube was placed by Stella's ped. cardio. surgeon and we waited and waited for her lung to get better 6 days total, she went from O2, to hi-flow blended breathing treatment after breathing treatment, antibiotics (thought she may have had Pertussis also but that tested Negative) finally chest tube was water sealed and pulled the next day after 6 days! then we had to keep her feeds up, wean her off of the O2 which was tough but finally after 2 weeks we got to go home!!!!!







Now she is doing great and has started with PT, and her Synagis shots per Dr. Phillips!

Thursday, February 7, 2013

CHD Awareness Week - Story #1: Heart Warrior Eva

 Happy CHD Awareness Week! 
Last year I started what will be a yearly tradition for Mylah's blog. I started sharing other Heart Warrior's stories during CHD Awareness Week. This is our way of spreading awareness and stories and learning about other families who live with the same things we do. This year I have the participation of the sweet Heart Families of these Heart Warriors. I am so excited to share all their stories! 

Here is the very first story about Heart Warrior Eva, shared by her Mom , Jennifer:


Five years ago, I sat holding my youngest child in a desperate holding pattern. My husband and I were counting the hours and minutes until her life saving operation and trying to keep the mood light by watching Sunday night college football. Boise State and Nevada were trading scores in a game that seemed unbelievable…four overtimes, and a final score of 69-67, Boise State on top.

In retrospect this anomaly of a game was quite a blessing. While neither one of us had any interest in either team playing, we still found conversation in the tit-for-tat scoring of the two teams, and in the game play that seemed endless. It diverted our attention from the gravity of the situation, as our daughter, Eva, lay listless in my arms. She was fully knocked out after days of propranolol and morphine injections intended to keep her from having her repeated and severe tet spells.

In between scoring drives I would gently shake her, or roll her from side-to-side, hoping to arouse her one last time before midnight, the dreaded time of “no return” for a last meal. I had been trying for hours in my hopeless attempt to wake her from her coma like state, but was not having any success. My anxiety increased, as the minutes ticked by and the hour hand crept closer to the 12. In my mind the only thing I could provide for Eva, the only way that I could mother her, was to feed her, and even that had been taken away.

The rest of the cardiac intensive care unit was quiet that evening, except for the occasional beeping of the alarms, or complaints of an unhappy baby….and I took peace in that too, yet my tears continued to flow. They worked into a steady stream, until finally the clock’s hands pointed to the 12, and I knew that my time to help Eva was over. I reluctantly placed her in her crib, adjusting her so that the wires and oxygen tubing would not tangle up. I gave her a few more kisses, and smoothed the short baby fine hairs on her head. Hipo followed behind me, and then took my hand, and we headed to our assigned parent room. It would be an early morning for us.

I don’t remember much from that night. I imagine it was a fitful sleep, but I do remember the alarm sounding, and it was time to go, time to sign away our daughter to the doctors who would mend her broken heart. I wondered if in time, my heart would mend too.

While I had muttered silent prayers that Eva would awaken from her deep slumber the night before, I prayed in the morning that she had remained blissfully asleep, unconscious to what was about to happen, and the probable gnawing feeling in her stomach since she hadn’t eaten in many, many hours. Luckily, my prayers had been answered. We arrived in Eva’s bay to find a sleeping baby. I asked the nurse if she had managed through the six hours we were gone without a tet spell, and I was assured that she had. I was hopeful that this was a positive sign for the day to come.

We immediately began signing the plethora of papers that would permit the hospital and doctors to repair our gravely ill child, and then we talked with anesthesia. A female, Eastern European fellow came to talk to us, and informed us that the doctor would come to pick Eva up for her surgery in a few minutes, and to not be “alarmed” as he would just carry her away. I found this discovery oddly comforting, and sure enough, when the anesthesiologist came in he gently scooped her still listless body from my arms, and carried her to the OR. While my heart was breaking into a million pieces, and the tears flooded my face, I felt a still serenity, and calmness that wasn’t expected as the kind doctor carefully carried my miniature child in his strong arms. I felt a loving kindness there, and in my heart I knew things would be alright.

We found ourselves in the surgical waiting room, surrounded by other worried parents and families. I found myself people watching, having empathy for the families with worried expressions and wringing hands. I found myself hoping and praying for positive outcomes for them as well. I passed the time by e-mailing friends and family, people that I had come to rely on for support. Nearly two hours into our wait, the first report came. They had finally gotten Eva on bypass. Once on the operating table, she had apparently experienced tet spell after tet spell, making it nearly impossible for the doctors to place the many lines in her veins that would be needed to sustain life. Each tet spell caused her vessels to clamp down, diverting the much needed oxygen to those important organs like her brain, and lungs. I found myself shaken by this news, but held on as I still felt a calming presence somehow telling me everything would be alright. After all, they had managed to get her on bypass – and from here, her surgeon could work his wonders.

Several more hours passed, and we were finally greeted by her surgeon, who calmly and quietly escorted us to a quieter room, where other people watchers would not be able to overhear the details of our own family’s ordeal. First he said that she was off of bypass, they were closing her up, she would need to remain on the ventilator, but that over all things had gone well. He explained that he did not repair the hole between her atriums, and couldn’t find one of the smallest holes between her ventricles during surgery, although he had successfully patched the very large hole. He also explained that her pulmonary valve was not salvageable, and that he had to remove it, and widen her right ventricle outflow tract by placing another patch, in order to facilitate the flow of blood to her lungs, but overall he was happy. She had done well. We would get to see her in a few hours.

The unimaginable relief I felt was mixed with a certain anxiety, a yearning to hold my baby, to touch her and see her chest rising with every tiny breath. The time between our visit with the surgeon and our reunion with Eva seemed the longest, a moment for sure, but still a moment that drug on for an eternity. When we finally laid eyes on her, she was laying prone, a large bandage covered her newly repaired heart, and drainage tubes were removing errant blood. Her chest was in deed moving up and down, in rhythm with the loud whirling of the ventilator parked next to her bed. Two columns of IV medicines sat at her opposite side, providing drugs and nutrition, and several other lines fed into her body to record data, provide emergency pace-making, and supply quick boluses of medicine. There she lay, beautiful in perfection. I doubt many could see it, beyond those lines and tubes, beeping machines and wires, but what I saw that day gave me hope. My daughter’s broken heart had been repaired.

While her recovery was not seamless, it was quick. A collapsed lung, and fluid around her heart set her back only slightly. She was home before the week was up. I watched in amazement as the weeks and months passed, and my sick little baby developed into the rambunctious toddler she is today.

Today is a celebration! I celebrate five years of Eva’s repaired heart. While I know Eva’s repair was not the end of the road for her and her heart adventures, it closed the chapter on a stressful beginning to life. She will need further intervention, but by God’s grace, and those talented, loving, wonderful doctors, she is with us today, two years later.


Eva Post Op:



Eva and her Daddy

Wednesday, February 6, 2013

CHD Awareness Week

Tomorrow is the beginning of CHD Awareness Week! Last year I decided to share stories and blogs of families who deal with CHD's and how it changed their lives. I just wanted to share other's stories. 

This year I have had stories emailed to me from parents of CHDers and I am so excited to share them with you! 

Tomorrow will be the first one and I can't wait to start creating awareness this year! Remember, CHD's can happen to anyone. Don't let it happen to your family, be aware of the signs, have a pulse ox done on your baby before they go home. It could happen to anyone. 

Happy Heart Month and welcome CHD Awareness Week!!

MRI

Today Mylah had an MRI to map out what we will do in the near future for her heart health. Currently her left ventricle is slightly ...