Praying for Marley

Heart Walk & Mended little hearts...

2010-06-27T21:21:00.001-07:00

Update time! Hello I hope every one is doing well. Marley is doing spectacular! She's growing like a weed and making leaps and bounds on her developmental mile stones. Her doctors are still watching her SVC very closely because she does still have some narrowing, but everything else is working perfectly. I have to admit something, I became the crazy Mom that takes her baby to the pediatrician for teething! Marley just wasn't being herself and I feared the worst, so I took her to the doctor. The nurse practitioner just laughed at me when she was assessing Marley. What can I say she's always been tricky.

We celebrated Marley's first birthday on June 19. We had a huge celebration and my sweet angel got to blow the candle out on her very first birthday cake(with some help from her Mommy). This was my goal for sweet Moo Moo when we came home from the hospital, that by her first birthday she would be "appliance" free and she is! Marley also got her mickey button(feeding tube) out May 27. It was her gift to her great Momaw who turned 80 that same day! God has been very good to us.

Trach out and another heart surgery.

2010-04-30T23:03:00.000-07:00

Wow, it's been a really long time since I've updated Marley's blog, imagine that! So since the last time I updated this several things have happened.

Marley followed up with all her doctor's (she sees about six regularly), and we continually received great news from each doctor. Marley had her follow up appointment with her cardiologist and ent in February, they both gave us nothing but great news! Dr. Lundt told us she didn't see anymore heart surgeries in Marley's future and even took her off one of her heart medications! Dr. Siemen's (ENT) told us Marley is doing so well off her vent that he would like to schedule her a picu stay to get her trach out! I couldn't believe it I cried tears of joy. Finally nothing but great news for my sweet baby.
Marley ended up getting put back on her heart medication, she failed coming off of it. She started desating, being cranky, and not eating well. So Dr. Lundt decided weaning her would be a better way of going about it. So after one dose Marley was already back to feeling like herself. The medication btw is viagra. Even with that little set back she was still scheduled Feb 25, to get her trach out.
We went in that morning praying for the best. We were nervous wrecks our last stay in the picu was 9 1/2 weeks and with how tricky Marley is a short stay can always turn into a long stay. But Dr. Siemen's did her bronch and said her airway was completely open! So he put a smaller trach in and said in one hour they could take it out and she would be trach free! Marley Moo didn't even required oxygen or any type of support when they took the new trach out. She is always surprising me with how strong she is. It was so amazing to finally hear her sweet voice again, even if it did scare her for a while. When she cried she'd look around and cried harder because she had no idea what that noise was.
Our short stay stayed a short stay almost exactly 24 hours from the time of Marley's admitting she was discharged. Marley's trach site closed without any problems or infection, but we were sticklers about the care of the trach site. Marley followed up with Dr. Siemen's two weeks later and he told me we didn't have to come back to see him anymore! Now Marley only has 5 doctors she sees regularly. It's always a celebration when Marley is released from a doctor or gets to discontinue a medicine.
Marley did really well for a couple of months and I was starting to breathe easier, when my Mom noticed some veins on Marley's chest that hadn't been there before. We thought maybe it was bruising and prayed it wasn't her heart. Marley's perfusion in her head started to appear diminished and I was sick with worrying. So I took her to her pediatrician and showed him her veins, of course his reply "I've never seen this before, you need to call her cardiologist". Of course something someone has never seen before nothing new for my daughter. So I called Dr. Lundt and she made an appointment for Marley for four weeks out, because she said it was probably nothing. This gave me a little relief, but in the back of my mind I knew something was wrong.
Marley also had developed an exceptionally large head, I really thought she just had the Milligan head, but come to find out not so much. I called Dr. Lundt again and said I just feel like she's looking worse. So she had an appointment the next day. Marley had an echo done, the report not good. Her SVC was completely obstructed and would required open heart surgery and another heart catherization. My heart broke and I tried to fight back tears while Dr. Lundt was talking to me about Marley's condition. She told me she might be admitted today to start her on a heparin drip, but they may let you go home and come back tomorrow. We had to wait on the surgeons to get out of surgery to decide. I'm so glad my Mom was with me, I felt like I could just cry my eyes out, and of course she was there to help me be strong for Marley.
Dr. Lundt came back and told us they were letting us go home, but they would call me with her hospital orders later that day. I was so numb and I had to call so many people and cancel so many of Marley's appointments and with each person I called I think I cried a little more telling them about Marley's new condition. I just couldn't imagine her going through another open heart surgery, and having to recover from all of that again. It hurt my heart. Then all I could think was I never would have let them reverse her trach if I just would have known. I tried to pray my way through these emotions and just be with Marley, but it was hard. I cried while I was rocking her that night to sleep, I knew it very well could be a long time before I get to rock her asleep again. Everything was hard.
At 9:00 a.m. on April 21 Marley was admitted back into the PICU. It was nice to see so many familiar faces, but at the same time we'd much rather had ran into them at Target then in the PICU. Marley went back for her heart cath at about 12:30. Brother Kelvin led us in prayer and I got to carry Marley to the surgery area. I was a nervous wreck along with my family and friends that were there with me. Two hours later we found out they couldn't get in through Marley's femoral arteries because they were too damaged from all her other heart caths in her short little life. So Dr. Kimberling planned to do another heart cath the next day he said he could possibly go through her jugular or her liver. While Marley was being taken back to her room to recover, Dr. Barth came into the waiting room to talk to another family and saw me and came to talk to me. She gave me the greatest news ever, she said along with Marley's other heart surgeon that they should be able to fix her heart during the cath with a stent and won't required open heart surgery. They had placed Marley's SVC in a different location during her open heart surgery, foreseeing this could happen and knew how to prevent Marley from needing open heart surgery again. These surgeons are incredible.
I just wanted to jump out of my chair and scream and jump and cry all at once. This was great news! Now if they could only get in her poor little vessels to do the cath. Marley had a CT that night, it took awhile to get her there because they had to extubate and reintubated her because she had a huge leak around her et tube, and they couldn't get a big enough iv for the contrast. After about a million pokes they finally got an IV. They took Marley to CT and we would find out the results the next day. Of course in truly Marley trickiness they didn't get good pictures, but Dr. Kimberling said he thought he saw where he could get in to do her cath. So Marley went back for her 7 heart cath. We all just prayed and prayed.
About 2 hours later our nurse Melissa called to tell me the best news ever Dr. Kimberling got Marley's stent in! Praise God another miracle for Marley! Shortly after that Dr. Kimberling came in to show me the pictures of her SVC. Her SVC was almost as extreme as her coarctation and her pressures above her SVC were 22 and below was 10. Thus causing her huge head, poor perfusion, and veins on her chest. He said Marley really should have been acting really cranky and eating poorly. She also should have had a terrible head ache. Marley never complained about anything she was sweet just like always, and I believe God didn't let Marley feel how bad her head hurt. He's always watching over my little girl.
We literally watched the veins disappear on her chest and her head shrink. The next task would be extubating her and I was worried since her trach was so recently reversed. Marley struggled for a while and required oxygen and breathing treatments, but she did it! She stayed off the vent and got to come home April 25! Oh and she came home on no heart medications, well except aspirin. Marley is healed.
She is home and doing great! She's developing great and is always a happy smiling baby. She's been through so much and I'm so thankful for every one's prayers, kind words, and encouragements. Marley has touched many people's lives. I've had so many people some I've never even met before reach out and tell me how she's brought their faith back. A tiny baby that never should have made it has one heck of a testimony to share with the world.
I've been told by many people that I'm an inspiration to them, I'm a wonderful Mom, and they don't know how I do it. Honestly I don't know how I did it, besides my faith, family, friends, and the love I have for my daughter. I knew I had to be strong for Marley. In situations like these you pray for the best and you prepare yourself for the worst. At Marley's sickest I thought how can I ever live if I lose Marley? And I realized I wouldn't because if Marley passed away my heart would go with her. So right then I claimed in God's name Marley was healed. Whatever came against her she would win the battle and she has. There have been days that I have wanted to shout enough is enough, but I look at Marley and she always has a big smile on her face and I know we'll be okay. I've found that what doesn't kill us makes us stronger and God really does have a plan for us all. So thank you for everyone who has told me I am an inspiration, but the truth is I'm just the Mommy to the most precious and miraculous little baby ever. I'm nothing special, but Marley is.

Thank you to all the PICU staff for again saving my daughter's life.

My how time flies when you are discharged from the PICU!

2010-01-19T20:18:00.001-08:00

Sorry for not updating this sooner, we have been a little busy. This is going to be a long update!

Starting where I left off. Marley did recover very well with minimal complications from her heart surgery. She did not have an internal pacemaker placed, and her right leg still is smaller then her left, but it's getting stronger every day. Marley's chest was closed with no problems, even though it scared me too death. It's a surgery done in her picu room! Of course we only have the most qualified and best surgeons around working on Miss Marley Moo.

Though we did not have many complications with her heart, Marley failed several times being extubated. The picu doctors (we love you guys!) did everything they could think of to try and prevent Marley from receiving a trach, but in early December that was our only choice. Marley has a HUGE pulmonary artery obstructing her left bronchus. The argument between our doctors, or should I say conversations between our doctors was is it congenital will Marley's PA grow with Marley, or is it from her severely high pulmonary hypertension? This is when we received possibly the worst news about Marley, they believed she had primary pulmonary hypertension.

Primary pulmonary hypertension is a devastating disease, and the only cure is a heart/lung transplant. The quality of life and outcome for someone diagnosed with this is very poor. Our heart surgeons were ready to start Marley on medication for her PPH, it would be our last line of defense for Marley. Thankfully by the grace of God, our PICU doctors put their heads together and said "lets run more test, none of this adds up". So the next test was a bronchoscopy.

So, the following Saturday we met Dr. Siemens, and he explained the procedure to us, and what it will show the other doctors. The following Monday Marley had her first (of now many) bronchoscopy done by Dr. Sawyer (Siemens associate). When meeting Dr. Sawyer he explained to me if he sees a need for a trach he will go ahead and place it. Well, I was scared not only for Marley, but myself. I told Brian not to come to this procedure because it was minor, and he could just stay at work. Thankfully Dr. Sawyer came back with Marley and no trach. This is when we found out just what Marley's PA is doing to Marley's airway, and what our next steps would be.

The bronchoscopy answered a few questions, but not enough to rule out PPH. So, with the on going conversation between our doctors, the next test would be a CT angiogram which showed a huge PA. With diagnosis of PPh looking more correct then ever, my heart was breaking for my sweet baby. But of course our PICU doctors along with Dr. Kimberling had one more trick up their sleeves, another heart cath along with a special order from Dr. Barton to hold her hypertension medicine.

Marley was not given her pulmonary hypertension medication for two doses before her heart cath, and I was told not to expect a miracle. This was just to hammer out the facts, and hopefully we would have an answer. The night before her heart cath I cried and begged God not to let this be true. She had been through so much already please don't let it have been for nothing. My heart ached. I had a calm come over me, and I knew no matter what we would all be okay.

The morning of the heart cath was an odd one, Marley had so many procedures lately that few of our family members could be there. So it was just me, my best friend Sheri, my Mom, Momaw, Grandbud, and of course Brother Kelvin. We prayed over our sweet baby, and our PICU nurse along with the surgery team took Marley back for her heart cath. The longest hour of my life came and went, and they were already bringing Marley back. She looked great, and in walked Dr. Kimberling who told me the greatest news I have ever heard," Marley has NO pulmonary hypertension, her levels are not borderline normal, they are on the low side of normal". Dr. Kimerberling then high-fived me, and said "Now we have to figure out our next step".

After getting a second opinion from St. Louis Children's Hospital our next step ended up being a trach with a cpap to stint Marley's bronchus open. So again, we walked Marley down the surgery hall on December 11, and she received her trach. We were told to expect her to be on her CPAP for possibly 18 months. We received all kinds of new education from the greatest respiratory therapist, nurses, and doctors, and learned how to care for Marley.

Less then a week after Marley's trach surgery, Marley was allowed to be held. My heart melted to hold my baby again, still brings tears to my eyes it was amazing. The next day Marley was allowed to be on humidified air while we held her, and the day after that Marley got to try to eat by mouth again. We were scared because a lot of children develop a food aversion, and will never eat by mouth again. But in true Marley fashion, she had no problem eating, and amazed us again!

The next day I was told more good news it was time to plan Marley's discharge. I couldn't believe it, after spending over 9 weeks in the PICU, Marley would be home for her first Christmas! We were discharged December 22, 2009, just in time for Oklahoma's first blizzard ha! Marley got to spend her first Christmas home, and even though we can't have many people around her she had her immediate family there and boy was she spoiled!

Since being discharged Marley is only on her CPAP at night and the ENT is hopeful we will have her trach out before she is one! Marley is now eating cereal, stage one baby foods, and recently started using her speaking valve.So we had another mile stone, we got to hear Marley cry for the first time since November. She weighs 12 lbs 3 oz and is 24 inches long, that is quite a bit since she was discharged weighing 9 lbs 5 oz. Marley is now holding her head up on her own, reaching for her toys purposefully, and making all kinds of silly faces. She is tracking every thing and everybody, if she hears your voice she will track you down too! She is so smart, beautiful, and perfect. I am lucky she is my daughter.

Marley has beaten many odds and I am so proud of her. I want to thank all the PICU staff at St. Francis you guys saved Marley's life. Without you Marley would have been lost. Thank you so much for never giving up on her, and always being there to answer our questions and give us a reassuring smile. Thank you for loving Marley and always taking such great care of her. We miss you guys! Hopefully our next visits will be good ones.

I will try to keep this updated better, I am a terrible blogger!
I thought I should share my goal for Marley.....I want Marley to be able to blow her candle out for her first birthday. That means the trach, oxygen, and vent will all be gone! So that's what we are working towards now. We are going to have the biggest celebration ever and everyone is invited!

Luke 8:48 And he said unto her, Daughter, be of good comfort: thy faith hath made thee whole.

Open Heart Surgery

2009-11-13T14:59:00.000-08:00

Well, I promised I would update this like a week ago, but we have been a little busy. The CT scan on Friday was postponed, instead she had an XRAY with contrast on Monday. The contrast was the first thing Marley has gotten to have by mouth since her gtube placement, and she loved drinking a half ounce of chalk with a splash of formula! The XRAY showed Marley had a vein obstructing her bronchus, which was collapsing her left lung. Open heart surgery was the doctor's solution to correct it, the next question was when? So, on Tuesday night at 6:00 p.m. Dr. Barth came in to tell us Marley's surgery would be the next day at noon.

Dr. Barth told us the outcome of Marley having surgery right now looked very poor, and the risk of Marley not making it was very high. I have mentioned before Marley has very high pulmonary hypertension, but I have never mentioned how high. Marley's lungs receive a 7:1 blood flow compared to most people who get 1:1, which means Marley's lungs get seven times the amount of blood rushing through them than the rest of her body. This is one of the reasons it is so difficult to intubate Marley and to operate because the risk of pulmonary crisis is so high, it is almost inevitable. Dr. Barth mentioned her other risks such as not being able to come off the bypass machine, not being able to be on the bypass machine, infection, and several other terrible outcomes. So after listening to Dr. Barth tell me all the ways my baby could die, she explained they do not think Marley will have a good outcome from this surgery, and did not want to paint a false rosey picture for us, but she must have the surgery to repair her lungs.

The day of her surgery Brian and I were nervous wrecks, along with our parents, siblings, grandparents, cousins, aunts, and friends that were there with us. But, for some reason we both felt better about this surgery than we had about any of her other ones, we had a peace about it. Brother Kelvin led us in prayer for Marley, and together we agreed with God that our Marley Moo would be fine. Marley smiled and played all morning and was in such a good mood. The surgery nurses came to get Marley at about 12:30 and we all followed Marley to the surgery area. Brian and I kissed her one more time and told her to be strong, and we would be waiting on her. Marley of course had her doll with her that has accompanied her to all her surgeries.

At about 1:45 the surgery nurse called to let us know they had put all of Marley's IV lines in, and they were about to put her on bypass. She then called again in about thirty minutes to let us know Marley was doing well and on bypass. Well, about five minutes later our nurse from the PICU (his name is David), came in to tell us Marley had a vein that they were not counting on being where it was, and they had to take her off the bypass machine. He then told us Marley is now being cooled down to 22 degrees Celsius, and they are stopping her heart, she is considered in circulatory arrest. Once they moved the vein they could warm her back up and put her back on bypass. He warned us that Marley would come back very sick, if she came back at all. We were all very upset, and Brother Kelvin again led us in prayer for our Marley.

We waited and waited to find out more news, and they called about an hour later to let us know they got Marley back on bypass, but didn't know if she would come off easily or at all. Well about another hour later they said Marley's surgey was almost finished and the doctors would be coming to talk to us. We waited for Marley in the hallway. We could see her before they took her back to the picu. When the doctors finally came down the hallway with Marley they all had shocked looks on their faces, and only her heart surgeon was smiling. It scared us so much.

We got to look at Marley for about ten seconds while they were pushing her through the hall and she looked so pink we could not believe it. We met her heart surgeons in the waiting room, and they explained that Marley was in circulatory arrest for 51 minutes, and they had to basically reroute a lot of veins and divide and re-plumb one of them. They then went on to say, some how this baby came off the bypass with no problems. We all laughed and said, "some how, huh"? Our surgeons are Christians and give all the glory to God, and they told us before the surgery they depend on him to guide their hands. Well, they had to depend on him a lot during Marley's surgery.

Marley is now recovering very well, and surprising all her doctors. The doctors all come in with smiles on their faces, so proud that Marley is doing so well. One doctor even said, "this is the pinkest baby I have ever seen"! Marley still has a long road to recovery in front of her. Her chest is still open, she has an external pacemaker to keep her heart rate up, and her right leg has weaker pulses than her left. So please pray for Marley's recovery, that she does not have to get an internal pacemaker, her chest is closed easily, and her leg makes a full recovery too!

I have said it many times, but Marley is a miracle and God has big plans for this baby. She is here for a reason and we believe she is going to do great things. She is the strongest person I have ever met, and I am so proud that she is my daughter. God is the ultimate healer and I believe he has his arms wrapped around Marley.

Ct scan and a collapsed lung.

2009-11-07T07:09:00.000-08:00

Marley still is battling her collapsed lung, but she extubated like a pro! Dr. Lindmark came in yesterday to tell us her lung is still completely whited out on her xrays and that indicates her lung is still collapsed. Our next step is a CT scan to prove it's her heart causing her lung problems and not anything else. The doctors believe Marley's heart is so big that when she is on her back it's causing her airway to her left lung to be closed off. The only thing that can fix this is moving her open heart surgery up to possibly this week.

Marley is on her belly most of the day, this allows her heart to fall forward and not put pressure on her lung and allows her to breathe easier. But, it also causes discomfort to Marley since she just had the gtube placed in her belly, and a central line placed in her trunk area. Even with all this going on Marley still keeps a smile on her face, possibly because she has never known anything different. Marley has never known anything but being sick.

I do not know if I mentioned in my last blog, but intubating Marley is very dangerous, in fact life threatening because of her pulmonary hypertension. So we decided to have Marley dedicated before her last heart cath. So in room 115 in front of her family, some nursing staff, and doctors, Brother Kelvin dedicated our sweet angel back to God. We really wanted Marley to be dedicated with her cousin Xeplyn, but we felt time may not be on our side so we decided last Tuesday was a perfect day for her dedication. Marley came through the heart cath like a pro, God is truly wrapping his arms around our sweet Angel.

We are agreeing with God that our Marley is here for a reason, and will live a long and healthy life. We just have to get past these few obstacles, but God will not give us something we cannot handle. We can do all things through Christ. I won't lie some days are harder than others, and I question why this is happening to my sweet baby and my family. Then I look at my sweet Marley and know she was chosen for me. She may have not been born with an anatomically correct heart, but it the most beautiful, pure, and perfect heart I have ever seen. She is our gift and I am so thankful she is my daughter.

I will update everyone about the CT scan on Monday and what our next step will be. Keep us in your prayers. Pray for Marley's strength and healing. Pray for strength and understanding for me and Brian.

For you created my inmost being; you knit me together in my mother's womb. (NIV) Psalms 139: 13

A tube for food!

2009-11-03T16:47:00.000-08:00

WARNING: I am not an editor like my sister who wrote the previous blog, so don't judge my grammar. I am a nurse and we chart in sentence fragments :) so sometimes it's hard to adjust from that.

Marley's update! Well, last Tuesday we had a heart cath to see what was causing all the problems Marley was having. The cardiologist and the PICU doctor decided Marley was aspirating her food into her lungs and she would need a g tube (mickey button for those who are familiar with feeding tubes). The g tube is a tube that is in her tummy that will allow us to directly feed her into her stomach instead of by mouth. She will still be able to eat by mouth just not right now. She had an esophageal wrap too which will prevent Marley from aspirating. The heart cath also showed Marley moo (that is her nickname) has extremely high pulmonary hypertension that is life threatening. So we hoped the g tube would give her lungs time to heal and give her heart a break.

The decision to do the surgery was a difficult one for me and Brian, we were worried this was an unnecessary surgery and the doctors were missing something. But our families both said if we don't do it then we will feel terrible if something happened and we could have done one more thing to help Marley. Since the g tube was placed last Wednesday Marley has remained on the ventilator, developed pneumonia in both lungs, and her left lung has collapsed. They are now placing Marley on her belly for twelve hours a day hoping it will allow her heart to fall forward and take the pressure off her lung. Finally after a few days of doing this Marley's lung has shown some signs of improvement. Praise God! So the doctors are hoping Marley can be extubated tomorrow. It has been a very up hill battle for my sweet girl, but she is such a fighter.

Marley has a lot of people praying for her and we are so thankful for all the prayers and thoughts for our sweet family. Brian and I are also very thankful for the support from our families and friends, we would not be able to make it through all of this without you guys. Please keep us in your thoughts and prayers and be thinking of Marley Moo tomorrow when they extubate her. They really do not want to have to reintubate her with her pulmonary hypertension because this could cause her to go into a crisis situation and possibly lose her life.

Marley is the toughest girl I know, and I am so thankful she is my daughter. I have never met someone who has wanted to live so much. I don't know if she is doing this because she knows how much I need her, or if she is fighting so hard because she needs me. But either way I am thankful for her fighting spirit. My Marley is a miracle baby. We still have a couple surgeries after this so we will keep you updated. Her next surgery is a big one it's her open heart surgery for her TAPVR if her lungs heal correctly. Pray for Marley and strength for us. Thank you guys!

My sister Whitney sent me this poem, it really speaks a heart mom's heart.

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will she need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns her wings,
I run to my child's bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she's here,
but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will she be alright?", to watching her reach out her hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to her beautiful heart).
God must have known how much I'd love her (Just as He loved her from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

Marley needs your prayers!

2009-10-24T19:05:00.000-07:00

Marley Brooklynn Fortner is a miracle baby. A complication called a placental abruption during her mother's pregnancy required an emergency C-section that made Marley's birthday June 20, 2009—a month earlier than planned—at St. John Medical Center in Tulsa. Marley had to be resuscitated, and the doctor told her family the next day that he had thought he would lose Marley and her 23-year-old mother, Kendyl.

Marley's first two hours were rough. A ventilator had to breathe for her, and doctors and nurses injected her with dopamine to stabilize her blood pressure, fentanyl (an opiate more potent than morphine) for pain and nitric oxide to lower her pulmonary hypertension. Within two days, doctors told Kendyl and Brian, her father, that their baby's pulmonary veins had formed incorrectly; they are connected to the wrong side of her heart. The condition is called Total Anomalous Pulmonary Venous Return (TAPVR). Open-heart surgery would be necessary because TAPVR causes a lack of oxygen, evidenced by the blue color surrounding Marley's mouth and eyes.

After learning that St. John could do nothing more for Marley, her parents opted for her emergency transfer to Saint Francis Hospital's Eastern Oklahoma Perinatal Center (EOPC)—the region's best newborn intensive care unit. Kendyl could not be discharged from St. John so soon after her own trauma, so Brian left his wife and followed Marley's ambulance to Saint Francis. Neonatologists performed several echocardiograms and other tests during the next few days. They discovered two holes in Marley's heart, and she would need surgery for those, too. Kendyl and Brian learned about oxygen, pulse oximeters to measure oxygen saturation in Marley's blood, CPR and what to do in an emergency. At 17 days old, Marley went home in "stable" condition.

Six days later, her blood oxygen levels got too low. This time, she was admitted to the Children's Hospital at Saint Francis. An electroencephalogram (EEG) that measured Marley's electrical activity in her brain came back negative for seizures; so did a pH probe for reflux, which sent a tube down her nose and into her esophagus. The next option was Marley's first surgery: a heart catheterization. It detected a heart defect no one had suspected: an extreme coarctation of the aorta, and the doctors did not know how Marley was alive.

Forty-eight hours later, Marley underwent a second heart surgery. A nurse came into the waiting room to say the procedure was almost complete. And then he came back. The surgery didn't go well, he said, and Marley didn't have much time. The surgeon's attempt to widen her aorta artery by cutting out the narrow part and stretching the wider parts together for reconnection failed. But the surgeon would do something that was common in the 1980s: He would remove the brachial artery from her left arm to patch her aorta. It was successful, but it leaves Marley with a weaker, possibly shorter left arm. In addition, the heart cath had damaged an artery in her right leg, and it leaves Marley with a shorter, weaker right leg, too. Despite it all, again Marley went home in "stable" condition.

She was home for about a month when she became unresponsive in her grandmother's arms. An ambulance took her to Saint Francis again, where she is currently in the pediatric intensive care unit. Her cardiologists suspect a virus has pushed her into heart failure, and now she is too sick to undergo heart surgery to correct her TAPVR.
Please keep 4-month old Marley and her family in your prayers