Category Archives: News

Transplant Surgery Updates

Below are the updates we received during the night as our baby slept on the operating table. I apologize for not posting them here earlier but the blog is not a very effective tool for real time information.

9:30PM – Maddie is on bypass and the heart is in the room.

10:30 – The heart is in and beating. Please send a prayer of thanks, healing, and strength on behalf of the donor family.

11:07PM – The transplant is complete. That sweet, miraculous heart is beating strong in our precious baby girl. The doctors are pleased with what they see. They have some additional monitoring and wrap up to do before we can see her but our spirits are lifted knowing that the surgery is over. We are so incredibly grateful. Your prayers, every single one, carried us through these long horrible hours. It is only by the constant companionship of the spirit of God that we could pass through this trial. And it is only through His guiding hand that we will go forward still. Thank you all for your unending support. More updates to come.

Transplant Has Started

PHOTO CREDIT: Tami Cutler PhotographyPHOTO CREDIT: Tami Cutler Photography

The Cardiac Team called from the Operating Room. The transplant surgery has begun. Her complicated anatomy will make this already detailed procedure especially labor-intensive and difficult. We expect it to last as long as 6 hours, probably more.

We are breathing. In and out. It’s one moment at at time now. Our prayers are heard. We know that.

Again, thank you all for your support. Your faith strengthens ours.

Waiting for Transplant

Watching the rain

We’ve been waiting all day long. I feel like I’m going to burst. The anxiety is like a solid ball lodged in the base of my throat. This unknown is unbearable.

They just took Maddie to the operating room. Everything on our end looks good so far but we still don’t know for sure if this transplant will happen today or not. Anesthesiology is getting her prepped for surgery. We should know within the hour if we are moving forward.

Maddie was scared, still fighting off the sedative as we kissed her goodbye at the OR doors. She never, ever gives up. It’s this strength that we look to as we step into this darkness.

But we know we are not alone. Thank you, every single one of you, who have expressed love and support. Your prayers are tangible. They are lifting us up.

Please, please also remember the grace and goodness of the donor’s family at this time. They need our prayers. Our chance at life is at the mercy of their tragedy.

I will post more as soon as we know.

Transplant

We just got off the phone with Seattle Children’s Hospital. I didn’t even get a chance to let you know that we had listed Maddie for heart transplant just this Tuesday. My hands are shaking as I type. They called to say that they may have a heart for Maddie. We check in at 9AM tomorrow morning (Dec. 26th). I am in complete shock. There will be several hours of testing to determine if it’s viable but Maddie may be in surgery as soon as 2PM tomorrow afternoon. We are so grateful for all of you who have prayed for us before. Please, we are in need of that love and support again. I will post more as soon as we know if the transplant is a go.

Discharged From the Hospital

Bringing home half the hospital!We have our own family Christmas miracle. Maddie came home from the hospital today!

I have so many more things to say but at this moment I am exhausted. Sleep is long overdue.

In the meantime, know that Maddie is doing pretty well. Her energy is up and she is completely off the IV medication (milrinone). We’re looking forward to a relaxing, simple Christmas together at home.

Thank you! Thank you so much, everyone, for your unending support, your love, and your prayers. Every meal, act of service, babysitting hour, thoughtful word, and especially prayer strengthened us. We’re so grateful to be surounded by such good souls and thankful for the wonderful new friends we continue to meet on our journey.

I promise to update further, but for now, please just watch this video. It sums up the joy our family feels for Maddie’s return perfectly.

Sibling Train from Jeannie @ Live. Laugh. Learn on Vimeo.

Heart Failure

WaitingWe returned to the hospital on Sunday. In short, Maddie’s heart is failing.

After being discharged from the hospital last week, spending Thanksgiving with family, and starting a new regimen of heart medication and diuretics, we hoped that she would improve enough without further intervention. Headaches and poor eating by the end of the week led us to contact her cardiologist. Our hopes were dashed when she said we’d need to take her in to the ICU. Another echocardiogram confirmed the devastating truth that her heart function continues to remain poor. In fact, we can assume now that it will never be as good as it was last spring.

So here we are, on the same Cardiac unit where she spent the first few weeks of recovery after her Fontan Surgery, only this time there are so many unknowns.

It’s been a few days now and though I’ve intended to sit down and share this news with you, I just couldn’t. The reality of the situation has been too hard to face.

Here is what we know right now. The IV medication (Milrinone) she’s been receiving continuously has shown marked improvement in her well-being, overall. She is eating, sleeping, and running around (literally, whenever she can, including riding another tricycle, cords and all) better than she has in a long time. This “cardiac tune-up,” as they fondly call it, is making a difference in her pumping function, just as they hoped, allowing her other mechanisms to relax a bit. But these are only clinical improvements. This medication is not a long term solution. It’s only enough to give her cardiac system a break.

The reality is her heart is just tired. Her special little single ventricle heart was never meant to work this hard. It may have accomplished all that it can do at this point. Her cardiac team is beginning to sense that now. We’ve met with the Heart Failure Specialist doctors already. The reality is that Maddie may be facing a heart transplant in the near future.

There are some Plans A and B that we are clinging to before we truly commit to this Plan C.

Plan A: she continues on this milrinone IV drip for the next 5 days, giving her heart more rest, seeing that she is truly improving , before they begin slowly weaning her off to be replaced with strong heart failure meds she can take at home. A three week stay to assure the plan has worked and then we resume our “normal” lives and live it up until we see a decline again. Hopefully not for awhile. This is what we pray for continually.

Plan B: She responds well to the IV milrinone, but not well enough. We spend a bit more time in the ICU and get trained in how to administer the drug at home. She caries it around continuously in a little pouch and we become more intensively involved in her medical care. She would probably be visiting the hospital more frequently, as well. Life, as we knew it would change.

Plan C: she doesn’t respond well to weaning off milrinone or to the new heart failure medication. We’d then begin the long, painful (emotional and possibly physical) process of heart transplant evaluation with no guarantee that it will be successful at any stage of the process.

Reading the cold, hard facts must be shocking and difficult. I apologize. I needed to write it down. Make it official. It’s the only way that I can prepare myself for what is ahead. It’s only fair to be direct so that you know what we’re facing.

Plus, we need your prayers. Oh, how we need your prayers of healing, but more importantly, of comfort and support. We do not know what will happen.

We started this journey almost 6 years ago with a tiny, fragile baby who had no family. Her prognosis then was foggy at best. Her story was presented to us and we immediately knew in our hearts that she was special, even though our logic told us it was crazy to take a child with such severe problems. We weighed it out in our minds. We fasted and prayed. How could we make this decision?

And then one night I was talking to Julianna, my pseudo-sister.

“How can I take this baby?,” I asked her. “How can I go forward with this when I don’t know what will happen? I don’t know if my heart can heal from that kind of loss. What if she dies? What if she dies right away?”

“Then you just love her. You just love her for as long as you have her,” she said through both of our tears.

And we have. And we will.

There is no doubt in our minds that Maddie was meant to be in our family. That answer to prayer back then continues to be a sweet blessing as we face each challenge. God knew that we’d be here, at this very moment, looking down a very difficult road. He knew we’d be okay then and I feel Him strengthening us each day, reminding us that we will be okay now.

And we will.

Maddie Comes Home Today!

IMAG0876

Maddie has been discharged from the hospital today. She’s completely off oxygen, her liver has returned to normal size, and her energy level is better than it’s been in days.

There is so much more to say but it will have to wait for another post. Just know that we are thrilled with her progress and so grateful that she will be home with us again.

I cannot thank you enough for the support and kindness you’ve shown to us. Your prayers and positive energy made all the difference to Maddie. We are so grateful to be surrounded by so much love.

Maddie is hospitalized

Strong Maddie

When I was a teenager, I’d pour all my angst into my journal. Every crummy thing that transpired was recorded with detail. I had many happy moments and much to celebrate but those times would always get left unwritten because I was too busy enjoying the good. I didn’t mean it to be that way. It just became the best method for me to vent my frustration with life.

It seems that this family blog has met the same fate as my high school journal. I have many wonderful memories of our summer’s activities and autumn doings that I’ve meant to share but have been hard pressed to find a free moment to relay them. Instead, I’m writing today with bad news.

Maddie was hospitalized late Tuesday night. Bringing her into Children’s Hospital with suspicion of pneumonia turned into the discovery that she was experiencing heart failure. Her liver was extremely bloated (4 cm) and her body was under severe stress.

Let me back up. All four kids had been sick with a viral illness for several weeks. Maddie was actually the least affected one. Jake and Joe started antibiotics for sinus infections and Maddie started the same medication just to be on the safe side. Her complex anatomy and recent heart surgery keep us erring on the side of caution. Warren’s asthma was bad enough to visit a specialist who started him on heavier medications. They all completed their course of antibiotics, everyone seemed to be improving, and we moved on with our busy schedules.

It’s been fairly cold here recently. Some days were in the low 30’s. Little feisty Maddie often refused to wear proper gear when going outside. Her bluish lips didn’t seem that out of place as she stood at the school bus stop with minimal coverage.

When the third day passed with a progressively worsening cough, prolonged cyanotic symptoms (blue lips, etc.) even after the blankets were piled on, and decreased energy, we decided to take her back to the doctor. There we were told that her chest x-ray showed some fluid accumulation. It could be a pneumonia. We’d better go to Children’s Hospital’s ER for further testing.

Upon arrival, we learned that her INR level (used to measure the thickness of her blood while on Warfarin) was through the roof. Her normal range is 1 to 2, where she’s been since the Fontan surgery. The lower the number, the thicker the blood, the higher the number the thinner. Both ends of the spectrum have their problems, especially for Maddie’s circulatory system. That night she was at a 12. My jaw hit the floor.

Meanwhile, we’d watched her oxygen saturation levels lower on the monitor. They started her on oxygen and tested for bacterial and viral infections. Nothing was showing up and after a few hours of monitoring and a bit of sodium chloride to help her dehydration, they were considering letting us go home. When the ER doctor tried to wean her off the oxygen her vitals stopped looking good. At 2:30AM, she was admitted for closer observation.

Everything took a turn for the worse the next day. The doctors and medical team held “rounds” that morning and were still debating on the symptoms. It didn’t seem like pneumonia, though they continued new antibiotics just in case. An echocardiogram ordered for the afternoon would provide more information about her pulmonary veins, which are always problematic for her, and of course would see what was going on with her special little heart.

The results were like a blow to the head. She was experiencing heart failure. Because her heart muscles were not contracting properly, fluid was backing up causing increased pressure in her Fontan circuit and bloating to her liver. Nobody really had answers for why it was happening. She’s always a challenging cardiac puzzle to piece together.

Did the virus she contracted along with the rest of the kids become too taxing for her heart to handle, making her circulatory system weak? Or was she already experiencing failure slowly over time and we just had no idea?

It’s Friday (technically Saturday since I’ve finally gotten the emotional strength write this down at midnight), and we think that we’ve gotten things figured out as best as possible.

The most likely case is that she was already deteriorating. This virus was just too much for her to handle. The fact that finding her veins during blood draws for INR checks had become increasingly more difficult over the last couple of months may have been a sign we just didn’t recognize. The IV fluids she received probably pushed her over the edge, since pumping extra fluids directly into an already taxed blood stream only causes backup in the system. In other words, it was only a matter of time and we just didn’t know. At least it was sooner rather than later.

But things are looking up. Once they began draining the fluid with our old friend Lasix and starting her on Enalapril for her heart muscle contraction she’s been showing steady improvement.

In order for her to go home she needs to be completely off the oxygen, have little fluid in her lungs and liver, and show stable vitals: good heart rate and respiratory rate. They’re hopeful for the beginning of next week. We’re hopeful that it’s at least before Thanksgiving.

This is a set-back to her overall health but a manageable one once she’s stable. Her echocardiogram today showed improvement in pumping function but also a new issue with leakage in her tricuspid valve. We don’t know how that will resolve yet. At the very least she’ll be taking the Enalapril medication indefinitely.

We are exhausted. It was all so sudden and unexpected. Everyone, especially Warren, Jake, and Joe, have felt the emotional impact of this situation. They miss their sister incredibly. Maddie is holding up but would give anything to go home and be with her brothers. I could barely bring myself to write this story down because it’s so raw and lengthy and unbelievable. But as I was watching “Grey’s Anatomy” to zone out and realized that I understood about 95% of the medical jargon and procedures they were rattling off, I figured I was ready to share.

And I am ready to share. This has been a roller coaster ride with many unknowns but we have already witnessed miracles and felt the strength of endless prayers. You, our dear family and friends, have stepped in once again to provide support and encouragement, meals and babysitting, and so much faith and love.

One day I want to share with you the happy times that we lived this summer as we watch our fighter girl Maddie run and play like she always wanted to do but never had the energy for pre surgery, and post pictures of all the laughing we did as we had adventures and breathed in the summer air. But right now I will share with you our gratitude for our precious girl’s life, for our happy family that has unified under the strain of this trial, and give our unending thanks for the kindness that you continue to show to us.

We appreciate all of your prayers and good thoughts.

Fontan Recovery: Home

Goodbye, Children's!

We are shouting it from the rooftops and the internets: Maddie is coming home today!!!

I wish I could say that she is tube-free but instead I’ll just be grateful that she’ll be eating dinner with us, sleeping in her own bed, and hugging her brothers tonight.

All of your prayers, all of your kind words and deeds, all of your tireless support have led us here. My heart is full to bursting with gratitude.

We love you, dear family and friends. Thank you for standing by us as we struggled through these long 5 weeks.

Welcome home, Maddie Girl!

Fontan Recovery: Tube Replacement

I just feel sick. Maddie is going in to the OR this afternoon to have her left chest tube replaced.

X-ray selfie

The x-ray this morning (Colin and Maddie’s selfie picture above) showed that air and fluid had accumulated again in her left pleural cavity, and at a disturbing rate. Oxygen and medications were not going to be strong enough to solve the problem. The doctors plan to put in smaller tubes to allow the drainage to come out. The tubes will be in for an indefinite amount of time.

Another set-back. This is a hard blow. My heart aches for this little girl who is scared about another procedure. A little girl who is crying because she doesn’t want any more tubes in, she just wants to have zero. A tiny girl who is so hungry but can’t eat or drink until she wakes up from the anesthesia well after 4PM.

At least we were not already home, comfortable and lulled into thinking that all troubles were over when she suddenly became distressed with breathing issues or some other horrible symptom. Being here, stuck longer at the hospital, is exhausting mentally and physically, but we’re still in survival mode. We can maintain it a little longer.

She’ll go in around 2PM. Please pray for her speedy recovery. Let’s get this little girl home soon.