Reliving ECMO and a Positive Update

I am admittedly a fan of Grey's Anatomy and Private Practice...I have watched both shows since they began and even though I usually end up in tears at some point of each episode, I can't seem to stop being a viewer. The past two weeks both shows have portrayed a baby put on ECMO. Now if I had seen these episodes before June 2011 I would fortunately have no idea what ECMO actually was. But the fact is that my strong, beautiful daughter had to be put on ECMO in order to save her life and these episodes had me reliving the days spent in her hospital room as we prayed for a miracle. 

ECMO stands for extracoporeal membranous oxygenation and it is a last ditch effort in order to prolong a patient's life by using a form of heart and lung bypass...basically it is a machine that does the work of the heart and the lungs by taking all of the blood out of the body, oxygenating the blood, and then circulating it back into the body. In my opinion it is a miraculous form of hell - it saved Stella's life but it was some of the darkest days any of us have ever seen. 

This is the real face of ECMO. It is not a simple procedure like these shows portrayed...it is a long, emergent surgery. So emergent that Stella could not be taken to a regular OR instead her ICU room was transformed into the operating room and the entire ICU hall that she was in was shut down (no parents/visitors could leave the rooms if they were in the room when the procedure started and no parents could go back to their baby's room while the looong procedure was happening.) The typical protocol at the CVICU is to have 2 patients to 1 nurse but while Stella was on ECMO she had 2 nurses to just herself...one that had to be sitting in the room to monitor her EVERY MINUTE. The machines that she was hooked up to overtook the room and there was barely enough space for the nurse that was required to stay in there, let alone her parents and our many family members/supporters. 

Many babies who are put on ECMO stay on the bypass machine for up to a week (it is only a very short term solution and can not be used much longer than 7 days) and too many babies who had to be put on ECMO don't survive. We were very lucky that Stella was only on ECMO for 24 hours and that she was able to gain enough strength to have her 2nd open heart surgery. We knew that the odds were against us and the doctors made it clear that Stella's chance of surviving her 2nd open heart surgery in her condition was very small. We spent the two days of back to back procedures (ECMO and open heart) praying for God to give Stella a miracle or to take us instead. (The most realistic portrayal in Private Practice was a slight glimmer of the emotional toll it took on the parents when the mom was praying that she would gladly give her life for her baby to live.)

Thankfully the days of ECMO and open heart surgeries are behind us; although the days we spent in her CVICU room still feel like they just happened. Today Stella had two wonderful check-ups and we were able to breathe a sigh of relief as we talked to her doctors about her progress.

Stella saw her neurologist, Dr Sweetman first, and she was very pleased with Stella's progress developmentally. Stella was in a great mood and she waved "hi" to Dr Sweetman and was very talkative during her visit. Stella has not had any more seizures and she is making progress in all areas so we do not have to go back to her neurologist for 4 months.

Stella then had an echo and a cardiology visit. Her echo was GREAT! Her gradient was between a 2 and 3 in all areas (normal is close to zero and this number has previously been as high as an 8) and her pressures were at 20 (normal is anything less than 30!) Her cardiologist was very happy with all of her results and he even cleared us to travel to South Africa to visit Stella's Uncle Scott, Aunt Amber and cousins (hopefully we'll go in July).  We'll see the cardiologist again for echos and check-ups in March and June but as long as everything remains stable Stella is allowed to travel. 

I watched the most recent Private Practice episode tonight and even though both shows "sugar-coated" ECMO, they also reminded me how much of a blessing Stella's life is. We have a lot to be thankful for in regards to how Stella is developing and her overall health...she has surpassed all of her doctors' expectations of a patient labeled as an "ECMO baby" and I am so glad to have the chance to watch her as she continues to reach milestones and exceed expectations.

One Year Later and Another Echo

A year ago today I took this smiley girl to her cardiologist for a "routine" echocardiogram. We had been to many echo appointments before and many since but at this appointment we were immediately admitted to Phoenix Children's Hospital because the echo showed that Stella had stenosis in her pulmonary veins and she was going into right heart failure. We had plans to leave a few days after her "routine" appointment to travel to Coronado Island to enjoy a vacation with my family, we had no idea that we would not be coming home from the hospital for over 2 months and we were about to encounter the worst medical roller coaster ever. It is a miracle that Stella was able to come home with us and it is by the grace of God that she is continuing to do so well since we have been home. The odds were against us when we had to make the decision to put Stella on the ECMO machine and to endure a second open heart surgery. The odds were even against us as we took our daughter home because her chances of having pulmonary vein stenosis again were very high.

The echos that we have had since we were discharged from the hospital have continued to get better each time and we have no reason to think that her upcoming echo should not be even better than her last one in March. However, it is a little unnerving that her echo this Thursday is almost exactly one year from the echo that admitted us and I pray that there are no surprises. Once we get the great results from her echo on Thursday we will be leaving on July 1st to enjoy the Coronado vacation with my family that we missed out on last year.

1 in 100

This is what Congenital Heart Defect (CHD) looks like to me:

This week (Feb 7-Feb 14) is CHD Awareness Week. According to the Children's Heart Foundation, 1 in 100 babies are born with some type of CHD...this is about 40,000 babies a year. This year about 4,000 babies will not live to see their first birthday because of a Congenital Heart Defect. 

Stella is my 1 in 100 and there were many days that I prayed for just one more day. We are getting very close to celebrating her 1st birthday (a day that at many points I wasn't sure we would see) and I am so thankful to have the chance to celebrate this milestone with Stella when too many CHD babies do not get the chance. 

Before Stella was born I knew very little about CHD and the things that are now my reality. I did not know what an echocardiogram was or how to use a pulse oximeter, or read a hospital monitor. I had never seen a feeding pump and never imagined having to put in a feeding tube. I never made the choice to become a nurse or have any profession in the medical field, but now the CVICU at Phoenix Children's feels like a second home. My family, along with 1.8 million US families was affected by a Congenital Heart Defect and now my world is filled with doctors visits, echos, therapies, feeding tubes, beeping machines, medical terms and prescription meds. CHD is something that has taken over my world and is very important to me. I am a heart mother and the sleepless nights are worth it because the beautiful girl with the scar on her chest and the smile on her face has changed my world for the better.

I am a Heart Mother

by Stephanie Husted

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'm really not that strong.. 
It seemed my heart was breaking..
As, I'd loved her for so long. 
I will not give up on this child.. 
despite your best "advice".. 
I will give my child a chance.. 
No matter what the price.. 
And I will learn all that I need.. 
to help my child to thrive... 
I'll even use that feeding tube.. 
My child will survive! 
And she'll needs lots of therapy? 
And she just can't gain weight? 
Alright God I can do this.. 
I will not curse our fate. 
The feeding pump beeps,( at 3:00 a.m.) 
It serves as my reminder.. 
How many parents would welcome that sound? 
Tomorrow Lord, I will be kinder.
Another angel earns their wings.. 
and I run to my sleeping child's bed.. 
I watch her then, for quite awhile.. 
(I bend down and kiss her head) 
Then I cry for the parent's whose lives have been broken..
And 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 whispers,"Please let her stay". 
From pacing the surgical waiting room... 
to sitting by her hospital 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 same scar I trace with my finger.. 
(It's the door to her beautiful heart) 
You must have known how much I'd love her.. 
(Just as You loved her right from the start) 
A heart mom is always a heart mom.. 
(wise beyond all of her years) 
And for those who have angels in heaven.. 
Our hearts share in all of your tears.. 
On Mother's Day I will remember.. 
You chose me for her(and no other) 
And I will embrace that beautiful day.. 
When I became a "heart mother".

A Happy Heart

Stella had a routine echo appointment today. Echos still freak me out mostly because at the "routine" echo in June I decided I could handle taking her by myself and we were admitted from the echo appointment to PCH. I am not sure if I will ever decide to go to an echo appointment without someone by my side (today my mom came with us and Stella really appreciated it because YaYa provides her with lots of entertainment!) Let me start this post out by saying that the end result of today was actually pretty good overall, but I wasn't so sure of this throughout the day.

Although her past few echos have looked pretty good and they have continued to trend in the right direction, I still find myself holding my breath while we're in the room and the technician is doing their job. Today I started out calm but quickly became a silent nervous wreck-we have been through enough echos to know the "normal" routine of a 20-40 minute ultrasound followed by transferring us to a room to wait and talk to our favorite Nurse Practitioner, Laura. Today after about 20 minutes the echo tech told us that he needed to show the doctors something and to stay put, he would be right back. However, as a nervous mom I heard SOMETHING'S WRONG. A few minutes later he came back in and said he needed to redo a section to get a better picture. Once he got his picture he once again left the room to show the doctor and left us waiting. When he returned he was accompanied by another echo technician and one of our cardiologists...now I am thinking SOMETHING IS REALLY WRONG! I was quickly told that I didn't need to freak out and they just wanted to try to get a good look at the right pulmonary veins that were baffled in her first surgery (the ones that they have had a hard time seeing the past 2 echos). With the cardiologists guidance they were able to see the veins and were pleasantly surprised that the blood flow looked better than they had expected and they did not see any turbulence or other signs of stenosis (I breathe a sigh of relief about now). 

So the summary of her echo today was that her gradiance was a little higher (it was previously a 4 but today it measured at a 7 but they aren't too concerned about this), they did not see any turbulence, and everything else stayed the same. They still want to keep a close watch on her right side so we have another echo in 6 weeks and at some point this year she will probably have a cardiac cath just to get an even better look.

Overall, Stella has a happy heart and she weighed in today at a healthy 16 lbs 10.4 ounces and was slightly over 28 inches long.

Stella's Whole-Hearted Story

I know that many of you have been following Stella’s story for awhile but I wanted to share what we have been through for those who are just joining us on our journey and share some pictures of Stella along the way that haven’t been shared yet. Be forewarned…it’s very long because Stella has been through a lot her first few months of life and knowing her background story is important to understanding where we are today.

Stella Grace Sridharan was born on April 5, 2011 at 12:30 am and we were so excited to welcome our beautiful baby girl.

After only pushing for 5 minutes Stella graced us with her presence, but she didn’t score great on her APGAR test and she required oxygen right away. The oxygen helped and we got to hold our baby knowing that she was perfect and thinking that she was healthy. The next night we sent her to the nursery to try to get a couple hours of sleep…an hour later we were woken by the nurse saying she had started to turn blue and they think she aspirated. We waited for what felt like hours to hear some more news and finally be able to go see our baby.The nurses thought she had aspirated and they decided to run tests to find out what was happening. She had an echocardiogram (a heart ultrasound) and we were lead to believe that it was not a heart issue and that she aspirated and we would be able to go home the next day. Another echo tech was sent over from St. Joe’s hospital to “make sure” that it wasn’t a heart condition. We had completely dismissed a heart defect and at 7 pm the phone in the hospital rang and a cardiologist from St Joe’s told me that my baby had a congenital heart defect and would need heart surgery very soon, that we would be transferred to St. Joe’s that night. Stella and I were taken by ambulance to the NICU at St. Joe’s so the surgeons and cardiologists could create a plan and she could get a little stronger, we found out that she had TAPVR (total anomalous pulmonary venous return). 

 

 The surgeons met with us and explained that her pulmonary veins were not taking blood to the right places and that the success rate of the repair surgery was about 98%, meaning most of the time the patients have the surgery and the “plumbing” gets fixed. When Stella was 1 week old she went into open heart surgery to repair her veins. She did great during surgery and we had a waiting room full of family and friends celebrating with us as the surgeon shared how well the surgery went. Stella had a relatively quick recovery and we rejoiced daily as we had no major setbacks, and 10 days post-surgery on Good Friday (what we now call Great Friday!) we finally got to take our baby home!
                                                   

 After the initial open-heart surgery to repair the TAPVR that she was born with we thought we were in the clear and we could finally fully enjoy the somewhat normalcy of parenthood. We were doing our best to treat Stella like we would if none of this had happened (minus the heart monitor that we had to carry around, the extra doctor appointments, and the dreaded feeding tube and “Kangaroo Joey” pump.) During an echo/cardiology follow-up appointment on June 20 we were readmitted to Phoenix Children’s Hospital because they found a narrowing in her veins that were repaired and it was causing the right side of her heart to be enlarged (unfortunately meaning Stella was in the 2% of unsuccessful TAPVR repairs). We were actually told that the right side of her heart “looked like a mess” – that can’t be a good thing!

We brought Stella in as a smiley 2 ½ month girl and watched as she struggled more and more each day to do the simple task of breathing and giving her body the oxygen that is necessary. On June 27^th we received a call at 3:30 am to come to the hospital immediately because they were having to intubate Stella (to put her on a breathing machine). The doctors decided that surgery needed to happen ASAP and she was scheduled for 7:30 am the following morning. They took some routine blood cultures for testing prior to surgery and it looked like everything was good; however, the blood cultures showed that she had a blood infection from her central line and the surgery got postponed. That Tuesday was the day that we hit rock bottom. Stella was on the ventilator and they started her on antibiotics trying to keep her stable and fight the infection before operating. We watched as she went into heart failure and at the worst moment of our lives David and I were taken into a room with four doctors to talk about our options. The option that they gave us was to put her on ecmo (a form of heart and lung bypass that involves two very large tubes in her neck, one going into her superior vena cava and one coming out of her carotid artery-the tubes took all of her blood out of her body into the ecmo machine which oxygenated the blood and pumped it thru her body) and get her stable so they can do the surgery. But the surgeon said that the infection and heart failure really complicated things with the surgery and her chances of making it through were minimal (1-2%) and that he could not guarantee that if he operated this time and stenosis continued to form in the future that he would be able to operate again. He made it clear that stenosis could form weeks after the surgery, months after, or years after and if it did reform there probably would not be much that they could do. The other “option” which in all honestly was not even an option at all, was to make her comfortable the way she was and let her survive as long as she could without providing support-which in her condition would not have been long. We obviously chose to give her the best chance we could and pray for miracles. I can’t even begin to explain how it feels when someone is telling you that your child might not survive but I do not wish that feeling on anybody!

Being on ECMO helped Stella to be “stable” enough for surgery so the next morning we walked her to the OR. After Stella’s second open heart surgery we were told by our cardiologist that the surgical team did a “miraculous job”- and we knew that a miracle had definitely happened in that operating room.

 She came back from surgery completely off of bypass and only on a ventilator. We were in the hospital for almost 2 months after surgery (and we were unable to hold Stella for almost an entire month),

Holding Stella for the first time after 23 days

 this time in the hospital we had many setbacks including kidney failure and dialysis for 13 days, failed extubation followed by another surgery for a left diaphragm plication, and discovering that when she went into heart failure she at some point had a stroke that caused most of the left side of her brain to be damaged. Despite all of the bumps in the road we got to go home again on August 13 with our strong little girl – this time we went home with a pulse oximeter, oxygen, the NG tube and feeding pump and many meds that were distributed every 2 hours.

Stella makes progress daily and she is off of oxygen, the pulse ox is gone and she is only on 4 medications. She is still unable to eat by mouth and we decided to have her go thru another surgery to get the Gtube placed in her stomach in the hopes that she will make more progress overcoming her oral aversion. We see speech, physical, and occupational therapist weekly to help her gain strength in her right side (which is weaker due to the brain damage) and to help introduce different textures and objects to her mouth. We regularly see a neurologist, gastroenterologist, and cardiologist. Her heart has been doing well and every month when she gets an echo we are told that it continues to get better and closer to “normal.” Stella will need regular visits to the cardiologist for life because her pulmonary veins are at a high risk to have restenosis, but we have been told that if she makes it to her first birthday without having any heart/vein concerns that her risk of having restenosis again goes down greatly. You better believe that her first birthday party is going to be a HUGE celebration, Save the Date-on April 6, 2012 (Great Friday) we will be celebrating.