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.

A Girl and Her Tube: The Beginning of a Blended Diet

It has been an exciting week for Stella with some big changes! 

Today she had a neurology appointment and it went really well (we haven't noticed any seizures so her meds seem to be working and her doctor is really pleased with her development.) She weighed 19 lbs and 11 ounces at her appt today (which was an increase since she saw the neurologist last in September, but she has lost 4 ounces since her pediatrician appointment on Oct 5.) On Monday of this week we started our transition to a homemade blended diet for Stella instead of formula and I am hoping that by getting real food she will start to gain weight and stay on her curve.

I have been talking about switching to a blended diet since May/June and have spent quite a bit of time looking into it and talking to people about it. My mother-in-law got us a vitamix blender and it arrived Monday so I finally decided it was time to just go for it!! I will be including a lot of details in this post and upcoming posts about "A Girl and her Tube" to help me keep a record of what we are doing and to help people who are interested in gtube feedings, blended diets, etc to have something to reference. 

Since I began hearing about a blended diet I thought it was the best option to give Stella real food like a normal child instead of having a 1 year old rely solely on formula. I received a lot of information about why blended but was completely overwhelmed with the how. Now it seems easy- just blend whatever a normal child that age would eat and put it through her tube...but many doctors are against blended with tube fed kids because there is so much importance placed on the amount of calories given at each feed and the volume given each day. In order to get the doctors and nutritionists on board we had to have a plan showing that we would be giving a well-balanced diet in which Stella continues to get the amount of calories (or more) each day that she is getting from formula and that it is delivered in the same amount of volume. On top of this there is not one or even two go-to starting recipes that you should follow when you transition to blended. (It makes sense because every child has different dietary needs and/or allergies and one thing will not work for all kids.) All of these factors made it really difficult for me to decide what I thought would be best for Stella and how to go about it.

I finally came to a "conclusion" this past weekend and created a starting point that would be easy enough for us to transition as we learn what is working and what we should differently. We began a few months ago by giving Stella small amounts of various foods through her gtube before starting her formula (doing a single food for a few days to rule out any allergies.) Once we tried all of the foods that I could think of I was at a complete standstill about how to move forward. I have the Homemade Blended Formula  that I got from Marsha Dunn Klein (one of Stella's therapists that we went to see in Tucson about oral aversion) and it has been somewhat helpful. I say somewhat because I had in my head that I needed to read through the whole handbook before I would be prepared to start a blended diet (procrastination/stalling!) and that it would give me a step-by-step route on how to do this. Again, there is not a right way for everyone when it comes to blended...but I am also figuring out that there is not a WRONG way either!

I did a lot of research and found a sample recipe that another family uses for a 2 year old who needs the same amount of calories and fluid volume that Stella needs daily. This sample stood out to me because it wasn't a consistent blend that was the same day after day and included everything in one blend (milk+fruit+veggie+milk+rice all blended together = something disgusting that I would never want to eat) instead this family does a "breakfast" blend with cereal, milk, and fruit, and then a "dinner" blend with protein, veggies, rice and milk. One of the important factors to me was that Stella's blend actually taste good because our ultimate goal is to get her eating by mouth and I don't want to offer her something that would make me vomit. 

My plan of action was to replace half her calories with the breakfast blend for 3 days and give her formula for the other half, then try the dinner blend for 3 days with half formula to make sure that her body tolerates both new types of food. So far we have done 3 days of the breakfast blend (1 cup cereal, 1 cup fruit, 1 cup milk, 2 tbsp oil, and spices) and 1 day of the dinner blend (1/2 cup rice, 1 cup veggies, 2 oz protein, 1 cup milk, 2 tbsp oil, and spices.) SHE IS DOING GREAT WITH BOTH BLENDS SO FAR!! She is still vomiting occasionally but she throws up more on her formula feeds that she is still getting. After 2 more days on half the dinner blend and half the formula we will try to go to a full blended diet where she will get 2 feedings of the breakfast blend in the morning time and 2 feedings of the dinner blend in the afternoon. 

We still have a lot to figure out with the blended diet but I am really glad that we finally made the decision to give Stella real food through her tube. I will continue to blog about the progress she is making, the things that are successful with the blended diet we are doing, and the adjustments that we learn to make along the way and I hope that when someone is at the overwhelming phase of not knowing how to start the process that my trial and error can help them.

These are some of the websites that I found helpful in my quest.

You Start With A Tube (Sacha's sample recipe is the one I adapted for us)

Ainsley Rae blog (this mom has videos that were helpful)

Food For Tubies (Great forum with lots of questions/topics)

You Say Goodbye and I Say Hello

The past two weeks have been filled with family time - family departures, family arrival, and family visits. 

Monday Oct 8th my brother, Scott, his wife, Amber, and their 3 kids Reagan (6), Garrett (5) and Everett (11 months) got on a plane to embark on their journey to move to Pretoria, South Africa.

I am very lucky to consider Scott and Amber not only part of my family but also very good friends. "Nothing makes the earth seem so spacious as to have friends at a distance: they make the latitudes and longitudes." (Henry David Thoreau) The Earth definitely feels a little bigger with them being so many miles away instead of just ten minutes and saying goodbye at the airport was hard and we will miss them a lot but we are excited about this wonderful opportunity they have to share God's love and grow themselves. 2+ years is a long time for us to go without seeing this Thomas family (even with the advanced technology we have with Skype and Google Talk) so we are really hoping that we get the chance to go to South Africa in the next year to visit them. The main thing holding us back is the approval of Stella's doctors that she is healthy enough to visit a 3rd world country (we've received one YES! so far but we have many more to go.) 

A few days after we said goodbye to the Thomas family we got to say hello to David's mom, Cathy, who came to visit for a few days. Stella loved seeing her Nana and spending some quality time doing some fun activities. We really appreciated that she brought some of the cooler Seattle weather with her and we were able to spend time together outside. 

We enjoyed getting together with Stella's Nana and her Aunt Laura for lunch

 We had a great day at the zoo

 Nana took Stella in the petting Zoo area and Stella loved to touch the goats.

We tried San Tan Brewery and Stella showed Nana how she likes to drink water and taste food (she loved to taste their cheese dip for their pretzels)

The weather was even nice enough to enjoy a morning hike at Usery Pass

It was such a blessing to have quality time to spend with each of these family members and to make some new memories since we don't get to see each other every day. Stella's life has definitely taught us to cherish the moments that we have with the people that we love and we are thankful to have these people in our lives - they are a few of the many people that helped us to get through the days we spent at Phoenix Children's Hospital and we are lucky to call them family.

A Day of Celebration

Today was an important day in the Sridharan household for two reasons:

1. Stella Grace Sridharan is 18 months old today

and 

2. David and I celebrated the day that began our family - today was our 5th wedding anniversary.

What a crazy, wonderful, emotional whirlwind the past 5 years have been for us! 

We always wanted to start a family after enjoying about 3-5 years of marriage and we imagined that we would have 2 kids back to back (or close to it.) We would worry about things like what to name our kids if we had boys or girls, what they would be like when they were teenagers, what types of family vacations we would go on...normal things like that. In our wildest dreams we never talked about if we had a special needs child or if we had a child with medical issues - we just assumed that nothing like that would happen to us. It's crazy to think that 1 out of 100 kids are born with a heart defect and there are so many families going through a similar situation to ours; I had never met someone with a child born with a CHD before Stella was born (or at least they weren't talking about it!) Now I would never wish that any child would have the issues that Stella has and if I'm being honest I would have to tell you that I wish that Stella didn't have ANY medical concerns. Having to endure our situation has caused strains on our marriage and on our relationships with everyone around us...but it has also brought us so much closer together. I love Stella so much just the way that she is and I am thankful for everything we have gone through because it has taught us so much about life, love, God, and everything that is truly important. But for Stella's sake I wish she could be "normal" because the road she's traveled and the road she still has ahead of her is not something a child should have to encounter. 

It's hard to believe that Stella is already 18 months old...although we have had some really LONG days the past year and a half; overall it has flown by. She already has such a big personality and I can see her stubbornness shine through (somedays I have to remind myself to be thankful that she is so strong-willed and stubborn because when she was fighting for her life it was those traits that kept her alive!) She has her moments but most of the time she is a very happy, social little girl-her doctors are amazed by her constant smile especially with everything she has been through. Stella has a long way to go to catch up with what a "normal" 18 month old is able to do but she is making a lot of progress and with her strong-willed personality it is evident that not many things are going to hold this little girl back!                                                                          

Bittersweet Goodbyes and a Medical Recap

Stella has been a busy girl lately getting back into the routine of weekly physical, occupational, and speech therapies and spending lots of time with family. We have recently been to both the cardiologist and the neurologist for routine check ups. Her echocardiogram with the cardiologist was great and he continued to describe her tricuspid valve leak as "normal" and the pressure in her pulmonary veins was lower on both sides. Their only concern was her weight (Stella lost almost one pound since they had seen her one month prior.) Her neurology appointment was a follow-up to our recent hospital visit for seizures. We have more than doubled the amount of Keppra that she gets each day and we've added on Topamax and have only seen one seizure episode since these med changes. Her neurologist wants to continue with this routine and see her again next month unless we see any changes before then - but hopefully this amount of medication will keep her seizures under control because we don't want to have to keep increasing her medication. We have also noticed a decrease in her vomiting and it leads us to believe that the vomiting is related to the seizures. At her neurology appointment she had gained 6 ounces in 4 days so hopefully with her throwing up less we can get her back on her growth curve.

In 8 days we have a bittersweet goodbye as my brother, sister-in-law and 3 of Stella's cousins leave for South Africa for 2 years. We are so proud of the brave decision they have made for their family to serve the world in South Africa but we are sad to see them leaving. The past few weeks we have been enjoying as much cousin time as possible. Stella and Everett are only a few months apart and Stella loves to watch her little cousin move and play (he is walking running at 10 months and it is great for her development to interact with him and learn from him.) Reagan and Stella are the only girls on my side of the family and Reagan loves to share all of her favorite girly things with Stella.

\

This morning our church brought Scott, Amber, Reagan, Garrett and Everett up to pray for them as they get ready to make the biggest move of their lives. If you would like to continue to follow their journey and support them in prayer you can find out more here at their website. They have played a big part in our lives especially when we needed support in the hospital on some of Stella's toughest days. It is going to be a long two years not to have them a few miles away where we can get together for play dates or dinner at anytime but I am so thankful for the opportunity to support them while they go through this change in their lives just like they were there for us as our life changed. 

Words I Didn't Expect to Say to Stella...

Sorry it's been awhile since I've posted but in the midst of moving houses, working more hours and David going back to school, there has been limited free time. We are finally settled in and starting to figure out our new schedules. 

Stella is doing great sleeping in her new room and we have eliminated her 9 pm tube feeding by dividing the last amount into her 4 other scheduled feedings so she is actually going to bed earlier (and waking up earlier too.) I am working mostly EARLY mornings (think 4 am - 10 am) and when I get home from work David goes to class. Stella is continuing to receive Occupational Therapy, Speech Therapy, and Physical Therapy each once a week and we work with her each day on the things that we have learned from her therapies.

While we were in Tucson to see Marsha Dunn Klein she introduced Stella to Mum crackers (similar to Puffs but a long wafer that's easier to hold) and Stella loved tasting the crumbs and even taking little bites. We have continued to let Stella explore with the crackers and she now eats almost a whole cracker in one sitting. Yesterday while she was eating her cracker I actually had to tell her to "finish what was in her mouth before you take another bite." This is such a normal mom of a toddler thing to say but if you told me a couple weeks ago that these words would be coming out of my mouth so soon I would have never believed you!!

STELLA LOVES EATING HER MUM CRACKERS! She went to town on this vegetable flavored crispy cracker and loved being able to hold it herself and take bites. She would get frustrated if I tried to help her. (Mia also loves that Stella is starting to eat things and feed herself; she stayed right by Stella to watch for any scraps she might be able to get.) It was such a great eating experience and it is a big step in the right direction of getting rid of the tube. We know that we still have a long journey from where we are to the point that we can be tube-free. Marsha described Stella as being in the "exploration" stage which means that any time that Stella is open to exploring new tastes, textures, and eating experiences that we need to encourage her to do so. However; Stella is also still a very cautious eater and there are many times when she is not open to new foods entering her mouth - so we have to do a balancing act of helping her to try new things but recognizing when she is not open to exploring so we don't take any steps back. 

The next few months will be a lot of small taste sessions like we had yesterday with the cracker, and hopefully by 2013 we'll be writing about Stella eating a complete meal by mouth instead of a complete cracker!

A Day to Remember...

A year ago today (Aug 13, 2011) we were finally able to bring Stella home from her second open heart surgery. After two months of living at Phoenix Children's Hospital and the Ronald McDonald House we came home to sleep in our own beds (Stella in her pack & play in our room). 

We spent countless hours on the 5th floor in the CVICU at PCH in room 5108 and many days it felt like we would never make it back to our house. We had a <fairly> easy experience with her first surgery, everything was the best case scenario and we were only in the hospital for 2 weeks. We were given a 98% success rate going into her first surgery...for her 2nd surgery we only had a 1% success rate. There were many times when we didn't think that bringing Stella back home would even be an option but a year ago today we had the miracle of coming home as a family.  

It wasn't an easy homecoming, but it was definitely a joyous one! We didn't arrive home with just a baby; we also had a feeding pump (running 20 hours a day), a pulse oximeter, oxygen, and an extensive medication list that required us to deliver meds to Stella every 2 hours.

 We knew that we had a long road ahead of us but every moment was a blessing...we were losing sleep because we had to deliver medication, stop an alarming pulse ox, or add food to a pump, not because we had lost our baby girl. A year really does make a BIG DIFFERENCE. None of the doctors or surgeons that discharged us from PCH expected Stella to be where she is at today. She has continued to be a strong fighter and has overcome so many odds with a smile on her face.

Stella's Aunt Lesley made these heart shirts for all of the cousins to wear while Stella was in the hospital. Stella finally fits in her heart shirt and it is one of my favorite shirts for her to wear...in July 2011 as we took a picture of Stella in her hospital bed with the shirt covering her open chest post-surgery, I could not even imagine the happy pictures we would have the chance of capturing in July and August 2012 as Stella wears her heart shirt proudly.

Aug 13 will always be a day to remember...a glorious day where Stella proved the doctors wrong and showed the world God's grace by coming home with her mom and day instead of going home to God. 

A Curvy Spine, a Happy Chair, and a NORMAL Heart

Today was a busy and great day for miss Stella Bella. 

We started with an orthopedic appointment at Phoenix Children's Hospital with Dr Segal. This was our first time going to an orthopedic doctor and we were referred to see one by Stella's physical therapist. He took an xray and it showed that her spine is curved 22 degrees (so she has mild scoliosis) but her spine is still very flexible. It is great that her spine is still flexible because if the curvature is caused by her right side being weaker then it is possible that as her right side gets stronger it will correct itself.

We then went to the Adapt Shop to pick up Stella's happy chair. We have been patiently waiting for the floor sitter to be completed so Stella could learn to sit up correctly. But when we sat her in the chair at the office it was a <not so> happy chair. She was overly tired from the busy day and unfamiliar with where she was so we couldn't test it out at the shop; we had to just take it home.

Then we went to the cardiologist at the PCH east valley clinic by Mercy Gilbert for a routine echo and follow-up. It was a little bittersweet because this was our first appointment without our favorite NP, Laura, who has been with us since the beginning...but since we are no longer able to see Laura we are now able to go to the office that is closer to home. We started with her measurements and her blood pressure and saturations were normal. She is in the 50th percentile for height at 31.5 inches and the 5th percentile for weight at 19 lbs 10 oz. Then we went to her echo and Dr Puntel came with us to read the echo as it was happening...everything looked great! Her gradiance in both the left and right pulmonary veins was stable and slightly better from the last time. Dr Puntel said that her pressures were "normal!" This is the first time anything about Stella's heart has been described as "normal!" What a relief to hear those words! We are now able to wean Stella off of the diuretic she has been on and we will go back for another echo on September 20th.

When we got home we decided to try to use Stella's happy chair again and she loved it!

The happy chair is made out of a very soft foam that is lightweight yet durable. It is custom-made for each child to provide the right amount of support and to help them sit correctly.

Stella's chair has a table that can slide over it so she can experience what it is like to play with her toys while sitting.

Stella really enjoyed sitting in her happy chair once we were home and in an environment that she recognized. We will use it daily and Gayle, the physical therapist who helped to create it, said that after 3 weeks she usually sees significant improvement.

 Finally Stella is a HAPPY GIRL in a HAPPY CHAIR!

Back to Reality after a MONTH in Paradise

We are home from our Coronado vacation and have quickly gotten back into a busy schedule. It was so nice to have 30 days to relax with family. This past year has been pretty hectic and the time that we haven't been in the hospital we've been working (David and I were doing opposite schedules to be home for Stella so we didn't have much down time). It was such a blessing to have the ability to both be in Coronado from July 1st-July 30th.

Stella did so well by the beach..we joked about trying to get a prescription to move to Coronado <I definitely think it's "medically necessary" for Stella to be by the beach considering how much better she was doing there!> While we were in Coronado, Stella vomited a lot less (on average only once a day and we had MANY vomit-free days), she drank a lot of water thru a straw (up to 3 ounces), she ate and tasted many new things, and her mobility improved significantly.
We had a fun-filled vacation with trips to Sea World, the beach, the pool, Old Town San Diego, Point Loma, Scripps Aquarium in La Jolla, and a lot of relaxing on the island. You can check out some of our favorite memories at the end of this post!

We drove back on Monday and got right back to "work" on Tuesday. Stella had Occupational Therapy on Tue morning, Physical Therapy on Wednesday and Speech today. All of her therapists were very impressed with the progress she was making, especially her speech therapist when she saw her drinking water from a cup and thru a straw. I started working again on Tuesday morning at my new Starbucks store and David goes back to work on Friday night. We are also in the process of moving in with my parents - we hope to be fully moved out of our house before Aug 20 when David starts full-time classes.

The next two weeks are going to be extremely busy with therapies, working and trying to move AND we have some very important doctors appointments coming up.
On Thursday Aug 9 we have a Cardiologist appointment with an echo and an appt with an Orthopedic doctor. We hope that Stella's heart has continued to be stable and improve since her last echo in June. The orthopedic appointment is to check on Stella's spine (because her left side is stronger she mostly uses the muscles on the left-side of her back but this has caused her to sit the left side sticking out more and we want to make sure that her spine has not been affected by this)
On Monday Aug 13 we have follow-up appointments with the Neurologist and the GI doctor. Stella has not had any signs of seizure activity since we have weaned her off the steroids, which is great, but she is still susceptible to having seizures. We also need to talk with the neurologist about what effect her cerebral palsy is having on her development. We haven't seen the GI doctor since Stella had her scope and her vomiting has improved but we need to make sure that she is gaining enough weight and getting enough nutrition.
On Tuesday Aug 14 we have our consult with Marsha Dunn Klein in Tucson to help us figure out how to do a blended diet through the gtube and how to work towards getting Stella to eat more by mouth and get rid of the tube completely.

I'm so thankful that we had July to relax and enjoy great weather because we are back to the Arizona heat and our crazy, hectic routine. Here are some of the memories we will be holding onto until our next vacation!

Ferry Landing on Coronado looking over the San Diego skyline

Yaya's favorite thing to do on Sundays: Concert in the Park

Stella's first trip to the Ocean

Stella's first time in a pool (she loved being in the water)

Concerts in the Park

Old Town San Diego

Our favorite Ice Cream Spot: Mootime Creamery

4th of July Parade

Yaya with her two youngest grandkids at the parade

Stella loved to stick her toes in the water

Stella was drinking water out of my water bottle and then giggling

Stella eating foam off my spoon

Point Loma

The Coronado Flower Lady

Enjoying time with the cousins at Scripps Aquarium

Family pics on the beach

Stella and Everett with their feet in the water