CHD Awareness Day 1: 1 in 100

CHD Awareness Week is finally here and I think it is a great time to share the facts that I have discovered about heart defects and help raise awareness of something that has had a huge impact in my life. 

Each day this week up until Valentine's Day I will be writing a blog post with a new fact about CHD and I will be sharing my thoughts on what I hate about CHD, what I love about CHD, the cost of CHD, what it is like to be a heart mom, Stella's broken heart, and finally what YOU can do to help spread awareness and raise support. 

I would like to invite you to go on this journey with me and to share this page with others.

Today's CHD facts are that 1 in 100 babies are born with a heart defect. Congenital heart defects are the #1 birth defect and are also the  #1 cause of birth defect related deaths.

Stella is my 1 in 100

 and this is what CHD looks like to me

Thank you for taking the time to learn about something that is very important to Stella and for letting my precious girl have a place in your heart. 

2 months away from being 2

Stella is 22 months old today and her 2nd birthday is right around the corner! I know it has been quite awhile since I have blogged an update but she has been doing really good (minus two "regular" kid illnesses). We decided that today we would finally change her car seat to be forward facing (she has been over 20 pounds for about a month and her legs were starting to get cramped against the seat when she was rear-facing). She is loving her new view in the car and had fun taking a short ride around the neighborhood. 

You can watch a video of Stella enjoying her first forward-facing car ride HERE

We have also finally decided that it was time for Stella to go in the nursery during church so she could play with other kids and not be so disruptive to us (and the people around us) during service-I know it might be hard to believe but she can scream really loud! The first time we decided we were ready to let her go in the nursery was two Sundays ago...I was the one pushing for her to have the opportunity and David was a little nervous about it. I definitely thought I was ready for this, that was until it came time to say goodbye. I spent the entire time of worship in tears and David was constantly checking his phone to make sure they didn't text us that something was wrong (he even left service to check on her). Stella was FINE and she had so much fun but we were wrecks-it was the first time we had trusted someone besides a family member to take care of our baby and it was a lot harder than I imagined. This last week was a little easier (there were no tears!) and David and I both think it is the right decision to let her play with the other kids. She is in the infant room since it is the best match for her developmental age and it is good for her to see the other kids around her trying to start to crawl.

We also just got Stella a new high chair so that she can sit at the table with us while we are eating.

She loves sitting up high in her new chair and having her at the table with us is helping her be more willing to explore new tastes. She is still getting all of her nutrition through her gtube with a blended diet (she is tolerating the blended food really well and rarely vomits!!) We have found a few things that she enjoys to "taste" by mouth and we try to introduce new flavors and encourage her to eat more of the things she enjoys every day. 

Stella is two months away from turning TWO and she has the attitude to match her age! She is hilarious, playful, and stubborn and she can clearly communicate what she wants and throw a fit if she doesn't get it. There have been some moments when I have to remind myself to be thankful for her stubborn personality. 

This coming week I will be blogging a lot more than usual in honor of CHD Awareness Week. I really want to encourage you to check in on the blog the week of February 7-14 and I would love for you to share it with others as I share facts about heart defects, how it has affected our lives and how you can help spread awareness. 

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.

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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.