Exciting Changes

So there are some exciting new things happening for Miss Stella!

First of all, Stella had a consultation to get a special floor sitter that will help her to sit and provide her with the support that she needs. We met with Gayle Wiens, a physical therapist who works with The Adapt Shop in Phoenix to help families get the equipment they need to help their child with special needs to reach their potential. Here is a video that showcases Gayle and the "happy chair" that Stella is having custom-made to provide her with the correct support. We are so excited to get our Happy Chair but it takes 4-6 weeks since each one is made specifically for each individual child. In the meantime, Gayle has let us borrow an infant booster seat to try out during feeding time. Stella actually loves sitting in the booster seat and it makes me so much more excited to see how well she can sit up in a chair that is actually giving her the support her body needs.   

 

Another exciting thing is that we have been talking about moving toward a blended diet due to Stella's vomiting and the health benefits of a one year old having real food vs formula. Well today I got a phone call from an Occupational Therapist/Feeding Specialist in Tucson whom we were referred to by our cardiologist letting us know that we are accepted to come for an extensive therapy session with Marsha Dunn Klein. Marsha is the founder of Mealtime Notions and she has written a book about Homemade Blended Formulas. We are very excited to have the opportunity to go to a clinic with Marsha because she will help guide us in the right direction to give Stella a complete blended diet using real food and to get Stella to eat more food by mouth and ultimately be Tube-Free. 

Now the transition to a blended diet is going to be time-consuming and it is a big commitment (it's definitely not as easy as mixing 3 scoops of formula with 5 1/2 ounces for each feeding) but we have yet to figure out what is causing Stella to vomit and we are willing to do whatever it might take to find a way for her to not throw up on a daily basis. We have started a new medication from our GI doctor - it is an antihistamine and the hope is that it will help heal the inflammation they found in Stella's scope and one of the side effects is that it helps with nausea. We have also been adding a probiotic to Stella's formula that her chiropractor has recommended. The next step for us is to find a "base formula" that Stella can tolerate the best. Her current formula, Alimentum, we have been using for a few months and she has had some good days but overall it doesn't make a difference and she still vomits on average 4-6 times each day. We tried a soy-based formula and it was an absolute NO so we are going to try Nestle Compleat to see if it makes a difference. The reasoning is that this new formula is a step in the direction of a blended diet because it has fruits, veggies & poultry blended in with formula. We are finding a "base formula" so that we have a formula that we know Stella can tolerate well to use on days when we are out for the day and unable to bring all of the blended food with us or when we need to supplement the blended diet in order for Stella to meet her calories for the day. 

The last excitement is the results from Stella's echo last week...for the 3rd echo in a row Stella's heart has been consistent with very no surprises and no changes in the wrong direction. In heart words her right baffle (the side that has been difficult in the past for them to find) had a gradiance of 1 (which is great) and the left side gradiance was between a 4 and a 5 (we were told that we NEVER want it to get to an 8 and it had previously been as high as a 6 so we will gladly take something between 4 and 5). Her cardiologist was very happy with the results and we do not have to go back for another echo for 8 WEEKS! We also have learned some SAD but EXCITING news about our favorite nurse practitioner, Laura, who has been with us since Stella's first heart surgery and has been such a great support to us on our heart journey. Laura will be leaving Stella's cardiology group in a few weeks to pursue a new career opportunity with Cardon's Children Hospital. We will definitely miss having Laura to go to with all of our questions but I am thankful that now we can go enjoy a glass of wine together at Postino's. The reason that we have been going to PCH for Stella's past few echos was only because Laura was at the Phoenix location, so now that Laura is leaving we will be able to go to all of Stella's heart appointments in the East Valley! 

We had a great "last" appointment with Laura and we received great results from Stella's echo and the okay to go on our vacation. We leave Sunday for Coronado and we will be there for almost the entire month of July. We feel very blessed to be able to enjoy this time together.

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.

Stella's Favorite Dog

Stella has recently discovered our dog, Mia, and she loves this dog. She gets so excited when she sees Mia and she loves to scream in delight. Since Stella has really discovered her voice in the past few weeks she is extremely "talkative" and this video represents 98% of the time that she is awake. It's crazy to think that when we were discharged from PCH in August we weren't sure if Stella had much of a voice. The first few months home Stella was a very quiet baby and even her cries were subdued...but this girl has found her voice and SHE IS NOT AFRAID TO USE IT! Stella continues to beat the odds and prove the doctors wrong-this gives us a lot of hope for Stella's bright future.

On another note we got the results of Stella's scope from last Monday and the only thing they could find was that her duodenum had some inflammation. Unfortunately this seems to be a revolving door situation where she needs to stop vomiting so the inflammation can heal itself, but while it's inflamed she will continue to vomit. She is throwing up less (about 2 times a day instead of 12) so hopefully we're making progress with the natural approaches we're taking and we can finally get the vomit rocket under control.