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.

Stella's has glasses and a splint

Sorry it's been awhile since I've posted any updates but there has been a lot going on! As you can see in the video Stella is usually very happy and she has been very talkative the past week. She is a lot of high-energy fun when she is awake but that makes it hard to get anything extra done unless she's asleep (finally something that's a "normal mom" problem)
Stella got her glasses a couple weeks ago...when she first had them on she was just looking around for a long time (it was like she could finally see the world.) She soon discovered how to pull them down and wear them like a necklace so it's become a daily battle to keep them on her eyes-but she's pretty cute in glasses!
Yesterday, Stella's hand splint arrived - it is for her right hand to help open up her thumb and to keep her hand from constantly being in a fist. She wears it for a couple hours each day and she doesn't seem to mind it.

Medical Update:
We saw a new GI doctor that we really like! She came up with a plan and is being very proactive at helping us figure out what causes Stella to vomit. The first thing she's doing is an endoscopy - we scheduled this for Monday, June 4th. Stella will get general anesthesia and they will do a scope of her stomach to see if they can find any inflammation. It's always nerve-wrecking to give a heart baby anesthesia but we think that a scope is the best first step to figure out her gi issues.

Last Wednesday we took Stella to the Emergency Room because she had her first common illness. That day she had thrown up a TON (10 ounces in 3 hours) and had a high fever so we wanted to make sure she wasn't dehydrated. We were only there for a couple hours and they drew blood, took a urine sample, and gave her IV fluids. All of her tests came back normal and we got to go home and care for a sick baby. The next day she woke up happy and has been doing fine ever since. The AMAZING thing is that since we've been home she has only thrown up TWICE! That's only two times in 7 days (and no we're not sneaking her steroids!) We're not entirely sure what caused the change because we have slightly gone up on two of her meds and we've been taking her to a naturalistic chiropractor who has adjusted her stomach - but we gladly welcome the change.

Stella also had an EEG two weeks ago and we had our neurologist follow-up last week. The EEG was abnormal (which is to be expected with her history) but there were NO SIGNS OF INFANTILE SPASMS which is great! Stella is still at risk to have regular seizures but hopefully the infantile spasms are gone for good.

Stella's been a busy girl but we always find time to have fun and laugh each day. Here are some great pictures from bath time:

Stella loves to babble!

Stella was talking like crazy on the way to and from her ENT appointment today! Although every time I turn the camera on she usually stops, I managed to catch a little bit of my Chatty Cathy. Her silly sounds and cute expressions have us laughing all day so I hope you enjoy watching her personality on camera.

On another note, we had an ENT appointment today and we were hoping to get some answers (or start the process of getting answers) as to why she is vomiting so much. We loved the ENT doctor that we saw...Dr Scott Schraff, but we didn't get many answers. He said that our GI doctor should be able to do a scope (we explained to him that the GI doctor we were seeing wasn't doing much to help and that she told us she couldn't do a scope, that we would have to see an ENT to get a scope so he recommended a GI doc that he works closely with). He said that she looked great from his point of view - she was clearly swallowing well and not having any trouble breathing or showing any signs of aspiration. It seemed to him that her upper airway was fine. He said that if there was any irritation causing her to vomit it would most likely be in her stomach so the GI should do a scope to see if that was the problem. If it wasn't anatomical it could either be neurological (something that could have been caused by her brain damage) or it could be caused from her heart surgery (he said it is common in heart surgeries for the vegus nerve to be irritated during surgeries and this can cause vomiting.) Unfortunately if it isn't anatomical it is hard to test for the specific cause and there aren't many solutions so it's a "wait for it to pass" kind of scenario. Our next step will be to make an appointment with the GI he recommended and to do a scope to rule out an anatomical (stomach irritation) problem or to determine that it is anatomical and to fix it. We're hoping that we can find ANY solution to stop the vomiting because Stella is a much happier girl when she isn't throwing up 6+ times each day. 

Nurse Appreciation

This past week was Nurse Appreciation Week and WE LOVE OUR NURSES!! We have had the support and encouragement of so many nurses this past year. Two of Stella's grandmas (her Nana and her Aji) and two of her aunts (her Aunt Lesley and her Aunt Laura) have the privilege to also call themselves nurses and I hope they know how appreciated they are for their selfless career choice! 

We also love the nurses who helped us while we were at St Joe's and Phoenix Children's (and some of them were even there for us at both hospitals.) To show our appreciation to these nurses we decided to bring them some goodies while we were in Phoenix today. 

Stella was a happy girl showcasing her treats and I hope the nurses of the CVICU and our favorite Nurse Practitioner, Laura, got a slight glimpse at how much we appreciate them. While we were in the hospital the CVICU nurses were always so great. Normally it is one nurse to two patients but there were many days when Stella had her own nurse, or even two nurses to just her, because she was in such critical condition. The nurses worked 12 hour shifts with no breaks and a critical, stressful patient (and an on-the-verge-of-hysterical family) without complaining. The doctors and surgeons did an amazing job at fixing Stella's heart but the nurses kept her alive. They were constantly her advocate and our support and there is absolutely no way that we could have made it home without them. We made some great relationships with some of the nurses and I am so thankful that they are a part of our lives. 

I hope everyone took the chance to appreciate the nurses that they know this past week...but I hope that the nurses know that they are appreciated EVERY day for the amazing, difficult, and miraculous jobs that they do.

Learning to Dance in the Rain

Stella rocking her eye patch

So we've made a few changes in the past week. 

We saw a new pediatric ophthalmologist who determined that Stella's right eye is weaker than her left but she also has astigmatism in both eyes. We hope to help this without surgery by "patching" her left eye for an hour each day and to get baby glasses. 

Stella has been off of the steroids for two weeks now and we have not seen the infantile spasms return but the vomit rocket has rejoined our family. It has slowly gotten worse each day and we are not sure what is causing her to throw up and why the steroids stopped the vomiting. She will have an EEG next week on Wed May 16 to make sure there is no signs of infantile spasms and to make sure that the seizure med that she is on, Keppra, is stopping the other type of seizures that her last EEG was showing. We're hoping that the EEG shows no signs of the infantile spasms and that the vomiting coming back is not an early sign of the spasms returning. We have an appointment with an ENT (ear, nose and throat) doctor this Friday to see if there could be some inflammation in her stomach or esophagus that is causing the vomiting and we're praying that we finally get some answers. Stella hates throwing up, we definitely hate watching her go through vomiting/dry heaving multiple times a day and it would be nice to not be covered in vomit (especially when it happens in public and I don't have a change of clothes) and to not have to do 1-2 loads of vomit laundry each day. The return of the vomit rocket has also caused Stella to not want to eat as much and we have gone backwards on the progress we were starting to make with baby food and water. 

Stella had her weekly Occupational Therapy today and with the help of our therapist we have decided that it is time to get Stella a splint for her right hand. We were hoping that her right hand would open up more with the therapy but she constantly tucks her thumb in her fist. 

Today we went to try on glasses for Stella to see what size she needed. I guess I was feeling a little overwhelmed with everything that has happened this past week and all of the changes because seeing her in glasses made me cry. So I'm gonna share my little pity party real quick but I'll preface it by saying that I am so thankful for Stella and the progress that she has made since we brought her home from the hospital in August - she is amazing and where she is at now is very encouraging. But having a child with special needs there are often days that feel discouraging - today was one of those days. Most of the time I am able to find the positive and "dance in the rain" but today I just felt like crying in the rain. We already get a lot of questions and stares when we're out with the feeding pump. Usually it's "Oh, what's wrong with her." I HATE THAT QUESTION! It's not one thing that is wrong but it's a lot of things that are different and I don't think the curious people (who really do mean well) know what they are asking with that question. It's not a simple answer. Well now we get to add on eye glasses (and I know kids in glasses can be really cute but the baby glasses look like swim goggles and they really aren't that cute), an eye patch, AND a splint on her right wrist. I just want to be able to go in public and get the normal responses of "she's so cute," or "how old is she" but it's hard for people who don't know Stella's story to see past the differences. I just wish they could see what we see - her contagious smile, her adorable laugh, her pretty hazel eyes, and her very social (and often stubborn) personality. 

I honestly don't mind answering questions about Stella and I love being able to share her story, because I think she's pretty incredible and I know her story can touch a lot of lives. I just think there's a much better way to approach it. I guess since Stella is throwing up again we could use the vomit rocket to scare these people away - nothing ends a party like getting thrown up on  (don't worry, I'm just kidding!)