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!)

Continuing to Progress

Stella has continued to make great progress this past month!

Not only has she turned 1 but she also had the best echocardiogram yet! Her most recent echo (April 12th) looked great - her pressures were lower than the previous appointment and the right baffle that has been problematic (mostly because it is so hard to find) was seen and looked normal! We were at once a month echos and now we don't have to have another echo for 2 months!!! We had also started preparing for a cardiac cath to happen probably this summer so that our cardiologist could get a better view of her pulmonary veins - but with the great echo results it is seeming that a cardiac cath will not be necessary! Stella weighed in at 18 lbs 7 ounces and was 29 inches long :)

Stella has continued to be spasm - free and VOMIT-FREE since we have been weaning the steroids. Tomorrow is her last day to get steroids (we are down from a 10 mg dose to a 1 mg dose) and the seizure activity and the vomiting have stayed away. She will continue to be on Keppra but hopefully even without the steroid the infantile spasms and the throwing up will not return. Since she has stopped throwing up she has been a lot more vocal - she loves to talk and scream and she wakes up each morning happy and saying "hi" (well it's more like "HAAAAAA" but I translate it to be a "hi Mama!") She is also a lot more willing to try to eat. We give her tastes of food every day and we even have a special "honey bear cup" for her to learn to drink from. So far she is loving pears and bananas! 

Stella has also graduated to a big girl car seat. She is still rear-facing but we no longer have an infant carrier. This makes it easier and harder - it's nice always having the seat in the car but it's difficult when we go somewhere like the grocery store and need her in a seat. We're looking into getting a baby carrier to solve this problem! 

Stella is also being a big girl by sleeping in her own crib throughout the ENTIRE night and usually for two NAPS during the day! The wonderful sleeping habit is seriously like having a completely different baby - I'm not sure who this girl is but I hope she stays for awhile :)

Stella's Sweet Shoppe

We had a great time celebrating Stella's 1st birthday at Tumbleweed Park with her pink sweet shoppe. The petting zoo and the pink candy buffet were both great but the best part of the party was enjoying the company of so many who have been there for us this past year. Thank you to everyone who joined us in celebrating a milestone! Here are some of the highlights:

Happy (late) Easter

It was a bit of a crazy week with Stella's big birthday celebration and family and friends visiting from out of town so we didn't get the chance to say Happy Easter but we hope that everyone had a great day with their families remembering that there is more to Easter than chocolate, a bunny and eggs. 

Here's a look at Stella from Easter 2011 and Easter 2012

 We've come a long way from the nose feeding tube and the heart monitor that we had in 2011!

Great Friday!

Today is the day for Stella's First Birthday Party!

We chose today because Good Friday is the day that we were finally sent home from the hospital for the first time as a family, 17 days after Stella was born. We decided it wasn't just Good Friday, but rather it was GREAT FRIDAY!

Stella coming home from St Joe's on April 22, 2011

We are very excited to celebrate such a special year and a special life with so many people who have helped us get through the past year. We are so thankful for the wonderful support we have received!

If you are wondering how you could help for Stella's birthday, we have picked a wonderful, local organization that hits so close to home. Stella has everything that she needs and instead of gifts we have asked everyone to consider making a donation to the Nick and Kelly Foundation. This local organization helps Arizona families who have a child with a Congenital Heart Defect by helping to minimize the financial and emotional burden on the families. You can read more about this organization at

http://www.nickandkellyfund.org/

 and you can donate by going to:

http://www.azfoundation.org/catalog/org.shtml?org_id=36180

What a Difference a Year Makes

A year ago today we became parents to miss Stella Grace Sridharan.

We did not know about her heart condition before she was born and we had almost 24 hours of normal "parenthood" before it became recognizable that something wasn't quite right. We would go on to spend many days in the hospital as Stella spent a week in the NICU, 11 days recovering in the CVICU at St Joes and almost 3 months at the CVICU at Phoenix Children's Hospital. As many of you know we have had a roller coaster of a year with many ups and downs. The gift of parenthood that David and I have received is one that thankfully most families don't have to experience and it is definitely far from normal. However, through our experience we have grown in so many ways that have helped us to recognize the blessing that we have received in our abnormal gift of parenthood. Today we had the wonderful gift and blessing of celebrating our baby girl turning ONE! This is such a normal celebration that many families look forward to as one of the many birthday celebrations they will enjoy. For us this day was an unknown for much of the time that Stella spent in the hospital. We were warned that her chances of making it through her second open heart surgery were very low and we spent many nights wondering if we would have one more day with Stella, let alone a whole year. While I always knew that God was in control and He had a plan that was perfect, I did not know what that plan was and there was no guarantee that God's plan was the same as our plan. 

The past 6 months we have seen that God has a BIG plan for Stella Grace and she continues to amaze us with her progress and her wonderful personality.

 

What a difference a year has made!

Big Girl Status

Stella's a 

BIG GIRL Now

Last night we decided to be adventurous and try something new - putting Stella to sleep in her CRIB in her OWN ROOM!! She has slept in our room every night for the past (almost) year except for the nights we spent in the hospital. We never planned on having her sleep in our room but with the feeding pump, the vomiting and the seizure episodes it wasn't realistic to put her in a different room. But she is no longer being fed throughout the night, the vomiting has slowed down tremendously (she has only thrown up once since Tuesday morning!) and she has not had a seizure episode in a week. I was nervous that she might scream anytime she woke up since she wasn't used to this new, cute environment...but we actually had a pretty decent night. She was up really late (which is typical for her, especially hyped up on steroids) but she fell asleep in her crib at around 1 am and she didn't wake up AT ALL until 7 am!! She woke up a happy, talkative girl and played in her crib for a little while and then FELL BACK ASLEEP until 9am!!! It was only the first night, but I am ready to officially say that she is sleeping in her own room :)