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 :)

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 :)

Birthday Countdown

 Birthday Photo Shoot with Aunt Amber

I can't believe this cute girl will be a ONE-YEAR-OLD in a week!!! She has had an eventful year with 4 hospitalizations. Her most recent hospital stay was very different for us because we weren't on the 5th floor (the CVICU) where we feel at home. This time we were on the 8th floor, the neurology/seizure unit where Stella had an MRI and a 24 hour eeg. We discovered that she was having infantile spasms, a type of seizure that can be very damaging to an infant's brain. Thankfully we brought Stella into the ER instead of waiting for our neuro appointment to figure out what was happening - our neurologist told us that she has seen families who wait a few weeks and their baby comes in for an appointment with no personality and just a blank stare due to the brain damage they have suffered from the spasms. Well little miss Stella has definitely not lost any of her personality! We left the hospital with two new medications, keppra and prednisolone (a steroid). The neurologist warned us that the steroids could make Stella very hyper, hungry, and ANGRY. The "roid rage" has hit our household but it only stays for a short time each day. Stella is very hyper and since we have come home from the hospital she takes a very short nap each day and doesn't sleep through the night. However, she has also been very playful and talkative (we think she is saying "Da Da," "Ma Ma," and "YaYa") The angry baby shows up usually in the afternoons/evenings for thirty minute screaming sessions where it seems like she is overly tired but completely fighting wanting to sleep. The steroids are a temporary thing, thank goodness!, that should be gone in about 30 days - they are definitely working though. Stella's last seizure episode was on Sunday morning and Stella has gone over 48 hours without throwing up! A vomit-free Stella is a huge deal to us because she has never had a full day go by without throwing up and it had gotten so bad that somedays she would throw up or gag 12 times. I am not sure it the vomiting was directly related to the seizures but it has definitely gotten so much better with the seizures going away.

We have a lot to celebrate this next week and it is so great to see how many milestones Stella has reached over the past year (the big ones like surviving two open heart surgeries and the little ones like making it through an entire day without throwing up!)

11 Months!

Our sweet girl is 11 months old today!

This past month has been a month of exploration for Stella. She has discovered how to blow raspberries and loves making new noises with her mouth. She has tasted bananas and seems to like them (to help her overcome her oral aversion we let her hold, smell and taste many foods but most of the time it is only a "touch and go" to her mouth. When we put baby food bananas on her tray it was the first food that she really tasted and swallowed.) She loves to shake her head "no." Stella enjoys playing "peek-a-boo" where we hide her face and she reveals herself to us. Stella has discovered our dog, Mia, recently and she loves to give open mouth kisses and touch her fur. 

Today during physical therapy, Stella rolled by herself from her stomach to her back for the first time (and even though it was out of her frustration from being on her stomach for tummy time it's a big milestone!)

Stella has come so far since we left Phoenix Children's Hospital and she is already doing things that at one point we weren't sure if she would ever be able to accomplish. It is exciting to see the progress she is making and it is very evident that she is a determined, stubborn little girl who is not going to let many things hold her back. I am so proud to be her mom and I look forward to watching her accomplish so much more.

I can't believe that we are now only one month away from her 1st birthday, but we can't wait to celebrate our special girl on her special day with so many people who have helped us get where we are today.

A Tooth at 10 Months

Stella is 10 months old today! And to help us celebrate she cut her first tooth 

(I couldn't feel it yesterday but her bottom left front tooth is definitely sticking out today!)

At 10 months old Stella is an active, happy girl. She sleeps thru the night most of the time but doesn't sleep much during the day...she is too busy having fun to sleep :)

Some of her current favorite things include:

This dog, Violet. 

Stella loves music and Violet sings to Stella and even has a couple songs about her. When we press Violet's paw and the song starts Stella gives us a big smile.

This colorful ball.

Or anything that she can hold with her little hands, Stella loves how easy she can get her fingers to hold this ball and she swings it all around once she gets a hold of it.

This NUK brush that was given to us by one of her speech therapists 

(although she doesn't always love speech therapy)

She currently loves putting anything that she can in her mouth as long as she is the one in control and this special sensory brush is one of her favorite things to rub on her gums.

We are still trying to get Stella to enjoy tummy time but she loves laying on her floor mat and she is getting very close to rolling over. Stella loves spending time with us and constantly wants us to cuddle with her, sit her up on our laps, or help her use her legs to stand tall.

It has been so great seeing Stella's feisty, fun, fearless personality form over the past 10 months and I am so thankful to be able to continue to see her develop.

Growing Girl

Our 8lb 9oz bundle of joy is growing out of things now! 

Stella was born 21.5 inches long and at her doctors appointment today she was 28  inches long and weighed in at 16lbs 15oz! After we were discharged from the hospital in August she was no longer on the chart for weight but for the past 4 months she has remained between percentile 5-10.

 

 Our tall 9 month old girl has officially outgrown her baby bathtub and her bassinet. She is now sleeping in her pack n play in our room. She slept very well her first night but she also discovered that she now has room to move around while she is sleeping and she took advantage of it! 

Stella does have her own beautiful room that I hope she will get to sleep in some day

But for now she is happy sleeping in her new bed in our room...until the vomiting/gagging gets under control