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!)

So Many Doctors, So Little Time

Stella has been a busy girl lately! She has Speech Therapy on Mondays, Occupational Therapy on Tuesdays, Physical Therapy on Wednesdays and usually at least one other doctor appointment at some point in the week.  The past couple of weeks I have realized how blessed we are to have some pretty amazing doctors (and how frustrating it is when a doctor doesn't meet our expectations.)

Recently Arizona Business Magazine released their Health Care Leadership Awards and Stella was lucky enough to have two doctors mentioned! Her main cardiologist, Dr Stephen Pophal won the award for the best physician (see the article here) and Stella's heart surgeon, Dr John Nigro was a finalist for the best surgeon. Although my opinion is a little partial, I think Dr Nigro definitely deserved to be the winner-he did save my baby girl's life TWICE after all!

Today we had a cardiologist/echocardiogram appointment. The results of the echo were good, nothing has changed in 6 weeks. We are so grateful to have Stella's cardiology team, from her award winning cardiologist to our amazing Nurse Practitioner, Laura, who is always willing to answer any questions and make sure that Stella is getting the best care in every area. We brought up some concerns we have about Stella's neurological activity, GI issues, and eye issues and Laura gave us better answers and guidance than the specialties in each of these fields has done. I seriously don't know how I would have the confidence I need to take care of Stella without the help of Laura and the team that Dr Pophal has provided us with. 

Neurologically Stella has made a lot of advances that have really amazed us. She is a happy girl full of personality. However, a couple weeks ago, Stella started a behavior that concerned us and the soonest we could get in to see our neurologist was April 3rd. About 5 times a day (and usually once in the middle of the night) Stella makes a few involuntary jerking movements with her arms that we think might be a sign of seizure activity. We have video taped her doing this a few times to show to our doctors but today Stella decided to show Laura herself. Laura was also concerned by this and is making an effort to contact our neurologist to do what she can to get us in sooner so we're not waiting a few weeks to get this checked out!

I think that having a doctor as helpful as Laura has really set the bar high for the other doctors we see because I expect all of them to give us that level of care. Unfortunately, it's not very common, especially with our GI doctor. We have not made a lot of progress in figuring out why Stella vomits so much and finding a way to help her. The last GI appointment we had two weeks ago our doctor recommended changing her feeding schedule to a faster rate and coming back in two months to see how she was doing - what am I supposed to do for two months with a barfy baby?! So Dr. Mom took matters into her own hands and created an even better feeding schedule that works best for Stella and for us and I'm looking into finding another GI who might be willing to look outside the box for some answers. The good news is that now Stella does not get continuous feeds throughout the night, her last feed stops at 10:15 pm and her morning feed doesn't start until 9:00 am - which means NO MORE WAKING UP EVERY MORNING AT 2:00 AM to add more feed and NO MORE FEEDING PUMP MAKING NOISE ALL NIGHT LONG. This has been a huge relief leading to a few nights of uninterrupted sleep for all.

We are also seeing an ENT (ear, nose and throat) doctor on Monday to see if he can give us any insight into her gagging. We're hoping they can do an upper airway/esophagus scope to see if there is any inflammation or anything that would cause her irritation and make her gag. 

A few weeks ago we also saw a pediatric ophthalmologist (eye doctor) thinking that her right eye was weaker due to her brain damage. We went into the appointment thinking Stella would get a patch for her left eye to wear throughout the day to make her right eye stronger. The doctor we saw thought that Stella had a congenital eye defect that was completely separate from her brain damage and that she needed surgery. The idea of another surgery isn't the most pleasant for us and the doctor only operates at Cardon Children's Medical Center- which is a great hospital but is not where Stella's medical team is, which makes us uncomfortable with the procedure. At first the news of a congenital eye defect sounded great because we finally had something that was not due to her neurological damage and otherwise her eyes were "normal." However, after thinking about this for awhile we have decided that we need to get a second opinion (hopefully from a developmental eye specialist) because the weaker eye due to her condition makes a lot more sense.

Stella is a trooper through all of the different visits and as long as I play her favorite YouTube video "Twinkle, Twinkle Little Star" by the Gigglebellies she is usually smiling the whole way through. Stella has come a long way since she was admitted at Phoenix Children's Hospital in June and we are going to continue to do everything we can to make sure she has every opportunity to continue in her progress. Thank you for being a part of our journey, because even with award-winning physicians, we would not have gotten through this past year without the support of our family and friends who love Stella (almost) as much as we do :)

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.