A lot has happened in the past two months since you were born. I told you a little about your diagnosis of Micropthalmia in your right eye. About a week and a half after your were born, a hemangioma birth mark appeared on your face. It was light and small and first but quickly grew and darkened. Your Pediatrician, Dr. Sorensen, said if it started spreading, that could be cause for concern. Once it started spreading, I took you back in and Dr. Sorensen referred you to a Pediatric Dermatologist at Phoenix Children's Hospital, Dr. Gildenstern. Dr. Gildenstern said you likely have PHACE Syndrome (which is an acronym:)
- Posterior fossa abnormalities and other structural brain abnormalities
- Hemangioma(s) of the cervical facial region
- Arterial cerebrovascular anomalies
- Cardiac defects, aortic coarctation and other aortic abnormalities
- Eye anomalies
Of course your dad and I googled PHACE Syndrome and read about all of the worst-case scenarios that are posted online. Brain damage, the two sides of the brain not forming together, heart problems...we read that brain and heart abnormalities are the most common with PHACE and that really scared us. We were very worried but tried to remain positive. We had a family fast, where many of your family members fasted for you (including your grandparents, aunts, uncles, cousins and even one of my cousins, Emily Richardson, and my good friend, Heidi Robinson), as well as individual fasts. So many prayers were offered on your behalf. Your dad and I felt a lot of peace after fasting. We felt that everything would be okay with the results and if there was anything abnormal, it was part of the plan for your life and we would get through it together. We were still nervous about the testing, though, since you had to be put under anesthesia for the MRI.
You had all of your tests this past Tuesday, April 28th. After we got to the hospital and checked in, we had a few minutes to wait. Your dad and I found a quiet corner in the cafeteria, where your dad administered a Priesthood Blessing. He blessed you that your body would be able to withstand the anesthesia (etc). It was a beautiful blessing and we were both in tears. After being admitted and talking with the anesthesiologist about the procedure and risks, we waited for the doctor to come get you in a little room. I held you in my arms and paced back and forth, worried sick but trying to be brave. It was difficult for me to hand you to the nurse when the time came. As we waited in the cafeteria during your testing, I looked around at other parents waiting. One mom was leaning over with her head in her hands. I saw worry and concern on their faces. I thought of the parents who come to PCH over and over for surgeries and tests, the children who are sick all the time or battle chronic illnesses. It was humbling. We were relieved when we were able to see you. You were on a patient bed in recovery, being monitored by a nurse. I was able to feed you Pedialite and then formula, which you happily ate (you couldn't eat formula for hours prior and were hungry). We had to wait two days for the test results, which we received at your follow up appointment with Dr. Gildenstern. Every test came back with negative/normal results. Hearing that was such a huge relief! We felt so grateful and continue to thank our Heavenly Father.
The next hurdle was your eye surgery, which was only a few days later, on Friday, May 1st. Your dad bought a 3-D model eye and showed Oliver the different parts of the eye and explained what the doctor would be doing. We did this for Family Night the Monday night prior to your surgery. We had to go over it a few times because Oliver thought the doctor was going to take out your whole eye. It was fun to see him learning about it.
For as nervous as I was for your MRI and other tests, I was much more nervous for your surgery. I jotted down a few thoughts on a Facebook post the night before:
"This mama is feeling a little nervous tonight. Our sweet little girl is having eye surgery in the morning. For those who don't know, Eleanor was born with an abnormality in her right eye called Microphthalmia (which is fairly rare; it occurs in 1 in 10,000 babies and the cause is unknown). Basically, her right eye stopped growing at 20 weeks in utero and is smaller than her left eye. We don't yet know if she will have vision in her right eye but she does have cataracts on her lens, which will cloud any vision she may have. Her surgery tomorrow is a lensectomy to remove the lens. The thought of my little two-month-old going into surgery has my stomach in knots but we're trying to remain positive. On a very positive note, we thought she may have other internal abnormalities, so she had to have an MRI, EKG, Echo and an abdominal ultra sound earlier this week and all tests came back with normal results. We are so grateful and relieved. This is one special little girl. We love her so much."
So many people commented and offered their support through prayer and positive thoughts. It was helpful to have that support cheering us and you along. I'm copying those comments here so you can read them:
Vilma Estrada Praying for your loved little one, she is so blessed having such great loving parents.
I was pretty emotional on the day of your surgery, especially when they started prepping your for surgery (having us get your gown and socks on, taking your vitals, having us sign consents). I was really trying to be brave but it was difficult. I felt much better after talking with Dr. Bryan (your eye specialist whom you see regularly and performed your surgery) and the anesthesiologist. I trusted they knew what they were doing. I was okay during the procedure as we waited. I really felt okay about it.
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| You were crying because you were hungry and couldn't eat before surgery. |
It was such a relief to see you after your surgery. I got tears in my eyes as I saw the nurse feeding you Pedialite. Everything went smoothly. Dr. Bryan said there were not only cataracts on your lens but other things clouding your vision, which he removed. He drained some of the fluid from your eye and was able to get a good look at your retina, which he said is still in tact. He believes you will have vision in your right eye; it will just be a matter of training your brain to use it. We will need to put a patch over your left eye to help with that process. He also thinks you will likely need to wear a contact in your right eye. When you are older, you will have a prothetic lens put in your right eye.
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| Feeding you after your surgery. I felt such love and gratitude as I looked at you here. |
You are one loved little girl. At only two months old, you have already been through a lot. You're going to be a strong person. I have no doubt you will see adversity and go through difficult things but these things will make you stronger. I hope you never doubt your worth. Your dad and brothers and I love you so much! We are so grateful you're in our family.
Love, Mom
