9 Months

Happy 9 months to Julia!! Nine months ago I didn't sleep a wink watching the heart rate monitor. Nine months ago the nurses wheeled me in for a c-section, terrified but somewhat relieved this day had come. Nine months ago I did not know your diagnosis but I knew life for you would be a struggle. Nine months ago you were delivered via c-section and quickly whisked away for evaluation. Nine months ago I glimpsed your tiny little beautiful eyes as they wheeled you past me on your way to the nicu. Nine months ago I was in recovery and too weak and sick to make it to the nicu to see you. Nine months ago your daddy stayed with you while I could not be there. Nine months ago we awaited the news of your genetic tests and your ECHO. And, nine months ago I received the most unexpected blessing. Nine months ago the miracle of you came into this world. Nine months ago I became a mommy of three amazing kids.
Today I celebrate your 9 month birthday as a huge milestone. Instead of simply celebrating the day of your birth, I celebrate you and this day and the 274 days since you were born. Thank you for continuing to surprise us daily. Thank you for letting us love you! Happy 9 month birthday, dear one!

Firsts

With Julia, the normal baby list of "firsts" during the first year does not really apply. We have experienced a few of those like first bath, first smile, first sleep through the night (just kidding! We wish!), and first cereal (in with her formula). Others such as first laugh, first roll over, first time sitting alone, standing, cruising, walking, talking -- some of those may happen on a delayed timeline and others may not apply. We have accepted that Julia's list of firsts will be different from Sydney's and Isaac's. Julia has had a very unique week of firsts that I think must be included. On Tuesday she experienced her first earthquake. For the east coast it was a significant quake. It was my first one, too. And today we are waiting for her first hurricane. Two big events in one week! My older kids don't have anything like that in their baby books! :)

Shaken

Yes, there was an earthquake here yesterday, and it was scary. But, it was over quickly and if not for the local news we would have almost forgotten. I wish I could say the same for Julia's cardiology appointment this week. It's not like we expected good news. We were just hopeful that things would be better than they are. Her last appointment with cardiology was 6 months ago. Since then, her lung pressure has increased, her left ventricle has continued to atrophy, and her oxygen sats in her hands and feet have decreased. Her heart has 4 chambers but functions as if there were three. So the blood pumped through her body is a mix of oxygenated and unoxygenated blood. At any given moment she could be getting a lot or a little oxygen moving through her veins. My sweet baby. How I want to make it better. This cardiologist does not see a surgical intervention that would help. We will get a second opinion, but we know her heart has a lot of problems. It's not just a hole here or there. The anatomy is completely off. Somehow, though, it still works. As disappointing as the appointment was, we have to focus on the fact that she's still here with us. Some wise words I read after she was born were "don't be afraid to love her." We do. So much.

A Hipstamatic Week

These are random photos from our week taken with various Hipstamatic lenses on an iPhone. Even though this week definitely had its scary moments, we also shared lots of smiles. Their smiles are so good for my soul. And yes, that is Captain America.

Time: In and Out

This week marks another milestone. Julia is 37 weeks old, which means she has been here as long as I was pregnant with her. I know it may not sound like much, but when we were told we would only have days with her, 37 weeks seems like a long time! Although she's still a tiny sweet pea, we have noticed a lot of changes in her in the past 37 weeks. She has gained a few pounds and inches, she has a lot more hair, she smiles a lot, she eats a lot more, she looks around and seems to pay attention to things, she loves to hear Sydney talk, she wears bigger clothes and diapers (barely), she cries less in the car, she plays with her hands, she comforts herself, she makes different sounds, she can support her head a little bit at a time. She's taking her time, but she is moving forward and learning new things. And she continues to amaze us and everyone who meets her. Happy 37 weeks, my sweet Julia.

Scary Morning

Yesterday was an occupational therapy day for Julia. At her last appointment she was just not into it. All of the moving around and repositioning and a new therapist was just too much. Yesterday's session seemed to go well as Julia was very alert and cooperative. At the end of the session Julia was finishing a bottle when she started coughing and gagging. Its imoortant to know that she very rarely spits up. In 8.5 months, she has spit up maybe 5 times total. I don't know exactly what happened yesterday but she spit everything up and just could not breathe. It was terrifying. Her color changed, the therapist wanted to call 911, and then suddenly she started crying and breathing and pinking up. The whole episode lasted only a few moments but they were loooong moments. I remained calm during the episode but felt shaken for the rest of the day. Julia rested and ate more without incident. She is such a little fighter. And I am thankful she has strong reflexes. I pray this NEVER happens again.

A Kind Doctor

On Monday we had our first appointment with the geneticist. This geneticist diagnosed Julia after birth but had not seen her since then. Since we changed our approach to Julia's care this summer this is one of many appointments we have coming up. I was very apprehensive before the appointment not knowing if this doc would be supportive or not. We were pleasantly surprised and more than a little relieved at how things went. This doctor marveled at the miracle that is Julia (my words -- hers were more along the lines of "extremely rare" and "unexpected"). After asking us tons of questions and examining Julia, the doc's recommendations going forward were the very same as our plans. It is encouraging to have an ally in her as we see various other specialists in search of surgeries and therapies that some may not see as necessary because of Julia's diagnosis. Some friends in the trisomy community have recently experienced a brutal appointment with a doctor who just could not see past the diagnosis enough to care for the living child in front of him. Walking this road is difficult enough without having to protect our children from the doctors who should be helping. Next up for us is the cardiologist in a few days. I am nervous about this one. The last time we saw him he did not think Julia was a surgical candidate. She was 2 months old then. Now she is 8.5 months and we are hoping for a more open evaluation. We already have an appointment scheduled with a second cardiologist from another hospital, so even if this one will not consider surgery maybe the next one will. Wish us luck!