We knew there was a chance one (or both) of the twins would have Galactosemia, so when they were born we put them on Soy Formula and waited for the Newborn Screen results. From the moment they were born Amelia had oxygen/breathing issues, so I didn't even hold her. I heard two babies cry, I heard reports of two "good size twins" but it took me a little bit to realize I only had Baby B on my chest. I finally said "Where is Baby A" and that's when Chris (or someone) told me she was having some breathing issues and was on Oxygen.
I didn't think much of it at the time in relation to Galactosemia, but I probably should have - that is exactly how things started with Francesca. Amelia was taken to the NICU and Annabelle was able to come in the room with me. The next few days were a roller coaster - but a familiar one. Amelia's white blood count was low and there was something showing on her lungs (likely fluid), so they put her on an antibiotic. One thing would get resolved (coming off oxygen) and then another thing would pop up (IV for possible infection). Then her blood sugar was off. I'm not sure after which "new" issue I realized it, but I remember saying to my mom "If we have another Galacto Girl, I'm pretty sure I know who it is." If you look back at one of my first blogs about the Seven Day Eternity - these were all issues that Francesca had. Francesca was never put in the NICU though - when she was born Sparrow had a "Special Care Nursery" and she was there. I was able to hold Francesca from the beginning. That was not the case with Amelia - she was in an incubator and hooked up to all kinds of stuff. I didn't get to hold her until the day after she was born.
And then of course this time we had the added complication of my C-Section, so I was in more pain and not as mobile as I was with Francesca. It made for a stressful and scary time. I think the scariest (and most infuriating) moment was when Dawn and I went to the NICU to see Amelia and they were putting an IV in HER HEAD. She was screaming, there were two nurses and NO ONE was saying anything to me. I was terrified, I had no idea what was happening and I was helpless watching my baby scream. I soon learned her IV in her arm had gone bad and the head is one of the best places for babies - BUT no one told me that at the time. As you can tell, I'm still a little bitter. I understand they were just doing their job but a little communication would have been nice. Anyhoo....
On day three we got the results. Chris had just left to see Amelia in the NICU and I was pumping, when a doctor knocked on the door. Results were in - Amelia had Galactosemia. Annabelle didn't. I was prepared for this, I knew it was a possibility but it still felt like a punch in the gut. I cried, a lot. How in the hell was I going to handle one baby with galactosemia and one without. It seemed very scary and overwhelming.. And yet, I was also relieved. Relieved Annabelle (who at this point I was already calling "Annie" and constantly singing "Sweet Annie" by Zac Brown Band to) didn't have it and relieved to know that was likely the reason behind all the issues Amelia was experiencing. 
Amelia was discharged from the NICU and we were able to have the girls together for the first time and a newborn photographer came in and took pictures. With most everything resolved, except Amelia's bilirubin, we were able to go home on May 15, with a light therapy blanket for Amelia.
As we settled in at home we started figuring out the formula situation. We purchased color coded name bands for bottles (blue for "anna blue belle" and orange for "agent amelia orange.” I have no idea guys - I was tired, and it made sense and stuck!) We also bought two Dr. Brown formula pitchers - one for soy formula, one for dairy. Over the course of the next few months there would be several times I would dump a formula container because in my sleep-deprived state I wasn't totally sure if it was soy in the soy pitcher or dairy in the dairy pitcher.
The first metabolic appointment was at lot less scary and overwhelming than with Francesca. I didn't cry all the way home and although I still had moments of anger, sadness and uncertainty - I knew we could and would handle anything the condition threw our way.
As the girls started to develop, Amelia (Galacto Girl) hit the major milestones before Annabelle. She rolled first, crawled first, cut teeth first, walked first, talked first. If Annabelle would have been the one with Galactosemia I would have definitely thought it was the condition. I guess it made sense, she was "Baby A" - the first to be born, I guess she had to keep up the signature "Baby A" by being the first at everything! But it was just the case of kids developing and hitting milestones at different times. You notice it a lot more when you have two to compare. We do have Early On coming for visits monthly to watch for any delays, but at two years old, Amelia continues to exceed expectations.
We knew they weren't identical since one had a genetic condition and the other didn't - but they also didn't look identical. As they got a little older I had a couple moments of panic. I remember a time around their baptism that I started freaking out about getting them mixed up or other people mixing them up - and I labeled their diapers. 🤣 That lasted about a day. And of course when I went back to work and the nanny started I worried about her mixing them up, so I wrote down all the differences (Amelia had more hair, Annabelle was smaller, etc.)
Everything is still color coded. The name bands are now around sippy cups instead of bottles; Amelia has green sippy cups and Annie has blue and dishes are coordinated the same. Other than Vitamin D milk, Annabelle is eating what the big girl eats which means dairy-free mac and cheeze, pizza, etc. Some day we'll introduce her to the real stuff (and with our luck she won't like it), but for now with how they share and drop food, it's just not safe.
Francesca and Amelia are our Galacto Girls and Annabelle is our Dairy Queen. When I was pregnant with the twins, Francesca was obsessed with "Baby B" and that continued until recently. Now she is more drawn to Amelia, who is a little more loving toward her sister than Annabelle (who we lovingly refer to as "bulldozer baby"). Recently the twins started interacting and playing together more; it's fun to watch. It will be interesting to see how relationships develop and change as the twins get older. Of course the twins will have their bond but I expect Francesca and Amelia will also have a special relationship because of galactosemia. It's bound to be a fun (and exhausting) adventure. We hope you'll continue it with us. And I'll try to be better about updating the blog!
Francesca and Amelia are our Galacto Girls and Annabelle is our Dairy Queen. When I was pregnant with the twins, Francesca was obsessed with "Baby B" and that continued until recently. Now she is more drawn to Amelia, who is a little more loving toward her sister than Annabelle (who we lovingly refer to as "bulldozer baby"). Recently the twins started interacting and playing together more; it's fun to watch. It will be interesting to see how relationships develop and change as the twins get older. Of course the twins will have their bond but I expect Francesca and Amelia will also have a special relationship because of galactosemia. It's bound to be a fun (and exhausting) adventure. We hope you'll continue it with us. And I'll try to be better about updating the blog!
