I wish I had more time to update our blog because SO much happens on a day to day basis and when I do finally sit down to document everything, happenings slip through the cracks. Is it possible that some things are more important than blogging? Gasp!
Our Nurse Case Managers referred us to a Community Health Nurse who makes home visits on a regular basis. She does weight and length checks and points us in the direction of many resources. Last Friday, May 25th was our first visit with Amy Christensen, our assigned nurse. Amy is such a sweetheart and made me feel so at ease. She had all of Zoe's medical records but made the effort to get to know me and more about our family. After measuring Zoe, she weighed in at 7 lbs. 14 oz. and 20 3/4 inches long. That is 6 ounces gained and 1 3/4 inches grown since birth! Amy also signed Zoe and I up for WIC and because of the medical necessity, we qualify for a brand new Medela breast pump. I have been so concerned about how much we have been putting out in rental fees for the pump from the hospital, so this came as a very pleasant surprise. What a blessing!
Amy also came by for another visit this last Tuesday, May 29th for another weight check. Zoe weighed in at 7 lbs. 14.5 oz. Unfortunately, those numbers aren't ideal... as she only gained half an ounce in 4 days. Average newborns gain about 1/2 ounce daily... which leads me to my next topic.
Zoe is eating 65-70 mils of fortified breast milk every three hours. This is a 24 calorie diet. Unfortunately, a large portion of each feed is not staying down. She takes about 10 mils by bottle and then the minute we start putting the remaining 60 mils down her tube, she fusses and cries. I can tell she is uncomfortable because she squirms like it's painful. Shortly after her feed, she vomits... often out her nose and even back up from her stomach through her tube. I have found that she doesn't fuss as much if I do the gavage feeding with her laying upright on my chest, but is still followed by vomiting.
After speaking with our case manager Paula and our pediatrician, Dr. Rollin, Zoe might have reflux. Dr. Rollin put Zoe on Prilosec and hopefully we will see results from that. Since her 2nd surgery is most contingent upon weight gain, I really hope that we can get on top of this issue and it doesn't become a setback. Dr. Rollin also referred us to a Gastroenterologist, but the soonest appointment I was able to get is July 13th. We have an appointment with our cardiologist on Monday, and hopefully this new discovery of reflux will get us that much closer to her g-tube placement. I am optimistic that the g-tube feedings will be more comfortable for Zoe. If anyone can get us into a GI Doc sooner than July, it will be Dr. King!
Memorial Day weekend came as a huge relief having Andrew home. Not only did I get to sleep in my bed for the first time all of Friday night, I got lots of naps and Londyn got tons of attention from Daddy.
Sunday was special because Andrew stayed home with baby and I got to take Lulu to church. Of course we were 45 minutes late, but hey- we made it! It was a strange feeling to be at church for the first time in 6 1/2 weeks. I was more anxious than I have been in a long time. I have always craved social interaction, but since I have been hiding out for almost two months... seeing and talking to so many people was overwhelming. It's hard because I love our ward family so much and these are the people that have been bringing us meals for weeks, calling, emailing and helping in every way possible. I thought I would feel a sense of "home" and comfort by being around loved ones, but I think it will just take some time. My "normal" isn't normal anymore, which is hard to let go. One day at a time!
Confession... I hid out in Londyn's nursery class with my mom for the second hour. Londyn was SO happy to see all of her friends! Here she is playing Dora and Diego with her friend Kyler.
After Lulu and I took a long Sunday nap together, we all went over to my parents house for the very first time. They invited us over for a delish dinner of salmon and chicken skewers. Before Zoe, spending time at my parents house was a regular event... so having her with us felt so refreshing and hopeful for more outings as our new family of four.
Memorial Day evening, we went out to dinner with my brother Kev and my sis-in-law Bec to Olive Garden. Londyn got to stay at their house to play with her cousins and Zoe tagged along on our double date. This was another first for Zoe! Her feeding tube was a perk because I could eat and feed her at the same time by just putting her in the car seat and holding the tube. After lots of laughs and filling our bellies, we went back to their house. We ended up hanging out for 2 hours with the fam. Zoe is quite the party animal!
Zoe's medications have become a lot easier to get a handle on except for the fact that they are all compounded into liquid form... which means we have to fill them at a compounding pharmacy. I didn't know this, but compounding pharmacies are far and few! We can fill them at the hospital, since we are there so often... but it isn't convenient when you are in a bind and then have to make an extra trip up to Emanuel JUST to go to the pharmacy. After making a bazillion phone calls and spending way too long listening to hold music while waiting to talk to my insurance company, I found a compounding pharmacy that does free mail delivery. Mail delivery = one less trip out... music to my ears.
Today I took Zoe to the Wound Clinic for her weekly appointment. Her wound is completely closed and looking FAB-U-LOUS! The best news ever is that they don't need to see us back!
Here is Zoe after I fed her in the car, she puked and I changed her into a fresh clean outfit. Too dang cute!
I was up holding Zoe a few nights ago and she was fed, changed and sleeping soundly. I should have been taking advantage of the short window of time I had to sleep... but I took a few moments to just look at the baby in my arms. I have loved her so much since the day she was born, but it was then that I knew I was head over heels in love with my tiny little Zoe Grace. The last 7 weeks have been emotional, exhausting and downright scary. Now that we are finally together and home, I have finally been given a chance to truly bond with her.
One of the reasons that I loved the name Zoe, is for it's meaning... "Life." Grace was so fitting for her middle name because without the grace of God, we would not be able to witness such a precious miracle.
My days are filled with so many challenges and blessings all in one... but it is the sweet moments with my girls that make it all worth it.