Monday, August 16, 2010

Countdown!

I decided to quit pumping when Chloe turns one and have spent the past month slowly transitioning her to formula. She's down to one breastmilk bottle a day this week. I calculated that I'll get back two hours a day when I do that - reducing Chloe-feeding-related activities from five to three hours a day!

This is my last week pumping. Is it wrong that I'm more excited about quitting pumping than I am about Chloe turning 1 year old? ;-)

Chloe's Cold

Chloe's been battling a cold for the past week. The pulmonologist & pediatrician both said it's just a summer virus that will just run its course. Poor baby has been congested and coughing up a storm. After a few days of progressively worse coughing (and talking to nurses each day) I finally decided I needed the doctor to listen to her. She got the 'all clear'. Whew! I feel like they all must secretly roll their eyes at me because I'm THAT mom who calls and comes in for everything. I don't mind, though. Her cough finally seems to be getting better but I'll be soooo glad when it's gone!

Thursday, August 12, 2010

Leila's Day

Yesterday was August 11th, the first anniversary of the day we lost Leila. Thankfully, my parents arrived in town on the 10th. We were super busy all day. Solana had ballet and swimming in the morning. I then went grocery shopping after pumping and feeding Chloe. Then it was a race to get Solana to soccer practice at 6. I don't know how the day flew by so quickly but I was glad for the busy-ness and for the company. I skipped soccer practice because Chloe hadn't finished her bottle by the time they had to go.


I flipped on the TV while feeding Chloe and resumed an Oprah I started the day before. I only recently started recording Oprah episodes (when I saw the Twilight cast was going to be on). I'll play an episode while feeding Chloe every once in a while. This particular episode was about match-making but somehow turned into a story about a boy who was starting a baking business. He began the project as a way to cope with the loss of his twin brother to cancer. The story progressed and Nate (the Oprah correspondent sent in to help the young boy) talked to the parents. The mom mentioned that it was hard to move on after their 9 year-old passed away because she was constantly smacked in the face with the fact that he was gone. Christmas. Thanksgiving. His birthday. The list went on and on. After doing so well all day I was practically sobbing watching this show. I felt so sorry for that little boy and his parents. Nate, who also suffered a difficult loss in his life, talked about the way he learned to cope with those difficult days. He said he had to realize that those days did not have power over him or over his memories. The dates were not important. After realizing that he knew that the memories would come and go but they were not dictated by the calendar.

I thought it was odd that I randomly watched this episode on the 11th. Some things are just inexplicable, I guess. Maybe I needed to hear him say this.

Dave and my dad picked up steaks from Outback after soccer and Solana led us in prayer/song before we ate. We finally headed outside - each carrying one balloon to send to Leila. Solana gave Leila a head's up that they were coming and Chloe released her balloon first. My mom said, "Oooh! Chloe wants her balloon to get there first!" It seemed appropriate. It was very sweet and sad. With smiles on our faces and tears streaming down our cheeks we wished Leila a "Happy 1 Year in Heaven" and told her that we miss her. We watched the balloons as long as possible. We even sent one up to my Grandpa, who passed away just a couple of weeks ago on July 26th. We ended the evening with angel food cake.

I'm so lucky and blessed to have such a wonderful family. It's days like these that I realize it the most.

Thursday, August 5, 2010

Chloe Reflux

I've been avoiding the blogosphere for the past few weeks. I'm not completely sure why but I definitely have. I'm sure I have tons of catching up to do on all my friends.

The main purpose of this post is to publish an update on Chloe's reflux and ask for advice.

Update: I followed the advice from my blogging friends and Chloe's spitting up has decreased to almost nothing! Here's our technique:

-Feed Chloe in an upright-ish position.
-Hold her still for 5-10 minutes after she finishes eating (unless she's feisty and starts bucking like a bronco)
-Then pick her up and hold her upright against me until she burps.
-Finally, make sure to hold her or keep her sitting for at least 30 minutes after feeding.

THANK YOU to the moms who commented on the last reflux post. These new techniques are 100% derived from those comments and they're making a world of difference. I used to feed Chloe a bit then pick her up and pat pat pat. Feed her a bit more and pat pat pat pat pat. Burps were hard to come by and when they arrived they usually came with a bunch of spitup or an awfully wet strained sound. Now the burps are BIG CLEAN POOFS OF AIR. They sound WONDERFUL. I also noticed that keeping her still for a few minutes after eating is they key to getting a good burp - almost like the burp needs to gather itself before I pick her up and let gravity push it up. I don't even need to pat anymore and my wrist/forearm are very happy for that.

We visited the pulmonologist yesterday. Chloe gained almost a pound since we saw him a month ago. She's now 14lb 5oz. Again, not too bad but he wanted to see more. I filled him in on our fantastic spitup progress and expected a pleased response. After all, I solved Chloe's spitup problem without using Zantac! Yay me, right? He was holding Chloe, looked at her, and said in a baby voice, "Chloe, can I spank your Mommy? She's in trouble because she didn't give you your medicine." Chloe said, "no." He then went on to explain that the techniques I started using are great for the spitup and congratulations on that but she still has really bad reflux even if she doesn't spitup. The acid comes up and burns her throat - which could cause a decreased appetite. THAT'S what the Zantac is for. Uuuh. Whoops. My bad. He apologized for not explaining that better but I still feel bad. "I thought her reflux was mild. Her pediatrician isn't concerned. And how do you know anything about her reflux, anyway," I ask. Apparently, Chloe's pulmonologist is the only person who really looked at her swallow study because that's where he saw it. I'm mildly annoyed at her pediatrician but he gives me a very diplomatic speech about all Chloe's doctors being a team and they each catch different things. I still think he's by far her best doctor.

RX: Keep Chloe on oxygen for feeds and (this time) start giving her Zantac. We'll see him again in 3 months time.

QUESTION: Does anyone out there have any great techniques for giving Zantac to an infant. I tasted a dose and it has a pretty strong mint flavor. And my palate is a tad bit more developed than Chloe's. I feel so mean every time I syringe it into her mouth. Her little face scrunches up into a look of pure disgust and she tries really hard to roll away from me. There's just got to be a way to sneak it in....

Wednesday, July 14, 2010

Chloe Giggling

It's easy to keep my spirits up when I have this one to keep me company all day :-)

http://www.facebook.com/home.php?#!/video/video.php?v=414284130840

That Time Of Year

This post isn't the usual Chloe post. It's more about me and it's probably not going to be super upbeat....just to warn you.

I've followed a few micro-preemie/single-survivor-twin blogs since Chloe was born. They've been SUCH a blessing! I was armed with knowledge during Chloe's NICU stay and knew the right questions to ask and expected some things that would have otherwise surprised me. Of course, there were still plenty of shockers and plenty of times when this non-medical mom struggled to grasp exactly what was going on with Chloe's little body. And it didn't end in the NICU. There are still plenty of struggles that Chloe shares with her little buddies. I eagerly read my friends' blogs to learn new tips and techniques and understand struggles that may (or may not) be forthcoming for Chloe.

So with all this experience to guide me I knew what was coming for me. I knew this time of the year would be difficult. But I had time to prepare myself. I was rocking Chloe the first time I started traveling back to last year. And it occurred to me that my pregnancy planner was somewhere in my room or Chloe's room. (This book had a weekly planner where I kept doctor's appointments and noted any and all important information. At the beginning of the pregnancy I marked the pregnancy test date, my weight and measurements, exercise routine, diet/cravings, pregnancy symptoms, etc. Then I marked the date we found out we were having twins!, TTTS diagnosis, bedrest, Girls!, laser surgery, Leila's blood transfusion, Leila's passing.) I decided that day, sitting in the glider with Chloe snoozing in my arms, that I would NOT look for the planner. Knowing exactly what was going on last year would just be too much for me. Then I had a little conversation with Leila about how much I love her and that she should know just how much I miss her even if I don't fall into despair reminiscing last year.

I'm certain I cried more during the last two months of pregnancy than the whole rest of my life combined. Those two months were pretty much a constant flow of fear, surgery, more fear, more surgery, loss, and sorrow. Even the happy memories, like kicks and ultrasounds, bring tears. So, what happened after I made the decision to avoid the planner? I've done pretty well, I must say. I think about the planner about once a day and force the thought aside. It's easier since the only date I remember for sure is Leila's angel day. I could probably calculate the other dates but it's easy to not do that. Thank God I haven't run across that planner!

I cry periodically, yes, but that's usually brief. Last night was my first really big cry. I came across some ultrasound pictures while cleaning out Chloe's room and decided to put Leila's pictures in her memory box. I can't ever touch her memory box without opening it up and looking at the photographs we took of her or touching her little blanket and outfits that she wore in the hospital. Fortunately, the girls were asleep and Dave was home. He gives really good hugs and his heart beats loudly so I just snuggled in his chest for a while and that felt lovely.

Oooh. I know I can make it through the next month and a half without falling to pieces. I'm doing SO well! If you're so inclined please feel free to send some good energy my way. I just might find a good use for it.

Friday, July 9, 2010

A Little More Oxygen

We went to the retinologist on Wednesday. This is the doctor in Cincinnati who did Chloe's cataract surgery, but who's also checking Chloe's retinas to make sure the ROP isn't continuing to do any damage to her eyes. The good news is that she looks great! He isn't seeing any further damage. Yay!

Last week we saw my favorite doctor, Chloe's pulmonalogist. I had my plan in place. Her appointment was at 2:20 but her feeding time is 2pm. It takes 30 minutes to get to the hospital, so it would be too early to feed Chloe before leaving home. I decided to arrive at her appointment 30 minutes early and feed her there. The added bonus would be that she would have a full belly for her weigh in. Hee hee hee. I was determined to get that gold star... My mistake was that I checked in before sitting down. I hardly pulled the bottle out of the diaper bag before they called her name! Dratz! My evil plan was foiled again!!!

Dr. Sobande did his usual grams/day calculation and determined that at 13lb 7oz Chloe only gained 18g per day over the past three months. It's not bad but not as good as the last time he saw her. I reminded him that there was a cataract surgery, healing, a cold or two, etc etc in there. It HAS been three months, you know. He agreed and reminded me that it's not "bad" weight gain - just not "great." Then I dropped the bomb. "Soooo, I thought I should mention that, during the last couple of weeks, Chloe has dozed off toward the end of her bottles a few times a day. Plus, she breathes quickly when doing something strenuous - like having a fit or playing hard." I held my breath as his eyebrows went up. He thanked me for telling him because many people wouldn't tell him that. The truth is that I knew I had to tell him but didn't WANT to. How did he know that?!?

The outcome is that Chloe's back on oxygen for feedings. And we're raising her O2 from 1/8 or a liter to 1/4 or a liter. No, he said, this will not slow her lung growth or development. Her lungs are still working hard. We're just giving her a little more help. Her body will burn fewer calories trying to keep her whole body oxygenated. All right. I can wrestle her canula on a few times a day. This is not a big deal.

I also noted that she spits up frequently. It's only about 2Tbsp per bottle but it's pretty consistent. We have a super hard time getting a burp out of her. I'll pat her back for like 10 minutes and nothing. Different burping positions. Nothing. 5-10 minutes later - spitup. He prescribed Zantac. I'm not sure why, but I'm scared to give it to her. I've had it for two days now and have yet to start. The weird thing is that she hasn't been spitting up like she usually does. I wonder if the added oxygen could have anything to do with it? I asked if he thought the spitup could have anything to do with her lungs. I assumed it was just a tiny bit of reflux. He agreed. I think I'll hold off on the Zantac for now, though. I hate to give her anything she doesn't really really need.