Waiting for the Kids

Waiting for the "kids" to come on Halloween.

The Last 12 Weeks

This is another one of those posts that is mostly for me, to remember what the last 12 weeks have been like. So, here's a bit of what our schedule has been like for 12 weeks.

Abby left, Katie right. I just love Katie's expression.

The first thing to understand is that, especially when they were smaller, there were only certain times of the day when we could get in with the girls and touch them in the beginning, or hold them and take care of them as they got older. The girls do their growing when they sleep, so they want them to sleep as much as possible and holding them or even touching them pulls them out of that excellent sleep. So, we would always try to go up during "cares" that happens every 3 hours with Katie's cares being an hour behind Abby's cares. Cares involves taking their temperature, changing their diapers, measuring their bellies, and then feeding them.

So, my day lately really starts around 3:30am. My alarm goes off telling me it's time to get up and pump.  And let me tell you from experience it's so much easier to get up for a crying hungry baby than to get up for a pump. But pumping no more than 4-5 hours apart is essential for keeping up my milk supply. So, the alarm goes off at 3:30 and I usually manage to hit my phone three or four times and actually get up around 4:00am. I've also been known to completely sleep through the alarm, so I regularly change the sound my alarm makes to keep me from sleeping through it! Sometimes Shawn will turn over and tell me to get up and I usually say something grumpy like "SLEEP!" and hit my phone again to snooze the alarm.  So, at 4:00 I stumble to the living room and sit on the couch for 20 minutes while trying to stay awake enough to pump but not enough to keep me awake. I'll usually watch something online or play solitaire. I have to stay sitting up for the pump to work, so falling back asleep isn't really an option. Then I stumble back to bed until about 8:00 when Eliza wakes up.

My Mom has been staying with us and she usually gets Eliza out of bed and changes her diaper so I can sleep in for just a little bit longer. In the morning I get up, pump again, eat breakfast, play a little with Eliza and then it's time to go to the hospital for 10:00am cares. Shawn always calls the hospital on his way in to work, so he'll text me who the nurse is that morning and how the girls did over night.

I stay at the hospital for around 3 hours doing cares with both girls and holding them or feeding them, and then pumping again at the hospital before I grab a chocolate milk from the parent lounge and head home. Abby is just ready to start her next cares when it's time for me to head home.

In the afternoon I'll eat lunch and pump, and if I'm lucky take a quick nap or shower before Eliza gets up from her nap. Then I'll play with Eliza or watch Sesame Street with her and then it's time to pump AGAIN! Then a little dinner, and Shawn and I head back to the hospital for 7:00pm cares. At night Shawn and I will each take care of one of the girls so it's a bit of a quicker process and we head home by about 9:00pm.  The hospital is 30 minutes away, so that's two hours of every day spent in the car to and from the hospital. I've definitely caught up on my podcasts and have even found some new ones. I might even miss that time once I no longer have that commute, but really I'm looking forward to having two more hours of every day to spend with Eliza and the twins. At 10:30pm I do one last pump for an hour, called a "power pump." It's when I catch up on TV. Thursday night is my favorite right now because Grey's Anatomy, Parenthood, and Biggest Loser are all on the Tivo when I get home.

Eliza playing at the hospital.

On weekends Shawn and I split up who goes to the hospital and who stays home with Eliza.  Eliza LOVES going to the hospital, but because of the winter/RSV/cold and flu season kids are not allowed in the NICU so while she has gotten to meet them twice, she can no longer see her sisters. But she still loves going to the hospital and will just hang out in the lobby. There's a cute statue of a family, and Eliza loves to climb on the statue and give the little girl a hug. On Sundays a neighbor or Shawn's brother and sister-in-law will take care of Eliza so we can go up for 1:00pm cares. Then we spend the evening with Eliza.  We think it's important to have one night a week we are together as a family and are both there to put Eliza to bed. It's also nice to have one night that Shawn and I get to spend time together after Eliza's in bed.

So, that's been my life for the last 12 weeks. I know once we bring the twins home life will be hard, but the last 12 weeks have been hard! I'm looking forward to not saying goodbye to Eliza twice a day, and to not feeling like I'm choosing between spending time with Eliza and spending time with the twins. I know to a degree that it will still be like that, but I can't wait to have all three of my girls together. I'm looking forward to getting up with the twins instead of to an alarm clock and a pump. I'm looking forward to making the decisions about the girls and not asking a nurse if it's OK if I pick up my daughter.

Hoping for Boring

I read this quote on a blog today and loved it:

"A broken heart is the very instrument we use to understand how deep we love." -C Jane Kendrick

So I shared it on Facebook, which apparently caused quite the stir and concern. Nothing specifically happened to the girls to make me share that quote, but it is quite an accurate description of how I have felt lately. My heart has broken for my girls. I wish it was me getting poked and prodded and sitting alone in a hospital bed instead of my twins. I would gladly take on all of their procedures to keep their little bodies from suffering, but it was not to be.  

Every day new things happen with the girls, but not every new thing is really worthy of a blog post, or I'm afraid this would be rather boring. So, I'll just update you with where we are now. 

Abigail is doing GREAT! It's almost easy to just not mention her because she is doing so well and Kaitlin has so many problems. But I don't want her to look back on this when she's a teenager and wonder why she was never mentioned. Abigail now weighs over 2 lbs! She has quite the talent for wiggling out of her diaper and for pulling out her OG tube (the tube that goes to her belly, where all of her feedings go). Her heart rate does tend to drop and then go really high, which is what it did every time we monitored her while I was pregnant. It's just something they're still watching and have adjusted her caffeine dosage to try to help. (Did you know that preemies regularly get caffeine?) She's breathing pretty well, so they're just leaving her on her current ventilator. (It's not a ventilator, but I'm not sure exactly what it is, so I'll call it a ventilator for now.) She's on full feedings and getting an extra 24 calories per feeding. She got her PICC line out over the weekend as well.

Kaitlin.  Kaitlin is another story. I'd really like something to resolve for Kaitlin so her body wasn't having to fight on quite so many fronts. She still has her left chest tube that was put in because of air escaping the lung. But it hasn't leaked in a few days, so the doctors are hoping to pull it out soon. But because last time they took it out it leaked immediately they want to be cautious and give the lung enough time to really heal completely. But she's off of the muscle relaxants, which means she can move a little bit and it's so good to see her move! Because of all of the medications and not being able to move she has a lot of edema. (A medical term for bloated or swollen.) It's been hard to watch my little 2 lb baby gain so much weight to the point where her arms and legs were swollen and her features were hard to distinguish. But since she's been able to move a bit the swelling has already gone down around her arms and feet.  I can't wait until she looks like my little baby again, more like Abigail. BUT now there's a new problem, it appears she has water outside her lungs now. They used a needle to get some out last night, almost 3 ounces, but it wasn't getting better, so they had to put in ANOTHER chest tube on the right side to drain that fluid. Oh Kaitlin. 

And on the home front Eliza appears to have a cold. She was up much of the night last night, has a runny nose, and is just not my sweet Eliza. It's interesting how these are the symptoms of a cold in a toddler who can't tell you she's sick. I haven't wanted to take cold germs up to the hospital just in case, so I stayed home today. It was hard to be home and not visit with my girls. But Eliza needs me too. I feel pulled in so many directions. And now I'm starting to feel something too.  Not sure if it's a cold or just my seasonal allergies, but whatever it is worries me. Shawn is with the girls tonight and I'm trying to focus on resting and healing myself. I can't wait until he gets home so I can hear the latest news. We keep praying for "boring" as the NICU doctors say. I'd love a boring few days for Kaitlin so her body can just heal. They are 29 weeks gestational age today! Please keep praying for my girls, and send chocolate so I can keep going myself. 

Hospital Withdrawals

You know you've spent too much time in the hospital when:

• You are surprised by carpet under your feet and not cold linoleum every time you get out of bed.
• You feel the need to report every bodily function to someone
• You find yourself dialing "3663" on your phone to order food but no one ever answers
• You regularly look for the button on the bed that will help you sit up.
• You still wake up every 2 hours expecting the nurse to come take your vital signs

Even though I'm going through withdrawals from the amazing Cream Cheese Cookies I had at every meal, I'm so glad to be home.  And Eliza tells me every day "Glad you are home Momma!" We can't wait until we can bring Abigail and Kaitlin home with us too. 

Eliza playing in the lockers in the Family Room at the NICU

Kaitlin had her right chest tube removed today! The left chest tube had no "bubbles" for 18 hours and then had some between 6 and 7am, but the latest X-ray at 11:00am didn't show any air pockets. We're feeling much more optimistic than we were on Saturday. Thank you thank you thank you for all of your prayers and fasting and thoughts and meditations for our Kaitlin, we definitely feel them and feel that Kaitlin is making great improvement already. We just need the left lung to heal now!

Abigail is doing GREAT! I got to hold her for an hour last night skin to skin! She was pretty fussy until they put her on my chest, then she calmed right down and just wanted to look around. I think she didn't want to miss anything, she seemed to be struggling to stay awake. After about 30 minutes she fell asleep and was the most peaceful little thing. Holding her almost feels like holding a beanie baby or small stuffed animal on your chest, just so little and light. One of the nurses also put a purple bow in her hair!

Eliza has now seen the girls twice! She loves her baby sisters already and is very interested in touching them when we visit. She loves visiting the hospital even when we don't take her into the NICU. She played at a neighbor's house yesterday and was driving a little car they have saying "I'm driving to the hospital!" She's incredibly patient and compassionate. If I wince in pain she will come right over, pat my arm and say "It's OK Momma!" The other day I told her my belly hurt so she leaned over, kissed my belly and said "Feel better Momma!"