Care Conference Update from Mandy

Ben told me I needed to get on here and blog because he said that I would add the feelings part from yesterday's care conference - he said he had the informational part covered! Wow. First off, thanks so much for praying for our little girl. I am so amazed by God's beautiful work every time I look at our precious baby girl take every breath. Wow, life is so fragile. She's so beautiful and I still am in shock that she's here already! Yesterday was an emotional day for me as we met with the doctors and social worker. Ellie is doing an amazing job at this whole life thing, and we've had a great 5 days! Wahoo! However, they did say that she is susceptible to infections (this is the part where she might have some rougher days) and that since her digestive track/organs aren't fully developed yet, the whole feeding thing will be a very SLOW process. I'm already praying for comfort and peace on that first rough day. I know it's going to be hard. Please know that we feel very supported by all the staff here. They are taking extra precautions to make sure that we are taking care of ourselves! Please pray for more discipline in taking some time getting some rest. Oh, it's just SO hard to pull myself away from that room. Ben and I are changing her diaper, checking temps and even last night late we got to hold our little girl in a kangaroo hold (skin to skin) for an hour! I pretty much cried the entire time, but oh, what a great moment that was to feel my little girl's breath on my chest and to have her hand brush up against my skin. She slept and also had her eyes open for awhile. She even lifted her head up to look at me...oh, seriously...just amazing. This whole mom and baby bond thing is so special! I wouldn't trade it for the world! Ok, yeah, back to the care conference - so she's also developed a heart murmur which they are watching closely. They also increased her feedings to 6 hours/day instead of 12 - still at 2.5 ml of my milk. One of the things they also talked about was giving us perspective of what it'll be like after Ellie goes home. (I need to start a countdown!) Ben and I both kind of thought that hey, we'll need to get through our due date and then life will be just like every other full term baby right? Nope...Ellie will probably be around 5 pounds when she comes home and she will also need some help nutritionally to play catch up. Even if I breastfeed, it will need to also be supplemented with bottle feedings of formula - just to give some extra boost - for the next 6 months. They also asked about plans for day care after Ellie's home. They were concerned because she'll be going home around flu/cold season. We told them that we had a wonderful friend, Lori, who would be watching our little Ellie, and that she has a 1 year old herself. They were all relieved and said that was a great option as a day care center with lots of germs wouldn't be ideal for our little Ellie. Yet, another plan that God has fulfilled - we were already planning on having Lori watch Ellie and well, now that's just even more confirmed because that's what her health will need at that point too. She'll be at high risk of infections up until at least a year. Talking to the Social worker was the most difficult thing I've had to do...she asked about school, she asked about support from friends and family, insurance stuff, and she also talked about post-partum depression warning signs, especially for NICU moms. She also talked a lot about how we as parents are just as much part of the professional medical staff as they are...that they need us to be here for Ellie to help her grow, love on her and develop. They have a careline fund established for NICU moms and dads and we found out that through that we're going to get one meal per day to eat at the employee dining center (nope, it's not as fantastic as our dear Kramer that we miss so much!); $30 gas voucher/week for Ben as he travels back and forth from Manhattan; and they've also provided the first 20 days rent at the Ronald McDonald House. Seriously, every thing we talked about made me cry. They said this foundation was established because it's so hard for parents to be able to pay for the extra stuff. Oh the blessings of how God is truly taking care of us. Ben and I are very grateful and can't wait until it's our turn to pay it forward. So, as we're leaving the care conference, I go to the restroom before I'm headed back to the pump room and all day, I had seen mom's who were bringing their babies back to the NICU for their check ups (this is also something that we'll do after we go home - bring her back to SV to have her developmental check ups). Anyways, I totally did a double take and saw one of my friends (Katie Patterson, now Ingels) who graduated with me in Ag Comm from K-State. I started crying and she asked me what I was doing here. I asked her the same. She said, well, this was my home for the past 3 months...and inbetween tears I said, well, this is going to be my home for the next 3 months. She had her little boy in her arms - he was born I think around 24 weeks and weighed a pound when he was born - and now, he's 5 months and weighs 8 pounds. She looked at me and was like, here, you need to hold him. It's going to be ok, I know exactly how you feel Mandy! Again, what a small world and shock that I'm reconnecting now with a fellow college graduate who has gone through it. How cool - I can't wait to catch up on life with her! So I guess another proud moment for Ellie was last night they weighed her (they weigh her every night at 8 pm) and she's up to 2 pounds 5 ounces! Wahoo! I'm not sure what Ben still has to blog about, but well, that's another update. Oh, another cool thing is that Dr.Duff will be her pediatrician when we return to Manhattan and they've already been communicating Ellie's condition with him. He's already getting weekly reports (which now we know is just one, but hey) We were impressed that he's already involved even though she's not coming home for a while. They also said that Dr.Duff works with a lot of their patients and is very comfortable taking care of these little, little ones. Well, it's getting early...and we have yet another big day full of vibrant life to witness with our little girl. YAY! Again, thanks for praying and please continue to pray for our family. Please pray for Ben now as he will be heading back to Manhattan next week to figure out a schedule that will work for his classes. Please pray for some good options for him to be able to spend some good time with his two most precious girls in Topeka. My mom is coming down to stay with me at the Ronald McDonald house while Ben is gone and I am very grateful that she can come be with me. Thanks to all those awesome people at her work who are letting her be the very special grandma and mom that she needs to be right now! Until next time's ramblings... Love you all very much, Team Gramkow - Ben, Mandy and Ellie Gramkow (oh, it's so fun to see that!)