Tuesday, January 3, 2012

Goodbye Monroe, until we meet again

Our sweet, sweet Monroe passed away on January 1st. An intestinal infection took all of her energy and her tiny body was not able to overcome what was asked of it. We have never known love as we have since the moment we saw her heartbeat on the ultrasound, and then the love we have for her was multiplied so many times over from the moment we saw her and then again as we saw her feisty personality and unbelievable strength. Our love will never diminish and she will be in our hearts every day. We were so very lucky to know and love Monroe. Life will never be the same and we would never want it to be. She is the best, most beautiful baby we ever could have wished for and we will be thankful every single day for the time we had with her. We are so lucky to have the best family and friends and our newfound friends through our journey at the NICU. You have all been supportive and generous and wonderful and with you we honor her memory with love. Thank you.

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Friday, December 30, 2011

a 2 pound baby!

We officially have a 2 pound baby! Hooray! We're so excited she passed the 2 pound mark, she really is growing and has been very alert so far this morning. They have made a few changes, her CPAP is back up to 5 since she has been having some ups and downs with her oxygen saturation, but maybe she just needs a little more time at 5 to grow before going to down to 4. Basically it's just the pressure the machine uses to blow air in the make it easier for her to inflate her lungs. It's ok if she uses her energy now to grow rather than to breathe, so once she's a little bigger and stronger we know she'll need less pressure. They are also going to do an xray today just to check out that her lungs are growing and inflating as they should be. Her feedings went up just a little to 24mL/4 hours, since she is tolerating the breast milk so well.

Last night we finally got some laundry detergent with no dyes or fragrances and washed some of the preemie outfits we have for her. This pink ladybug outfit is so adorable and was a very special gift. Nurse Sara changed her outfit last night and got some cute pictures.

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This blurry yawning action photo makes me laugh. And her hands look big and long!

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Isn't she looking so different and grown up?

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We're pretty sure her happiest moments of the day are the ones when we're holding her and when she gets her little breaks from the CPAP tubes in her nose. Though I can't guarantee that they are her favorites in that order.

Wednesday, December 28, 2011

Hiccups!

Last night Monroe lost about 10 grams so she is at 1 pound, 14.3 ounces. We're hoping tonight is the night for a 20 gram weight gain! Her oxygen saturation has been a little up and down today, she's getting used to her lower CPAP level and still getting used to her stomach feedings. But, overall, she looks great and has been happy most of the day.

I held her for a couple hours this morning and we did what they call kangaroo care, I held her on my skin and they give me a bathrobe like I'm at the spa. Only I'm definitely not at the spa.

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She has been SO alert the past few days and has her eyes open for at least a few minutes each time we hold her. It's so nice to see her beautiful eyes and to get that time to interact with her. She seems to have better control over her eyes and it looks like she is making good efforts and attempts to focus on things, even though I know she can't see too much quite yet.




While I held her she had the hiccups. It's always cute when she has them and luckily they don't usually last too long.



When it was time for her to go back into her bed she was not very happy with us getting her dressed and changing her diaper. She was all about her pacifier though and even held onto it herself for a minute or so. It was really cute.

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Have I mentioned I know some of the sweetest and best knitters in the world? They are amazing friends too. I received this blanket with a square knit by many of my friends and then seamed up by Sally in Alaska. It's gorgeous and is so meaningful how many people contributed to knitting it during a very busy time of the year. Monroe, Jill and I are so lucky to have so many people who care about us and take the time to show us that they are thinking of us.

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Also got a fabulous package from Brittany with this adorable sweater and hats.

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Brittany also sent this adorable onesie, some pants, a toy and this awesome snuggle sack. Such a wonderful friend.

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Turns out the video camera doesn't take the best photos, but it's small and I'm not afraid of dropping it on her like my giant camera. So, I guess the pictures aren't the greatest, but at least I can take them while I'm holding her.

Tuesday, December 27, 2011

So close!

Monroe is 1 pound, 14.7 ounces today. We're on the countdown to 2 pounds... hopefully in the next couple of days we'll pass that milestone. There will definitely be cheering. And there may also be cake.

Yesterday Jill's mom came up to visit, and she was able to hold Monroe yesterday and this morning. She enjoyed being cuddled up with grandma, though I couldn't talk her into changing her dirty diaper. Maybe next time.

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My mom and Jill's mom helped us get a lot of cleaning and organizing done in the basement yesterday. We're getting closer to having a room in the basement where I can move all of my yarn and craft supplies to clear out Monroe's room. And then we'll get a few more things at Ikea with the money that our wonderful family has given us and Monroe's room will be near complete. Just lots of painting to be done first. Luckily my mom is a master painter.

Last night nurse Sara was back (yay! and yes, we really do cheer a little every time she works) and we gave Monroe her second bath, complete with spa style headwrap while her hair dried.

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Since her blue lights have been turned off she has been swaddled up to her heart's content. She loves being wrapped up nice and cozy tight.

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Today her feeding tube was moved back to her stomach from her duodenum and she has tolerated it really well so far. No throwing up which is possible now that the food is going straight into her stomach. She also had her CPAP turned down to 4, which she may stay at for awhile, but she is also tolerating that quite well. She'll gradually be weaned off of the CPAP, but it will probably take a couple more weeks. That will be an amazing day since she doesn't really love the CPAP.

We purchased a little handheld video camera and have taken a couple of videos of both grandma's holding her, but I haven't quite figured out how to load the videos, or really even looked at them yet to determine if they would appreciate the videos being posted on the internet. I'll keep working on that. In the meantime, we'll just send grow, Monrow, grow thoughts to our strong little girl.

Saturday, December 24, 2011

1st Christmas!

Merry Christmas! It's such an amazing and sometimes still surreal feeling to be celebrating Monroe's first Christmas in 2011. We certainly weren't expecting this! But we are so lucky our little nugget (as Jill calls her-I think she's watching too much Gold Rush on TV) is doing so well. On Thursday night and again on Christmas Eve her weights went up 20 grams (that's the first two times she has gained more than 10 grams a day!), so we are very excited to see her growing and changing. Christmas Eve was also her 2 week birthday. Can't believe it has been 2 weeks already, but at the same time it feels like she has been here even longer since we can't imagine life without her.

They make these cute little signs for her door, this was the 2 week old sign.

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Thursday Monroe's bilirubin was checked and it was just a little high so she's back under the blue lights for jaundice until Sunday or Monday. She also has to wear her sweet sunglasses again. The doctors said we could still hold her as much as we want and we have been taking full advantage.

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Christmas Eve was a very big day. It was the first time that Grandma held Monroe. It was really nice and went well. I told my mom we hadn't had time to get Christmas presents this year, so holding Monroe was her Christmas present. I think she was ok with that.

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Last night Bree made up the cutest little Christmas card with her foot prints.

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Today her feedings went up 10% to 5.5mL/hour, so that should help her gain even more weight. We wrapped a couple presents from Santa for her stocking and unwrapped them for her this morning.

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And Santa and the Elves came back to visit today and brought her a nice wooden puzzle.

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Last night we celebrated Christmas Eve at my parents' house and all of the presents were for Monroe and we wouldn't want it any other way.

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My dad ordered her a sing a long song CD that I'm sure will be played over and over and over and over in the coming years.

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My mom made her a bunch of blankets and burp cloths and got her so many cute outfits. She is going to be VERY well dressed.

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My parents also ordered the stroller/carseat combo we had on our registry, so we're very excited to see that! We have received so many generous gifts and money to put toward things for Monroe and we are so very thankful for all of our generous family and friends. We are so lucky to have so many wonderful people in our lives. We are getting closer to finishing the basement and that means closer to finishing Monroe's room. We'll have a few more furniture type things to get and some painting done. We have a little more time though, it's just so hard to be at home when all we want to do is be at the hospital with our little girl.

Thursday, December 22, 2011

visit from Santa

Yesterday Santa made a visit to the NICU. He even brought presents!
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Jill opened the presents for Monroe after work. Here's what she got. These were all donations to the NICU/PICU and it was so fun to choose her gifts a few days ago from a room overflowing with toys.
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Monroe put on her Christmas outfit last night. It's preemie size, but it's still pretty huge on her. We tried to get some pictures of her in her stocking, but they were a little challenging.
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Check out the feet on these little pjs. They are some hand me downs from the girls across the street and they are SO cute.
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Then we tucked her in under the blanket I knit her. It has been keeping her nice and warm.
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Here is our family Christmas photo. We told her the story that we didn't really expect her until Christmas 2012. But, sometimes life has other plans. We are so thankful that she is doing really well and she is in a place they are taking great care of her. And it turns out in addition to being a fabulous nurse, Sara is also a pretty darn good photographer.
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Wednesday, December 21, 2011

Bath time!

Yesterday was a good day, the transfusion really seemed to help Monroe's breathing and heart rate to not have much fluctuation. Her oxygen saturation went up and down some yesterday, but they keep telling us it's normal for a baby of her age. She would have been 29 weeks yesterday if she had stayed on the inside. I held her for awhile in the afternoon and then in the evening Jill and grandma and grandpa came to visit.

The little hats that hold the CPAP in place get SO stretched out. Her hat has been covering her eyes for a few days. We've missed seeing her eyes, but the rest of her face is pretty cute too.
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Grandma brought a little Christmas tree for Monroe's window. It's really cute with battery operated lights and all of the ornaments are little babies.
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Then when we found out the nurse Sara was back working overtime (yay!) and was going to help us with Monroe's first bath. Scary and exciting all at the same time. Lots of pictures ahead!

Here we are getting ready and getting all of our instructions.
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Calming her down after her swaddler and clothes are off.
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Into the tub she goes!
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Jill washing her little arm.
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Cutest little soapy foot ever!
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I'm not going to go quite so far as to say she liked her bath, but she tolerated it really, really well. She really loves being swaddled, so as long as we kept our hands on her she stayed fairly calm without a whole lot of crying.
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I think what took the longest was nurse Sara trying to scrub off her sticky things that hold on her monitors. They were really sticky!
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Shampoo time!
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Wide awake for drying off.
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Lotioning her up.
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She still hates her CPAP and just wanted to make sure we all are fully aware of it.
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All calm, clean and relaxed after bathtime. With her sunshine toy.
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One of my new favorite pictures.
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Another Monroe's hand in grandpa's hand picture. Is she growing?
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Our favorite part of bath time was her new CPAP holding hat that isn't stretched out and we can actually see her sweet little eyes. Jill is so excited to find out what color they will be. We'll have to wait awhile though.
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Goodnight sweet, sweet Monroe. You are loved by so many. Can't wait to see her tomorrow!

Thanks mom for taking all of the pictures! You got some good ones. :)
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