spoiled by Grandmas

8/13

Today I weighed  448 grams or 15.5 oz... almost a pound!!!

What a day! Mom and Dad made a trip to Des Moines to watch Blake show at the State Fair so I got to spend the day with both of my Grandmas :) It was a pretty quiet day around here, I had to get another IV, this one in my arm where I can get blood transfusions, I had more 5cc of blood today to replace the blood I'm having drawn every two hours for labs. Other than that, my sugars have been on the high side so I'm on an insulin drip, which has been helping and the doctors are adjusting my other fluids so that I can be off of the insulin soon. I am also up to eating 6cc every 4 hours and handling it very well. The most exciting part of the day for my Grandmas was getting to pick out my new bedding, I am on a purple blanket now, with a little head cushion so that I maybe wont develop a flat spot on my head. More tomorrow! XOXO

My visitors today were:
Grandma Hulsebus
Grandma Benjamin
Ceara Kirchner
<3

day 11 pictures

Day of life 11

Day of life 11

Day of life 11

My sweet little face <3 day 11... new tape today, my nose is playing hide and seek :)

These pictures don't do me much justice... no flash photos for now so my skin looks darker than it is. I'm actually looking more and more like a tiny pink baby everyday

Weekend!

Day of life 9

Day of life 9

8/11

Today is my 10th day of life and my weight is 430 grams or 15 oz... I am growing!

The doctors upped my feedings today to 7cc every 6 hours for a total of 28 cc/day. Might not

I've had a busy weekend already! Saturday I had 21 visitors :) I got another dose of surfactant. I handled it much better than the last time, I didn't get nearly as mad at the respiratory therepist. For the most part I've been a very good girl and its been an uneventful weekend for me with few changes by the doctors.

Day of life 10... the bandage on my leg covers my new PICC line, it keeps me from snagging it on the blanket and pulling on it

Day of life 10 with Mommy & Daddy's wedding rings :)

My  visitors today were:
Ashley & Andy Hardin
Aunt Lyndsi & Colin
Matt Schwan & Kristin Pesko
Gavin, Katie, & Owen Burgess
Kate & Seth Essing
Uncle Mark & Aunt Leslie
Aunt Mari, Uncle Jurgen and my cousins Blake & Zane
Uncle Luke, Aunt January, and my cousins Kade & Carter


8/12

Today is my 11th day of life and my weight is 433 grams... Daddy says I'm going to have to grow faster than 3 grams/day but growth is growth darn it!

This morning I had my breathing and feeding tubes re-taped... I was not a very happy camper. I made my squished up little frowny face and held my breath. The un-taping was worse than the re-taping, I had had the same tape on my nose for 10 days and it really did not want to come off! Eventually I decided to cooperate and let them hurry up and finish taping me up. Mommy and Daddy got a brief glimpse at my nose in between the old tape and new tape and Mom says I'm going to look just like my Daddy.

Dr. McElroy is very happy with my progress and says he will continue to do very little to me until I am either bigger, and therefor better able to handle the steroids that I will need to aid in my lung development or my condition worsens and I need to the steroids sooner. At the rate I am going it is better to wait until I am a little bigger to administer the steroids as the effects on my tiny body would be more unpredictable right now. My lung scans continue to look satisfactory.

My visitors today were:
Matt Schwan & Kristin Pesko
Grandma and Grandpa Benjamin
Grandma and Grandpa Hulsebus
Great Grandma Jean

8/10

Much better day than yesterday, but a very busy one! I am back off of the Nitric Oxide, yay! I've been oxygenating all day like a good girl and they've been able to wean my vent settings down as well as my oxygen level! I am now down from 74% this morning to 54% this evening :) The air around us is about 21% oxygen so eventually my goal will be to get down to there but because my lungs are so tiny and have less capacity to oxygenate my blood, I need supplimental O2 for now. Dr. McElroy is comfortable with my O2 level being anywhere from 40%-70% right now, but the lower the better so I am working on keeping it low. My blood gasses this afternoon have been great so I must be getting what I need.

I had my PICC line put in today to replace my umbilical IV line. Mommy and Daddy had to leave for 45 minutes while the nurse practitioner and pediatric resident put the line in. It was supposed to go in a blood vessel in my foot, through my leg, and end somewhere near my belly... but I was too tiny! So they put it in the larger blood vessel at my knee <3 Later Jessica, my pediatric resident came back and removed one of the lines from my umbilical cord. They left the other one in so that I can still have my blood drawn from it rather than heel sticks for my labs... Mommy and Daddy are thrilled that it will be a while before I have to have my heels poked twice/day!

No peaking at my eyes just yet but everyday I get a little closer and as long as everything else is going well Mommy and Daddy wont mind waiting just a little while longer :)

Also, Mommy says the pictures don't do me justice! I look so much better in person!!

My visitors today were:
Lori and Luis Galle
Ashley Hocker
Travis Allen
Grandma Hulsebus
Great Grandma Jean
Aunt Mari
Aunt Lyndsi & Colin

pictures from 8/9 - 8/10

Day of life 8

Day of life 8

Baptism

Dirty Diaper :)

Day of life 9

Day of life 9

Mommy putting some lotion on my dry skin

More lotion... I'm not sure I like this stuff!

8/9

8/9 continued...

My visitors today were:
Grandma Benjamin
Aunt Leslie
Aunt Tara

8/10 - Reagan's day of life 9

Today I weighed 397 grams

I lost a little weight yesterday, but maybe it is becuase I finally learned to poop! Mommy got to change 2 pretty yucky diapers yesterday and didn't mind a bit :) yesterday afternoon and last night were not the best that I've had so far... Dr. McElroy said we have started the preemie dance, Mom and Dad can expect me to take 2 steps forward and 1 step back for a while now, comes with the territory of being tiny. My oxygen needs were high yesterday so I had more surfactant, my blood gasses were still not great so Dr. Kline ordered that I get the Nitric Oxide back for a while to hopefully balance out my O2 needs.

I also got baptised yesterday! Fr. Kaska came to visit and did an abreviated baptism. When I get out of here, we'll complete the ceremony in church and have a big celebration <3

The doctors will do their rounds at 9:30-10 this morning and Mommy will post a little more then.

Long update :)

My awesome nurses made me scrapbook pages, they can decorate my room now, and go into a scrapbook for me later :)

Maria made this one for me on my second day of life, those are my tiny little footprints!

Lauren knew I am a cowgirl without anyone telling her! She suprised Mommy and Daddy and had a little photo shoot while they were out to lunch, then decorated this for my room and I <3 it!

8/9 - Reagan's day of life 8

Today I weighed: 428 grams or 15 oz, I’m going to be a whopper! J

What a day this has turned out to be already!

Well I’m a cowgirl… and maybe a bit of a rockstar!?! My test results are in and so far I have no bleeds in my brain (surprising as my delivery was somewhat traumatic on my little body). AND my echocardiogram showed that the artery in my heart that would require me having rounds of meds with some rough side effects or even open heart surgery is closed! The doctors couldn’t be happier with what they saw on the tests. I have one area in my brain that they will keep a close eye on as I grow, but for now, everything looks great. I’m not out of the woods just yet, my brain could still bleed at any point, and that artery could reopen as I grow, but for now everything is alright and I am going to fight like a girl to keep it that way!

In other news, my nurse Carroll told Mommy to keep watching my eyes, as today might just be the day that I decide to open them up and let the world see them! (don’t worry, the first thing Mom did was make sure the camera had plenty of battery for an afternoon photo shoot) I won't be able to see anything for quite a while yet, and when I can see it will mostly be shadows and lights for a while but everyone is excited to see what my eyes will look like open!

I’m also up on my feedings, the doctors started me at ½ a CC of breast milk every 12 hours on my second day of life. By today I am up to 5 CC every 6 hours! Now I just need to poop J Mom says she never knew she would get so excited about anyone pooping, but suddenly it seems like a pretty big deal!

So far I've been getting all of my fluids through a line that the doctors placed in my umbilical cord when I was born. Today I'll get my next phase IV line, it will go in through my arm and the end of the line will be close to my heart. They'll leave my UV line in today to make sure I'll tolerate this new line but if all goes well, tomorrow I'm on to my new bigger girl line :) the yucky news is that once I am on the new IV line the nurses will have to stick my heels to get my blood for my daily tests but at least they will only have to do that twice a day (as long as I cooperate and keep my blood gasses where they need to be) Mom and Dad are not looking forward to the heel sticks, but I am much tougher than they give me credit for.

Grandpa Benjamin says Mom needs to take a picture of me every day from the same angle so every one can see my progress as I get bigger so Mom will start that the next time they remove my plastic wrap to do my cares.

Now for the sappy stuff from my mom...

So far, I've given nothing but Reagan updates and everyone has said "wonderful, but how are you and Matt holding up" So here is a little insight into how we are choosing to look at things.

Nothing, and I mean NOTHING can or will prepare you for something like this. Any parent will tell you that your entire world changes the second you lay eyes on your newborn baby, and Matt and I are no different in that respect. The pain of delivery is long forgotten when you see her, anything and everything you ever thought you wanted seems obsolete, and you are so proud of this adorable little person. It really puts everything into perspective, suddenly nothing matters except the well being of your child and you find yourself putting their needs before your own without even realizing it.

Eventually every parent also has to learn and accept that there are certain things that you cannot protect your child from. I think most parents learn this when their child gets his or her first round of shots; you grit your teeth, and hold the m tight, holding your breath, in pain yourself as the nurse slowly braces herself and gives your little one their first shot. You wait, you know it’s coming. You knew that this needed to be done, you knew it would be hard, you didn’t know it would be that hard. Holding back your own tears when finally, that cry, or scream lets you know it’s over, you can hold and rock and soothe your little one, knowing it’s over, knowing that now you can hold them tight and while you can’t take the hurt away, you can love them and try to kiss it and make it better. Then they learn to walk and suddenly your home has never felt like such a dangerous place, they’re into everything, pulling things down on themselves, falling, scraping their knees, there is no stopping it now, and no way to protect them from their newfound freedom. At first, you fall each time they fall, desperately wanting to catch them each time so that they don’t have to feel the pain that comes with the fall. Slowly you learn to let them fall, let them get that boo boo, and let them learn. Then comes the hardest part, watching your child learn to fail… getting those training wheels off, mom knows it, dad knows it, he’s going to fall… it’s going to hurt and he’s going to cry but if he’s ever going to learn, you’re going to have to let him fail so that he can learn from his mistakes and try, try, try again until he gets it right.

Matt and I have been thrown into a steep learning curve here… we are going through all of these at once, and all in the first week of her life. Obviously Reagan is walking or riding a bike, but we’re learning to that she has to fight her fight and as much as we would like to, we can’t make it much better for her. We didn’t get to protect our Reagan for nearly as long as we should have, or would have liked to. We’re learning now that all we can do right now is be here for her… like that first round of shots… we know that it is hard and it probably hurts, but we also know that it has to be done. So we sit by her when she gets the surfactant that she hates, we hold back the tears, and though she can’t yet cry, we watch her furrow her little brow, kick her legs, and we listen as the heart rate monitor tells us that she is not happy about whats going on right now. We talk to her, tell her we’re here, or hold her tiny hand, but we can’t take the pain away. Then as her heart rate returns to normal, and she begins to relax, we feel it; relief, that selfish relief, knowing that it’s over. It was hard for us to watch but harder for her to have to endure so we hold it together and try to soothe her if we can.

And I won’t try to be tough here, it is the hardest thing we will ever do, to watch our baby girl fight so hard, day and night, knowing that no matter how hard we try, how much we want for there to be anything we can do to make this easier for her, we can’t. And so we don’t… we pull together, we talk to her and talk to her doctors and her nurses and we try to understand what she is going through, what obstacles are ahead of her, we try to anticipate every challenge she will face. Just like anticipating that stumble and fall from wobbly, clumsy, newly upright legs. And we want more than anything to be able to protect her from those challenges like you try to protect your one year old from falling and scaping his knee… but one day you learn; you can’t catch him every time he falls. We can’t protect her from the challenges she will have to face. But we will be here when she faces them to talk to her and try to soothe her and make it just a little bit easier when she does.

And now we wait to see what she can do. Like watching him get the training wheels off. We know that she will have a bad day eventually, like you know that he will fall eventually. And we know that we can’t stop it, that if she is going to get better, it will have to happen, and when it does, we will be here to try to make it just a little bit better.

And in the meantime we count our blessings that we have such wonderful support, from eachother, from our families, from our friends, and from the community. People that we can rely on for support and to just be there and listen when she has, and so in turn, we have a bad day.

This is Reagan’s fight. This is Reagan’s story. We are so thankful each and every day that we have her. Every single day that there is more of the story to tell, she is giving us a very precious gift that we will forever cherish. Her life is still an hour by hour, day by day, up hill climb, but she will never be alone in it.

I don’t know if I believe that everything happens for a reason but I do believe that you can find good in every story and I know that we believe in Reagan and we believe that this is just her beginning.  So I’ll end this post here by saying I hope this does not come across as negative, I mean this in no way to evoke sadness or pity, this is just my explanation of the helplessness we, and all parents face at points in their children's early years. I mean this to inspire courage in every one who reads it. If tiny little Reagan can carry on, which one of us cannot?

Every day Reagan gets a little stronger and so do we, and that makes it easy to be strong and to be brave. Being strong, brave, and loving are the only things we can do for Reagan right now, and so we fully intend to be each of those things to the absolute best of our ability. 

When the day finally comes, and we get to hold Reagan, pick her up and cuddle her and kiss her little face and feel like we finally get to love some of the pain away... look out WORLD because we will be on cloud 9!

This is just the beginning of Reagan’s story… 

“Beginnings are scary. Endings are usually sad, but it's what's in the middle that counts. So, when you find yourself at the beginning, just give hope a chance to float up. And it will.” ~Hope Floats

XOXO,

Matt & Emily