Our Tiny Angel

Yesterday at 9:05AM Reagan Jean Hulsebus got her wings. She was beautiful and perfect but when she got sick with an infection it was just too much for her tiny body to overcome. Somewhere around 8:30AM Reagan's vitals became unstable and despite the doctors' amazing efforts and Reagan's fighting spirit, Reagan's tiny heart had endured too much and she could not be revived.

We spent the day quietly with our baby girl. Matt and I got to hold her and kiss her and share her with our families. We gave her a bath and swaddled her in her favorite pink blankie. We left the hospital around 4PM and we took our baby girl home where we each spent some time quietly rocking her in her nursery. We told her all about her family, and the plans we had for her, and then we asked her to give Rhett & Jonathan each a hug for us and to let her Great Grandma Nedra & Great Great Grandma Stella take care of her until we get to see her again. To let all of her Grandparents up in heaven spoil her for us and to look in on us from time to time. We thanked her for fighting, she did such a great job, we told her it was okay that she had to leave and that we were happy for her and that she wouldn't have to suffer anymore. Then we asked her to help us out just a little, she had already been so strong and brave. We asked that when she meets God, to ask him to help us understand why she had to go so soon.

And then it was time to say goodbye and that was the hardest part of all...

Reagan Jean will be layed to rest on Saturday in the quiet country cemetary at Primrose. From 12:30-1:30 PM we will meet family and friends at the funeral home in Donnellson. Father Hoffman will preside over a service for Reagan at 1:30. Our family will then go to Primrose to say our last goodbye.

We want to take this time to thank all of the Doctor's, Residents, Fellows, Nurses, & the entire Care Team at the University of Iowa NICU. We sincerely appreciate all of your efforts to help our tiny baby girl. We know how hard you worked, and though we had planned for a much different outcome, as I think all of you did until 8:30 Thursday morning, we will forever be indebitted to you all for the precious gift you gave us and we know that you did everything in your power to save Reagan. Thank you, for giving us 22 days with our little angel! Without each and every one of you we would have undoubtedly known the pain of loosing a child all too soon, but we would never have known the joy of watching her grow, changing her diaper, holding her hand, giving her kisses, and watching her little facial expressions, & her tiny little arms and legs squirming. You gave us the gift of joy and the gift of parenthood where most other hospitals in Iowa would have just let us hold her in the delivery room until she was gone. She showed us a brand new kind of love that we didn't even know that we were capable of. She taught us to love her, to love eachother more deeply, and to take care of one another. There are not enough words to express our gratitude to each of you for caring for her, and for your patience, and compassion for us. We will always consider each of you a part of our extended family.

Love always,
Matt & Emily Hulsebus

3 weeks old

Well today wasn't a very fun Birthday for Miss Reagan. She is stabilizing nicely now but this Momma is too tired to elaborate much tonight. I will update more on her tough day later. For now know that Reagan is still working hard to get back on track after another day of the "preemie dance" that Dr. McElroy told us to expect from day 1. Today was a step back after a few steps forward but we knew that there would be bad days amongst the good. Tonight have a look back on the progress Reagan has made so far.

 

Week 1- August 2, 2012. Reagan's day of life 1

(her b-day actually counted as day of life 0)

Week 1- August 8, 2012. Reagan's day of life 7.

Week 2- August 15, 2012. Reagan's day of life 14.

Week 3- August 21, 2012. Reagan's Day of life 20

(hard to tell that her coloring is actually better here in the bad light, but look how much bigger she looks!)

2 quiet days :)

August 20 - Day of life 19:

Today I weighed: 523 grams or 1 pound 2.4 oz

Pretty uneventful day for me in the NICU. I'm very happy with where Kim put my breathing tube a couple days ago and I've been doing a great job oxygenating. My oxygen needs have been back down around 55% and Dr. Colaizy says that as long as I continue to grow and my oxygen needs stay under 70% they will do as little to me as possible and let me grow! I've been enjoying my sleep too! Mommy thinks I'm still a little worn out from fighting my infection as I've not been quiet as active as I had been before all of the antibiotics. I had my first girls night tonight when Katie and Katelin came to visit... sounds like Mommy and her friends are going to start playing dress up with me as soon as they can and will probably never stop, so I guess you can count on lots of (embarrassing) pictures of me in ruffles, tutus, bows, and more :)

My visitors today were:

Aunt Joann

Katie Burgess

Katelin Essing

my sweet sleepy face day 19

Day of life 19

August 21 - Day of life 20

Today I weighed 573 grams or 1 pound 4.2 oz... growing like its my job!

Another quiet day for me! Dr. Colaizy upped my feedings again! I'm now getting 2.3cc of Mom's fortified milk every hour... makes for some nice diapers :) But it must be working because I am now consistently growing and it is true weight. I had my second experience with tummy time today and I decided I actually like it! May have something to do with my breating tube being in the correct spot again :) Daddy and I have been hanging out this afternoon, I am really impressing him with the amount I've been able to grow in a 24 hour period... 2 oz might not sound like a lot but when you consider that I grew 50 grams last night, and I only weigh 573 grams, its almost 10% of my bodyweight! ...I must have been holding back until they weighed me last night because first thing this morning I made a huge mess of my diaper... and my bed :)

I've got some lingering edema around my head and neck (edema just means fluid swelling). It is likely just from my infection and the swelling will reduce with time. Other than that, the dentistry department will come today and fit me for my first palate plate. It is just a tiny retainer that my breating tube and feeding tube will sit into. That way my palate doesn't become misshapen as a result of the constant pressure from my breathing and feeding tubes.

Lastly my nurse, Jessica, changed my bedding today after my big morning diaper... I am now sleeping on little pink piggies and I have my own little comfort gel pillow pedistal to sleep on :)

Until tomorrow xoxo,

Reagan Jean

Holding Daddy's hand on day 20

Sleepy drama queen

(ignore the flakeyness of my skin, its mostly residue from the lotion I wear to keep my skin from drying out, and I'm not quite big enough for a sponge bath just yet)

Tummy time! day 20. Now that I am stable, the nurses will start to put me into different positions. This will help with my head shape, digestion, and encourrage lung inflation depending upon which position they put me in

Day 20 next to Daddy's hand... I'm getting bigger! The swelling around my neck is edema or fluid swelling as a result of my infections. It will go away soon enough :)

Hair!

So Reagan gets to spend some time on her side today, just to change up positions for a while, and when the nurse turned on the light, I noticed something I hadn't seen before...

 I have hair! (who knew?)

It looks darker in the pictures, Mom and Dad think its going to be blonde!

Lots of hair for such a little lady :)

Mom is getting very excited thinking of all of the bows and (what Daddy calls ridiculous) flower headbands she's going to put on me someday :)

Friday, Saturday, and Sunday... Mom's been slacking :)

These two are late :)

 day of life 12

day of life 13

 8/17

Today I weighed: 486 grams or 1 pound 1.1 oz

Visitors today:

Grandma Hulsebus

Aunt Tara

I had a pretty good day today. I had a platelet transfusion, and my feeding went up again, but other than that, it was a pretty quiet day with my Grandma Hulsebus! The doctors identified the infection that I have and we are treating it so we should see some response to the antibiotics in 24-48 hours. I will be on two types of antibiotics for 7-14 days. I also got my UAC line out (the line in my umbilical cord where I was having my blood drawn for all of my labs... this means now for labs I will have to have heel sticks :( They poke my tiny foot with a super tiny lance and squeeze until they get enough blood to test for what they need to. I also had to have blood drawn from one of my tiny veins tonight for a blood culture. They will take my blood and test for any lingering bacteria or infections that we haven't identified yet. That was no fun... I had to be poked 5 times before we found a vein large enough to thread, that would produce enough blood (1cc) for the culture. I tolerated it better than Mommy (she cried because I made my little sad face and was trying to cry) but she held my hand and waited for them to finish up... I think I still got over it faster than she did :)

 8/18

Today I weighed: 494 grams or 1 pound 1.4 oz

Visitors today:

Grandma & Grandpa Benjamin

Mark, Leslie, Lauren, & Grace Hulsebus

Bill & Joyce Meirotto

Ryan Nunez

Overall, I was very stable today. My oxygen needs were a little higher than we would like to see (70's most of the day) but with a few vent changes, and some TLC from Daddy, Mommy, and Myrna I had a pretty quiet day. The antibiotics seem to be doing a nice job of attacking the infections in my blood and so far my last blood culture has not grown anything. Meaning, the antibiotics are starting to take effect :)

day of life 17... Momma I'll hold your ring for you :)

My tiny hand in Mommy's

Grandpa Benjamin helping Myrna change my plastic wrap :)

Grandma & Grandpa Benjamin showed up with this! What the picture doesn't show is how HUGE this gift basket from everyone at Lee County Bank and Trust is!! Cannot thank you all enough, my Grandma Benjamin has been with the bank over 15 years so most of you have watched my Mom grow up, listened to tons of "Emily stories" (only good ones I'm sure :) and now will be able to watch me get  big and strong. Mom, Dad, and I are extremely honored by your generosity! Thank you all so much, for the gift basket, gift cards, and all of your thoughts and prayers.

EVERYONE in the community has been so supportive, and so generous with cards, flowers, gift baskets, gift cards, etc. We simply cannot thank you all enough and if its not too greedy to ask; keep praying for me!

Xoxo,

Reagan

Grandma and Grandpa Benjamin telling me that I can keep my pony at their house :)

Grandma making faces at me

My nurse Myrna put some medicine (smells like bananas... tastes not so good) in my mouth... I promptly spit it out and blew bubbles with it :)

8/19

Today I weighed: 484 grams or 1 pound 1 oz

I had a crappy morning! I had been getting progressively worse with my oxygen saturation and at 3AM I had to have my oxygen turned up to 100%. Maria called Mommy and she came upstairs right away. She called Daddy on the way and he was ready to hop in the car and get here too but Mom said to wait until she got to me to see what was going on. I was not a happy camper... My left lung was somewhat collapsed so Maria, my nurse turned me on my right side to try and encourage the left lung to re-inflate. I was not happy about laying on my side so even though it was the best thing for me, I began to fight back. I tried to breathe over my ventilator and my saturation levels were still very low. I started to turn red... then a little blueish. Once they turned me back on my back I started to do a little better, likely my lung had re-inflated somewhat, but I was still irritated and still fighting with my vent. So at 4:30AM the nurse practitioner ordered a mild sedative to help me relax and let the vent do its job. I relaxed immediately and my oxygen was down to about 78% by 7AM.

...but I wasn't done making everyone nervous yet! Around 8:30 AM I decided to throw another fit. I had the doctor, my nurse, and the respiratory therapist in the room, I had to be bagged for a few minutes to get my O2 Saturation back up. Then Dr. Colayzi made some vent changes, Dawn from respiratory re-taped my breathing tube, then Kim from Resp. re-taped me again after x-ray showed the tube was still high. FINALLY  I decided it was time to relax a little. Throughout the afternoon I got progressively better! I got my oxygen level down as low as 46% and finally settled on it being about 55%. I decided I owed poor Maria (and Mom & Dad) a good night and I behaved like a champ for her shift from 7PM to 7AM 8/20, keeping my oxygen at about 55% all night.

Dr. Colayzi says we were far from out of options. Lung collapse is very common in babies my size and it is not an irreversible condition. She said we may consider steroid shots within the next 7-10 days to help my lungs out a bit more but we would like to hold out for as long as possible. Steroids can cause developmental challenges and most importantly they would like to do as few doses and as small of a dosage as possible for me as they can cause some dependency. As long as I can keep my oxygen requirements in the 40-60s range, we can hold off on the steroids so I have a goal to work on now :)

It was a rocky night, hectic morning, and a long day for little me, for Mommy and for Daddy but I have finally settled down... and really, what kind of baby would I be if I didn't keep my mom and dad up all night at least a time or two?

Visitors

Grandma & Grandpa Hulsebus

Great Grandma Jean

Uncle Jason & Aunt Jaime

Aunt Mari, Uncle Jurgen & my cousins Blake & Zane

8/16

8/16 - day of life 15 <3

Today I weighed 467 grams or 1.06 pounds or 1 pound or 1 pound 0.7 oz

MUCH better day today. I was such a good girl after I got the surfactant and Nitric last night! Also I got the final results of my head scan and echo and both my brain and my heart are in great shape :) ...also found out from my blood cultures that I DO have an infection :) this is only a good thing because it means that 1. we are already treating the problem. and 2. my respiratory status is not decreasing, but my little body is require more oxygen because I am trying to fight off this infection. I was started on antibiotics yesterday morning so the doctors expect to see a response to them within the next 24-48 hours. My respiratory status has already improved a LOT since yesterday. They've been weaning my ventilator back slowly, and I am down from oxygen requirements last night of 90+ to oxygen requirements tonight around 60-70... I am a rock star :)

I had to get a new IV put in my arm today. The IV in my arm is where I receive blood transfusions, and medicines like my insulin and antibiotics. Because my blood vessels are so tiny, the IV's in my arm only last a few days so I will have to get new ones quite often. Today's was no fun, I had to get poked 5 times before we got the IV in a good enough blood vessel to tolerate flushing and therefore the fluids that will run through it. But Hope (my nurse) and Shannon (an ambulatory care nurse who is excellent at putting IV's in tiny people) were very gentle and good to me.

After my IV I had to have one more stick today to draw blood for another blood culture to be conclusive. It was quick and I tolerated it very well. Mom thinks maybe I am feeling a little better as a result of the antibiotics already as I was much more active and expressive today than I had been the past 2 days.

Here is my day of life 15 photo

hard to see through the plastic but I was being a sleeping drama queen :)

getting comfy... one foot out, fast asleep

worn out after an exciting day <3

My visitors today were:

Grandma Benjamin

Kadie Ritland

News from Mommy:

BEST. DAY. EVER... After a deep sigh of relief this morning that Reagan's repiratory status had improved, I knew today was going to be a much better day. Reagan and I spent much of the morning with my mom, chatting and hanging out. Then Matt got here after a while my mom took off, and the 3 of us had some quality family time. I could have watched Matt & Reagan all day! She was opening her eyes to check him out and he just sat there talking to her, telling her how sweet and wonderful she was, enough to melt anyone's heart... then Kadie Jo came to visit. It was so wonderful to sit with her and have an honest and normal conversation (okay mostly snarky, sarcastic, and sassy... but if you know us you understand :) Then came the best part of the day... after watching poor little Reagan get a new IV line in, have blood drawn, in addition to having her regular labs drawn... the happiest moment of my life so far was about to happen and I didn't even know it!

Myrna, Reagan's nurse said it was time to change her bedding and someone would need to hold Reagan while she made the switch... "and it might as well be Mom" My heart stopped, I've been waiting 15 days (and what feels like my entire life) to get to pick up our little girl and I figured I would continue waiting for a while. With the help of another nurse, we gently picked her up, careful to keep her flat, then the nurse said, "go ahead, cradle her in your arms and love on her" I got to give her kisses (one from me, one from her Daddy) and just snuggle her, FINALLY!!! The whole ordeal lasted probably less than a minute and a half and it was tough to put her down, but I can't even attempt to put into words how amazing it was to pick up our tiny little one and hold her. She even opened her eyes while I was holding her :) The only thing that could have made it more perfect is if Matt were here to give her kisses too, but now that we know we can help with things like that, he will have his turn next and I can't wait to see it! I have no words to describe how wonderful and amazing it was (me, the one who always has lots of words, I have none :) just a big ole' heart full of love tonight <3

It really reminded me to celebrate ALL of Reagan's little milestones and our milestones as a family. Today was a big and busy day in the life of such a tiny baby. She continues to astonish us with her resilience and beauty and we are SO lucky to get to witness her progress and her big moments. And it reminded me of one other thing... I AM A MOMMY! Seriously how great is that!?

Lots and lots and LOTS of LOVE, <3

Em

P.S. I realize I may have gotten a little carried away with the :) and <3 tonight... but really... can you blame me!?!? :)

8/15 (a little late :)

Good morning! Mom finally got the camera battery recharged so we have new pictures today! :)

day of life 14

8/15 - day of life 14
Today I weighed 465 grams or 1 pound .05 oz

Today was a little rocky. This morning my oxygen needs were really high (80+) the doctors gave me surfactant, but that just made me mad :) I was a little up and down throughout the morning and Dr. McElroy said one of three things has happened... either my PDA (duct in my heart) has opened up, I have a mild infection, or I've had a bleed in my brain. So he ordered tests for all three options, and started me on antibiotics to begin treating me for the possible infection... and Mommy & Daddy prayed that it was NOT a bleed in my brain as anything else is treatable.

Then Mom played bully :) the echocardiogram was first, Mom stood over Roger's (the tech) shoulder the whole time and asked about 500 questions, when he was finished, he said "I can't say officially, but I don't see any sign of PDA". WOO HOO!!! The brain scan was next... that tech was a tougher cookie for Mom to crack but after a battery of questions he finally gave in and said "I don't see any bleeds and to be honest, I don't see the spot they were concerned about last week either... but I'm just a nobody tech, I'm not a doctor, what do I know"

Dr. McElroy came in a few hours later and told Mom that unofficially, he had looked over the tests and both looked good to him... THANK GOD!! So... likely I have a low grade infection, I was started on antibiotics all day so they should start to take effect within 48 hours.

But my night was a little rough as well. My oxygen needs got really high again and they gave me more surfactant. Then they started me back on the Nitric to try and help me out. My glucoses have been high as well so they have upped my insulin levels. Somewhere between 2AM and 5AM I decided to get happy... my oxygen level is back down to 52 (awesome!) and my glucose levels have been steadily coming down, and I am overall becoming much more stable :)

In other news... I opened both eyes today and let Mommy see how pretty I am! When Roger was doing my echocardiogram this afternoon he put cold ultrasound jelly on my little chest, and both of my eyes shot open! Mom thinks I was trying to ask "what in the world do you think you're doing there?" Enjoy some pictures from my most recent photoshoot :)

pretty baby blues!!

Stop with the pictures already mom!!

Pretty little lady

Sticking my tongue out at you :P

My Grandma Benjamin came up today to hang out with me and Mommy :)