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
Friday, August 24, 2012
Wednesday, August 22, 2012
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!)
Tuesday, August 21, 2012
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 :)
Monday, August 20, 2012
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
Thursday, August 16, 2012
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.
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! :)
My Grandma Benjamin came up today to hang out with me and Mommy :)
day of life 14
8/15 - day of life 14
Today I weighed 465 grams or 1 pound .05 oz
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 :)
Tuesday, August 14, 2012
Updates from Reagan & Mommy 8/14
I did it!! This morning I weigh 1 POUND .5oz
.... someone throw me a party because my name is Reagan and I am AWESOME!
I am also starting to peek! My nurse, Jo, said that this morning I was peeking at her with my right eye :) I've not yet let Mommy and Daddy see it, but maybe I'm just waiting for the right time <3
Dr. McElroy didn't change much today. They are now fortifying Mom's breast milk before I get my feedings to add more calories. This should help me continue to grow without overloading me on the amount I'm getting. We also started talking about steroids for my little lungs but the doctors would like to wait until I get a little bit bigger, stronger, and older to give me those.
Thoughts from Mom:
Today's post is inspired by an amazing man, I am so lucky to have married someone who is my best friend, can be so strong when I can't, and who always seems to knows EXACTLY what I need to hear when things are rough. (well almost always, he's still a man after all :)
The overall feeling from rounds today was less positive than usual. Maybe it was just the morning, or the tone of the doctors' voices, but it just felt less encouraging today... Or just maybe it was the words (and the context didn't matter as soon as they were said) "unless I think she is going to die without... but we're not there yet"... die? yet? Why in the hell did he have to say that!?
Don't get me wrong, Matt and I are NOT stupid (or at least as stupid as we look :) we've known all along that the reality is Reagan has a lot of odds to overcome. We've discussed it, we know what she is up against, what we're all up against; but to hear the words, right from the doctors made the air feel heavy and suffocating. Now, I don't know if Reagan's condition is actually any worse today than it has been, I think maybe some days reality just hits a little harder than others.
By the time Matt had to leave, I think we were both feeling a little... overwhelmed and more down than usual. Its hard to look at her everyday and believe that there could be anything wrong with this perfect, tiny, little person. She is SO BEAUTIFUL... and I'm REALLY not just saying that because she is our kid (really Im not). The pictures do nothing for her, you honestly have to see her to get the full picture, she is just awe inspiring and adorable. (don't believe me ask her Grandmas :)
Matt wasn't gone 10 minutes before he sent me this text: "Sorry for being negative, we should be happy she is here today" ... this made me cry because he is SO RIGHT! And not just for us, not just for Reagan, I think maybe we can all learn from the situation. Maybe we should all spend less time focusing on the negatives, and more time being happy and thankful for what we do have... because believe me, it can change in a heartbeat.
So there is a lot wrong with Reagan right now... she may look like it, but she is not just a tiny version of a full term baby, she is a premature baby with premature organs and a premature brain. As Dr. McElroy told us today, Reagan is going to have lung disease, she is going to go home on oxygen (now someday she may outgrow her need for it), but there will be repercussions from being born so prematurely. I'm not trying to be a downer, this is just reality for Reagan and for us.
Now here's where I'm going with all of this...I'm a big fan of inspirational quotes these days (wonder why) and I stumbled upon this one this morning and feel obliged to share it with all of you:
"God has perfect timing, never early, never late... Understanding takes a little patience, and a LOT of faith"
Now don't get me wrong, if I could I would trade everything I've ever had, everything I ever thought I wanted, and then rope the moon and all of the stars if I could just have carried Reagan to full term and given her a better, easier start to life, but apparently that wasn't the plan. It's not that I don't have faith in the doctors' abilities to help her grow and develop here in the hospital, I just wanted better for her than what she is currently faced with. An easier start than to have to fight so hard... BUT this quote reminded me of something Dr. McElroy said to me the third day Reagan was here:
"In many cases, it is more detrimental for a baby to stay in the womb with little fluid where it is at the mercy of nature than to be born into a world with modern medicine where we can control her surroundings and give her every possible medical advantage we know of."
Maybe Reagan wasn't 17 weeks early (clearly she was chronologically) but maybe she was right on time with God's intentions for her. So I'm going to choose to believe that option, maybe I am naive and maybe this is my coping mechanism, but I choose to believe that Reagan is EXACTLY where she needs to be right now.
Furthermore, what a miracle! To look at her tiny little face everyday, to watch her grow and develop, to see what we would not otherwise be able to see. Matt is right, we need to be grateful and happy and thankful for everyday we have Reagan. And for every milestone we get to observe.
.... someone throw me a party because my name is Reagan and I am AWESOME!
I am also starting to peek! My nurse, Jo, said that this morning I was peeking at her with my right eye :) I've not yet let Mommy and Daddy see it, but maybe I'm just waiting for the right time <3
Dr. McElroy didn't change much today. They are now fortifying Mom's breast milk before I get my feedings to add more calories. This should help me continue to grow without overloading me on the amount I'm getting. We also started talking about steroids for my little lungs but the doctors would like to wait until I get a little bit bigger, stronger, and older to give me those.
Thoughts from Mom:
Today's post is inspired by an amazing man, I am so lucky to have married someone who is my best friend, can be so strong when I can't, and who always seems to knows EXACTLY what I need to hear when things are rough. (well almost always, he's still a man after all :)
The overall feeling from rounds today was less positive than usual. Maybe it was just the morning, or the tone of the doctors' voices, but it just felt less encouraging today... Or just maybe it was the words (and the context didn't matter as soon as they were said) "unless I think she is going to die without... but we're not there yet"... die? yet? Why in the hell did he have to say that!?
Don't get me wrong, Matt and I are NOT stupid (or at least as stupid as we look :) we've known all along that the reality is Reagan has a lot of odds to overcome. We've discussed it, we know what she is up against, what we're all up against; but to hear the words, right from the doctors made the air feel heavy and suffocating. Now, I don't know if Reagan's condition is actually any worse today than it has been, I think maybe some days reality just hits a little harder than others.
By the time Matt had to leave, I think we were both feeling a little... overwhelmed and more down than usual. Its hard to look at her everyday and believe that there could be anything wrong with this perfect, tiny, little person. She is SO BEAUTIFUL... and I'm REALLY not just saying that because she is our kid (really Im not). The pictures do nothing for her, you honestly have to see her to get the full picture, she is just awe inspiring and adorable. (don't believe me ask her Grandmas :)
Matt wasn't gone 10 minutes before he sent me this text: "Sorry for being negative, we should be happy she is here today" ... this made me cry because he is SO RIGHT! And not just for us, not just for Reagan, I think maybe we can all learn from the situation. Maybe we should all spend less time focusing on the negatives, and more time being happy and thankful for what we do have... because believe me, it can change in a heartbeat.
So there is a lot wrong with Reagan right now... she may look like it, but she is not just a tiny version of a full term baby, she is a premature baby with premature organs and a premature brain. As Dr. McElroy told us today, Reagan is going to have lung disease, she is going to go home on oxygen (now someday she may outgrow her need for it), but there will be repercussions from being born so prematurely. I'm not trying to be a downer, this is just reality for Reagan and for us.
Now here's where I'm going with all of this...I'm a big fan of inspirational quotes these days (wonder why) and I stumbled upon this one this morning and feel obliged to share it with all of you:
"God has perfect timing, never early, never late... Understanding takes a little patience, and a LOT of faith"
Now don't get me wrong, if I could I would trade everything I've ever had, everything I ever thought I wanted, and then rope the moon and all of the stars if I could just have carried Reagan to full term and given her a better, easier start to life, but apparently that wasn't the plan. It's not that I don't have faith in the doctors' abilities to help her grow and develop here in the hospital, I just wanted better for her than what she is currently faced with. An easier start than to have to fight so hard... BUT this quote reminded me of something Dr. McElroy said to me the third day Reagan was here:
"In many cases, it is more detrimental for a baby to stay in the womb with little fluid where it is at the mercy of nature than to be born into a world with modern medicine where we can control her surroundings and give her every possible medical advantage we know of."
Maybe Reagan wasn't 17 weeks early (clearly she was chronologically) but maybe she was right on time with God's intentions for her. So I'm going to choose to believe that option, maybe I am naive and maybe this is my coping mechanism, but I choose to believe that Reagan is EXACTLY where she needs to be right now.
Furthermore, what a miracle! To look at her tiny little face everyday, to watch her grow and develop, to see what we would not otherwise be able to see. Matt is right, we need to be grateful and happy and thankful for everyday we have Reagan. And for every milestone we get to observe.
Monday, August 13, 2012
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
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
Sunday, August 12, 2012
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
Friday, August 10, 2012
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
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.
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.
Thursday, August 9, 2012
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.
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
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