I have been meaning to write this all down for a while but whenever I would start I felt too emotional to tell the story but I think it is time.
It all started when I was 20 weeks pregnant with Henry and was in for am ultrasound. Everything was looking normal except the brain looked a little dilated and there was an unusual amount of liquid around his brain, they told me that everything was probably normal but they wanted to follow up anyway. The next appointment it had gotten worst so they decided it was time to send me to a specialist because when it comes to the brain and the heart the doctors don't like taking chances! We were so worried about it! Stephen was working with special needs children at his job and knew exactly how much it would take to care for a kid with brain problems and it was not something we were prepared for but we knew we would love this baby no matter what! So after many prayers we went to the appointment and it was amazing, nothing was wrong with his brain anymore! We got some amazing 3D ultrasound pictures covered by insurance! They wanted to follow up one more time before we went in though to we scheduled that appointment!
He stayed in the Madison NICU for three days, until the morning of the 3rd day I was told that he would need to be life lighted to Primary Children's Hospital because something was wrong with his Kidneys and he most likely had something called post Urithial valves which was preventing him from peeing.
Oliver got to sort of meet Henry before he was moved to Primaries and this is actually out first family picture!
I took this tiny plane to Utah and an Ambulance to the hospital.
I'm home to see Oliver!
Trying to feed Henry, it was a challenge for a long while because bad Kidneys make food take gross to babies and anyone with bad kidneys!
Henry and I
He looked so miserable! He had to be on a really bad breathing machine and couldn't eat anything! It was so sad! So we stayed longer and just stuck with the same old routine! Finally around a week before Henry turned one month they were going to send him home! But they planned on sending home with a Cath, feeding tube, and Oxygen! I was so excited to have my baby home all the time I didn't even care, I would handle it! But days before it was time for him to go home, Henry was eating so well they took the feeding true out. And just as an experiment they took the cath out and he was peeing like a champ! So in the end I got to take my boy home with just the oxygen! They actually think all of the times they had to cath him actually got rid of the blockage that was causing the main problems! So they sent us home the day he turned one month old, but with Oxygen, his kidneys are still awful and terrible reflux of his pee, where 1 is the least extreme and 5 in the most, Henry has stage 5,
One of the best days since then is when Henry got off of his Oxygen, a weight was literally lifted from me. Henry has appointments with Nephrologist and Urologist still about every 3 months. In Urology we learn that his reflux has not improved much and he will likely need surgery when he turns one to help with it all unless it improves on it's own, however Nephrology is all good news, today we learned that he now has normal Kidney function for his age and are taking him off a lot of his meds and are going to follow up to make sure that it is still going good in 6 months!
We feel so lucky to have this wonderful boy in our lives and thankful to everyone who has prayed for him or sent good vibes and helped us however you have been able! Thank you all for helping us and please still keep Henry in your thoughts!
It all started when I was 20 weeks pregnant with Henry and was in for am ultrasound. Everything was looking normal except the brain looked a little dilated and there was an unusual amount of liquid around his brain, they told me that everything was probably normal but they wanted to follow up anyway. The next appointment it had gotten worst so they decided it was time to send me to a specialist because when it comes to the brain and the heart the doctors don't like taking chances! We were so worried about it! Stephen was working with special needs children at his job and knew exactly how much it would take to care for a kid with brain problems and it was not something we were prepared for but we knew we would love this baby no matter what! So after many prayers we went to the appointment and it was amazing, nothing was wrong with his brain anymore! We got some amazing 3D ultrasound pictures covered by insurance! They wanted to follow up one more time before we went in though to we scheduled that appointment!
Our next appointment came and we were so sure everything was going to go well that Stephen didn't even take off of work for it! I had Sarah come and we had a whole day planned in Idaho Falls for that day and our friend Morgan was going to be induced that day so we were looking forward to meeting her new baby. But when I went into that appointment we found that the rain was perfect like expected but something else was wrong, I had very little amniotic fluid around the baby and needed to go to the hospital right away. So we rushed to the hospital in rexburg and called Stephen to get out of work. The Doctor came and tested to see if my water broke and pt me on steroids and an iv to try to get the baby to mature faster because if my water broke the baby would need to come right away! But strangely enough my water hadn't broken and that meant that the lack of amniotic fluid had to be because the baby wasn't producing it.
So they put me on hospitalized bed rest until I was either 24 weeks along or I started losing more fluid (9 days). My wonderful friend Sarah took Oliver in and watched him the while time I was on bed rest and would bring Oliver to the hospital everyday after his nap and would send us updates and pictures of him every time she wasn't with us, she even took him to a play group! She is seriously the best friend!
That was definitely the hardest part of bedrest was being away from Oliver but you never realize how much you want to walk around until you are told you cant! Thankfully I had a lot of friends help me through! Sarah of course would watch Oliver and bring him to me where we would let him play with train tracks on the floor and watch shows with me. She also did nails with me one day, brought games to play, and was there everyday, she even bought me beautiful flowers! Stephen brought me way o much stuff to make it feel like home and did what he could for me and spend the night on the couch a few time. Morgan and Rikki who has there baby the first day I was on bed rest still managed o visit, being me a treat, and an adult coloring book! My RS president visited lots of times and texted me when she couldn't make it and my visiting teacher visited and made Henry a blanket! Beyond that I had the best nurse who made sure I was comfortable and brought me ice cream and sodas and whatever food I wanted to help the baby gain weight, she was seriously the best nurse ever! I also was very grateful for harry potter weekend on ABC family and a LOTR marathon on another station!
Everyday I would have an ultrasound with the same results and it was so peculiar that they had a few students come in to look because it would be rare for them to see an ultrasound like this again! Finally with no changes in amniotic fluid we scheduled my c-section since a v-back was out of the question at this point.
On March 9th we went in and Henry Daniel Kruse was born at 4 IB 11 oz, much bigger than expected!
HE was sent immediately to the NICU and I was put into recovery, I was so sick from surgery I couldn't even pretend to sit up , so I wasn't able to meet sweet Henry till late that night, but I sent Stephen, my mom, and Sarah to meet him! It was wonderful when I was finally able to meet him, though they thought I was 17 at first and not allowed to go in, haha!
Once at the Hospital they immediately put a Catheter in and feeding tube and incubated him. I has there in about a half hour and My Mom and Stephen were driving there.
And so my days changed, We were incredibly blessed that my parents moved to Utah about a year before this all happened so I had a ton of support, a place to stay, and a babysitter for oliver! Everyday I would spend my mornings with Oliver, then during his nap my awesome sister Amy would watch Oliver while my Mom and I would go visit Henry and on Weekends Stephen would drive down to be with us. Oliver and us would go on adventure and then we would go and bond with Henry.
he used to always get these wrinkles
At some piont they decided that we got to take him home and were working on it and then when we went to the Hosptial the next day Henry had gotten an infection and was really bad off!
a gift to oliver from the hospital to help oliver wth his brother being in the hospital
Henry and I
The day I brought him home I was so excited but so overwhelmed, he was on so many meds and I had to pay attention to so many things I was worried I would mess everything up. So I sat down and made a schedule of all of his meds, a place to write his stats from his oxygen and how many times the machine beeped at us, and what I needed to remember, I typed it up and called in the Henry Report. The next day We all went home to Rexburg. There Oliver and Henry were able to become best friends!
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