Where we are

By Nikki Tuma

Here is a little story about Kreighton that got us to where we are today :

Kreighton was born July 25, 2013.. when we found out we were pregnant with him, there were no abnormalities that arose with the ultrasound. July 25th came and it was my induction date (he was originally due on July 18th) , during my induction, I was complaining that i was hungry and the only thing they allowed me to eat was a red Popsicle. Everything was going great until there were some alarms sounding and a lot of nursing running in the room. I had no idea what was going on, i was just laying there eating my Popsicle. Well, i guess his heart rate dropped super fast for some unknown reason, they threw my Popsicle away, put me on my back and threw oxygen on me.. all was well after that until the Dr. came in and broke my water. When the dr broke my water there was quite a bit of meconium (this is where the baby has a bowel movement in the womb) and he was concerned that he may aspirate and talked about having a C-section. Shortly after the doctor left, Kreighton was ready to come out full force. There was no time for a C-section, and he was born … they had a NICU nurse in there to check him out, and everything was A-OK… he came out screaming!!! we got discharged 2 days later and went home to what we thought would be a “normal” life raising our now 3 beautiful kids. I tried breast feeding, but it just wasn’t going great, and he wasn’t latching very well.. When he drank out of a bottle, it leaked out of his mouth a lot, we just assumed it was the type of nipple so we tried other bottles and it still happened. As the months went on, Kreighton, was barely gaining weight. He was staying around the 1-3% on the growth chart, and at our monthly Well Baby checks, it was showing he was not meeting the milestones as he should be. at about 8 months old kreighton was still not rolling over, let alone sitting up so his doctor then referred us to a GI doctor in Omaha because he was more concerned about his weight loss than his milestone. The GI doctor had us just increase his bottle feeds and come back to recheck weight in a month. when he went back for our 1 month check, I had mentioned to the GI doctor about Kreighton not meeting milestones, so he then referred to a neurologist in the same clinic. We went and seen him that day.. . At first, the Neuro dr just said he thinks Kreighton was just going to be a “slow learner” and ordered physical therapy for 3 months and then to come back and re-check his progress. After the 3 month recheck * this was July 21st (we had a GI appointment this same day ) he said he wanted to get a MRI at some point just to see if this showed anything (he said it was no rush but just before the end of august to get this done ). We then left the neuro appointment and went to GI. At this appointment they admitted him to the hospital right away because he had lost 4lbs in 2 weeks!!! . Since he was in the hospital, they went ahead and did the MRI to get it out of the way. While at the hospital , they found that kreighton had a super high palate (the roof of your mouth) its so high arched that it almost didn’t form they told us. They said this was the reason for the lack of being able to suck on a bottle correctly. SO, we ended up having to put in an NG tube.and then eventually put in a permanent Gtube in September. This broke my heart, but it was nothing near close to how broken my heart was 2 days later the day before my little Miracle turned the big ONE . As me and my wonderful husband were sitting in the hospital room holding kreighton and playing with him, two doctors (his neurologist and the hospitalist) along with 4 nurses came into the room with papers. My heart sank as i knew this wasn’t going to be good news. This would be a time a day i will NEVER EVER forget , i still get emotional talking about this day. Dr. told us that he had some bad news, and that his MRI shows a very rare brain malformation called HOLOPROSENCEPHALY . He told us that the survival rate of a child with this condition was very very slim. The doctors gave us as much information as they could and tried to get everything together so we could go home the following day. The day my baby turned ONE, we were able to go home that afternoon. The last year and a half have been one hell of a roller coaster ride. As soon as we got home, I searched on Facebook for anything even remotely close to HOLOPROSENCEPHALY because I knew there were groups for anything on FB. I found the most amazing support group ever called Families for HoPE. When I found this group, we learned that in just 2 short months, they were hosting a conference in Dallas for families who were affected by HPE (holoprosencephaly) we wanted to go so bad to learn more about this condition and to see what we could do to better help Kreighton as well as meet other families going through the same thing. We have now attended 3 conferences and look forward to our 4th conference next summer in Ohio !! Kreighton strives everyday! He is continuing to work so hard at therapy. People think I am nuts driving a little over an hour one-way just to take him to therapy, and honestly, I DON’T CARE. His therapists are ABSOLUTELY AMAZING with him and have been there with him through this whole thing. Here we are, 2019…Kreightons legs aren’t working as well as they have been, he had surgery in late 2017 for a tendon release which has helped him not be as tight. He still seems to drag his leg but they think it’s more a neurological issue rather than an orthopedic issue … but we do what we can and he works with what he has ♡♡ He has finally reached 45lbs!!!! As you know weight has been an issue since day 1 !!! If you can believe it, he was the biggest baby coming into this world at 8lb 6oz !! And the biggest blessing of all… he will be 6 in 4 short months guys !!! SIX !!!!! and if you have made it this far reading …. We thank EACH AND EVERY ONE of you who have supported Kreighton in every way, shape, and form . If it wasn’t for all of the support from you all, I do not think we would be as strong as we are today.!!!

 

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