I wanted to put in a quick update. Jake is doing great! They are starting the process of weaning him off of his ventilator onto another less powerful ventilator which is great. He has a few weeks to go with that but at least there is progress. He is handling his feedings better now and they are actually getting bigger which is also great. He pooped two nights ago which is something I never thought I would celebrate so much in my life. I never knew how much our Intestinal system affected every other part of the body!
Jake has 2 massive hernias. So big in fact the nurses say they have never seen any get this big on a baby this small. The Dr's here at UVRMC do not perform bowel surgeries so they have been in contact with primary childrens and at this point the D's have all decided that he is too small and delicate to perform anything yet and they also think that the hernias look quite healthy as far as no kinks, or hardness. They are soft and can reduce back up into his belly quite easily. The problem that we are having with the is they hurt him when they get reduced but if they dont get reduced then gasses and poop are getting stuck down in them and it makes it harder and more uncomfortable for him to poop! Anyway, that is one of our major concerns right now.
Brookie and I are doing good! I can't thank all my wonderful friends and neighbors enough for all the love and support they have given to us. I couldn't have gone through this and mostly wouldn't be able to visit Jake without them!!! Thank you Thank you Thank you. And I love all my facebook messages that I get. Especially on rough days it is so nice to read all your comments, it reminds me that Rory and I are not alone in this.
If anyone knows of anywhere to find soft, button-up boy doll clothes let me know. Jake is to the point that as long as he doesn't have an IV in his hand he can wear a shirt, (although they look like dresses on him)!!! The poor little boy! His first room will have pink walls and his first outfit is a dress!!!
i'm so glad you have a blog to keep everyone updated on your sweet baby. he is so cute, and just know our thoughts and prayers are with you guys!
ReplyDeleteI found your blog through the Manti Messanger. I haven't been able to stop thinking of your family since I read about your baby. My baby just got released a week ago from the NICU at Utah Valley. Although we only had a two week stay there it is a great place if you have to be there with excellent doctors and nurses.I will be praying for your cute little Jake and your family.
ReplyDeleteI, too, saw the birth announcement in the paper today and I let out a little gasp when I saw Jake’s picture. I can’t help but react when I see a preemie. We have a picture with my husband’s wedding ring loosely hanging on my son’s “bicep”. He was born at 25 weeks 1 day and weighed 1 lb. 15 oz., big for his gestational age. It just tears me apart to know of others having to experience this same thing. My son had a PDA ligation which required transfer to another hospital, double hernia repair, and laser surgery to stop ROP, as well as numerous other preemie issues. He avoided any brain bleeds and NEC. He finally came home exactly 4 months after he was born, three days before Mother’s Day. The first three years were long and difficult. My son is now six years old and in Mrs. B's kindergarten class at EES. He is very typical now with mild lung issues when he develops a cold or has allergies.
ReplyDeleteI know you and your family have a long road ahead of you. I want to share a book title with you that was invaluable for my husband and me - Preemies: The Essential Guide for Parents of Premature Babies
by Dana Wechsler Linden, Mia Wechsler Doron, and Emma Trenti Paroli. It is available on Amazon and among all the preemie resources we read and studied, this was by far the best. However, in six years time, I imagine there are some new resources I am unfamiliar with, but I know you would not be disappointed with this book. Your son’s story is amazing and will only become more amazing as he grows. I hope all the best for you and your family and if you would ever like to talk to someone who has been in your place (not your exact situation, but I understand the experience), I would be happy to chat. tiffanyiswrightatgmaildotcom
I have a lot of old doll cloths patterns from my days of sewing cabbage patch cloths. I will get them out and see what I can find that might work for him. If you can, stop by the school with his little shirt so I can get an idea of exactly what size to work towards...
ReplyDeleteWe are so glad baby Jake is doing well. Gannon and I would love to help in any way we can. Our thoughts and prayers are with you.
ReplyDeleteMy friend Heather just shared your blog with me! We had an UBER micro preemie at UVRMC too! My little girl, Darbi, weighed 15.5 ounces at birth. We should start a ZERO pound baby club. :) She is 2 now and is doing really well. Good luck with everything if you need to be transferred to Primary's. The drive is NOT a fun one. We did a one month stint up there also for a perforated esophagus. I know you probably don't have time for his but I documented the whole experience on our blog and a lot of our pictures look very similar to yours. Even Darbi liked to sleep with her arms over her head at 1 pound. :) I'm a stay at home mom now and live just up the street from the hospital (like not even a mile) so even though we're strangers, let me know if you need anything. The Walker's on State has really tasty Dr. Pepper and for every 5 drinks, you get one free. :)
ReplyDeleteI'm Audrey's friend Heather, who shared your story. Audrey's Darbi and my Paizlei were in the NICU at the same time.
ReplyDeleteMy heart goes out to you and your family during this roller coaster ride you are on. Your little Jake is in the best of hands...Dr. Minton was my absolute favorite doctor there, and we had countless nurses who we absolutely loved. Nurse Caytee is a former Sanpeter...she was one of our favorites.
We went in blind, without knowing anything about the NICU, or the experience we would have while our little girl was in there. My biggest advice to you, if you feel something isn't working or you are not seeing results, don't hesitate to be that voice that your Jake needs.
Like Audrey, if you need anything, let me know. We live in Gunnison, but can do whatever is needed. And know that baby Jake and your family are in our prayers.
On a side note, my hubby and Rory went to school together, though I believe Zane is a bit older.