Briggs Family Website
Sean, Liz and Destiny
Periodic Updates
Hi, I'm Destiny.
I am Mommy and Daddy's little miracle baby!
I was born May 21st, 2008 at 2:53 p.m. by c-section. I weighed 900 grams which is just under 2 pounds, and I was 14 inches long. Because I came into the world 9 1/2 weeks early, Ispent 45 days in the NICU at Utah Valley Regional Medical Center. Mommy and Daddy are glad I am okay and they continue to follow my progress with the doctor. They prefer to stay with me when I am in the hospital and want to finally be home with me for good.
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January 05th
On Friday, January 02nd, we got the final verdict from Destiny's GI that she needs to have surgery. The surgery is called a nissen fundoplication. If you would like information about it, you can go to http://www.geocities.com/fundofamilies/description.html to read the information there and follow along with diagrams.
Up until now we had been hoping that her feeding tube would buy her enough time to either grow out of her reflux or find a combination of medications that would work for her well enough to stay out of surgery. Unfortunately we have run out of options. The good news is that she will have this done at Primary Children's Medical Center, the region's leading children's hospital.
We do not have a date yet for when this will take place. We will keep you updated as we come across the information.
-Liz B,
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December 09th
This is going to be very blunt, as I don't have the energy to soften it. Last night Destiny had a period of 2.5 hours where she would have choking episodes in which she could not breathe. After calling her GI today, we found out that if she has the same problems tonight then he will be sending her for an xray tomorrow to make sure her NJ tube is in the correct place, and then if it is, then he will be scheduling her for a ph probe test and talking to a surgeon about her getting in for a nissen fundoplication surgery.
We've been dreading this for a long time. Hopefully everything will go well tonight, but just in case, we thought we ought to let people know. Part of the problem is that Destiny's reflux hasn't been getting better. In some areas it has stayed the same since getting the NJ tube, and in other areas it has gotten worse. Her GI is obviously concerned.
I will be sure to let you know more information as it comes. In the meantime, please keep her in your prayers.
-Liz
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November 16th
(Liz)
I know I haven't updated any information on here lately. Part of that is because we went through some scary times since July. Destiny has now been in and out of the ER at two different hospitals more times than I want to count, much less the radiology department. She has been admitted to the hospital 10 times since she initially came home from the NICU. Destiny has GERD, which is a fancy name for acid reflux, and motility. These two combined together make a bad mix. Her reflux causes apnea (when she stops breathing out of nowhere) and bradycardia (when her heart rate drops dangerously low).
She is on medication to control it but even with the medication it was becoming unsafe for her to eat much of anything by mouth. Because of that, her GI doctor made the decision that it was time to have her get an NJ feeding tube. She got the tube on Oct. 23rd, two days after her five month birthday. NJ stands for nasojejunal. This means that the tube goes in her nose and ends in her jejunum, which is past the stomach, past the pyloric sphincter, and the connecting tissue to her small intestine.
In short, this means she gets her food dripping directly into her small intestine rather than going through her stomach at all. Any time she pulls out her tube she has to go get an xray done to make sure it is still ending in the jejunum because there is no other way to tell. When she gets her tube replaced she has to have it done under live x-ray, called fluoroscopy. She still gets one to two bottles a day but she is limited to one ounce each and only gets the bottles in order to make sure she will remember how to eat when it comes time.
Destiny is currently being closely followed with any GI issues including her feeding tube. She is on the tube in order to try to give her some time to safely outgrow her digestive problems. If she cannot safely come off of the NJ tube after four months, then they will consider doing corrective surgery at that time. The surgery that would be performed is called a Nissen Fundoplication. This is where they take the connective tissue between the esophagus (throat) and the stomach, and they wrap it around itself to tighten the space that allows food to come back up, hopefully getting rid of her reflux. This would also help her motility with making food go down through the digestive tract normally rather than upward.
If at any time something serious happens, or if medications cease to control her problems enough to keep her safe even while on the NJ tube, she could still need the surgery. The thing that we ask the most is for your understanding and your respect. We have doctor-ordered rules with Destiny because she is considered so medically fragile at this point. She will also start getting Synagis, which is a vaccine for RSV. RSV season has considered to have started now. Please understand that as strict as our contact rules were before with her, they are going to get even more strict now.
We do not do this to offend anyone, but merely to give our child a fighting chance. After all, a simple cold virus landed her in the ER three times in two nights because she was unable to breathe. I will try to keep you all updated. In the meantime, thank you for reading and understanding.
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July 29th
Mommy, Daddy, and I are so excited! Dr. Farnworth said that because I didn't have any problems on room air, I get to go home without oxygen. I have my cannula out, which I hated having on my face, and Mommy doesn't have to carry around the "torpedo" (travel oxygen tank) any more when we go somewhere. We are so happy. I have little red circles on my face because my skin is raw where the circle stickers were (tender-grips) but it should go away soon.
Such a good present for being in the hospital!
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July 28th
I am doing really well at keeping my stats up so Mommy asked the nurse if I could try a room air trial. That's where we take me off of oxygen and watch the monitors to see if I can stay off of it or not. I started the room air trial at noon and I am doing well so far, with no problems at all. Dr. Farnworth is covering for my Dr. today and he said that he is keeping me overnight again to see if I can pass an overnight room air trial. If I can, I will go home without oxygen, on just a monitor. Mommy is crossing her fingers for me!
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July 27th
Happy zero day to me! Today is my due date, so my adjusted age is no longer a negative number! 
I had to go to see Dr. Hacking today because my heart alarm went off twice yesterday and twice today. I had to see Dr. Hacking because Dr. Later is out of town for the week. He found out that I was really anemic again and I needed another blood transfusion. This is my fourth one, and only two weeks since my last one. I had to go to the hospital again (my fourth visit since being home) in order to get it. I got my blood transfusion with no problems, and I have to stay the night to be watched.
I weigh 5 lb. 4.5 oz.
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July 23rd
Everything checked out well at the hospital while I was on observation. That means I got to come home! I came home in the evening, at around 9:00. Mommy still has to watch me closely but there wasn't any reason to keep me in the hospital for now. They determined that what they were worried about was not happening at the right time to be concerned. So I'm okay, I promise.
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July 22nd
I choked while eating today and after Mommy took the bottle away I choked again on my own. I turned a really bad pasty gray color, so Mommy called the doctor after I didn't get my color back in about 10 minutes. They had her take me to their office.
They were worried enough about how I was breathing that they wanted to make sure I didn't have fluid in my lungs, so they had Mommy take me down for an x-ray at the hospital. Thankfully everything turned out okay and they sent me home, but told Mommy to watch me really closely and call if some particular things happened.
Later on I was non-responsive, letting my eyes roll back into my head and being limp when Mommy let go of my arm as a test. Mommy called the doctor like she had been told to, and I was sent back to the hospital.
I weigh five pounds today!
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July 21st
I am two months old today. Mommy updated my dollar bill pictures if you want to see how I've grown. Sunday is my due date!
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July 16th
Doctor Later let me go home again today, as I was shy enough in front of the nurses that I never misbehaved with my eating. Mommy is crossing her fingers that my feeding problems don't come back. If they do though I have to go see the occupational therapist, who specializes in feeding the babies in the NICU. Mommy and I would have to take lessons from her.
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July 15
I had problems breathing while eating again today so Mommy called the doctor, we saw him in his office, and then I was admitted to the Pediatric ICU again. I wish I could just be home. The doctor is thinking this might be because of acid reflux but the test we did for it Saturday night to Sunday morning came back normal so he doesn't know. Right now we are waiting to have prevacid kick into my system and see if it takes care of the problem. It can take up to ten days though so I might be stuck here for a while.
I weigh 4 lb. 5 oz.
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July 13th
I got released from the hospital today after my third blood transfusion. The doctor told Mommy that I might have to have another one in about a month, too. He also said my problem was that I was so anemic that I wasn't getting enough blood to my heart and lungs. I am doing much better now and just look really pink.
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July 12th
Lisa came and visited me today and we even found out that my pediatric night nurse, Margaret, hired her back when she first came to the hospital. Another unexpected visitor came today from a group of Harley Davidson guys. He gave me a blanket that I can grow up with. He was amazed at how small I am. Mommy told him thank you for me and explained that I really am a lot bigger than I used to be.
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July 11th
I had to go back to the hospital today because my heart monitor went off five times in thirty minutes and because I was holding my breath while I ate. Mommy and Grandma Scofield were really concerned about me. I got an i.v. in my head and waited today to find out what is wrong. They put me in a really big bed. I miss my cradle.
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July 4th
I'm Home!!! Happy independence day to me -- I'm free of the NICU! Mommy says she will always remember the day I came home because it is the best 4th of July she has ever had. I love being able to have my own space and have it quiet some of the time. That NICU sure is noisy. Mommy also needed to make space for more pictures, so she took a lot of the June photos off. Now she has sort of highlights for the month rather than everything. We need July pictures!!!
I weigh 4 lb. 1.5 oz.
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May 27th
I finally get food! They are giving me Mommy's milk through a feeding tube for now. They are slowly starting me on about 1 ml per feeding and they will work their way up to a full feeding from there. I hope I don't have to stop at some point because the nurses and doctors say that most babies have to stop and start a few times before they get it.
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May 26th
My bili lights came off today. This means that I don't have to wear my special sunglasses any more but I still have a hat covering my eyes for now. The nurses say that my eyes are sensitive enough to light that I will still need my eyes covered for another week or two. Which brings up another good point... thank you for not using a flash on your camera. Doctors say that my eyes are so sensitive, it can actually damage them if it happens too often. Mommy says that's also why a lot of my pictures are either dark or a bit hazy.
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May 25th
Mommy and Daddy left the hospital today, but they are still visiting me. My doctor was able to give them some really good news right before they left. I don't have to have my CPAP any more. He was able to take it off, which also allowed Mommy to see my little face for the first time ever. My CPAP was a lot like an elephant trunk attached at my nose to help me breathe.
They were also able to take out my anderson tube (the tube into my tummy) and we will see if I can start eating tomorrow. I was able to breathe entirely on my own until about 9 p.m. when I got really tired. I don't have to have the CPAP any more. I just have a small tube in my nose that is part oxygen and part room air.
Mommy and Daddy were so excited to get to see my face. Each time they take the lights off of me to take care of me (diaper, temperature, etc.), I am able to open my eyes and show off my entire face. Otherwise, I still have a little hat and special sunglasses covering my eyes until the bili lights get turned off for my jaundice prevention.
My doctor is saying that soon I'll be able to get those lights off of me but we're not sure quite when. He is guessing it will be another day or two. I am also going to be happy to have them off so I can get a little bit dressed up. Even though I won't be able to wear clothes yet, I will be allowed to have a bow in my hair.
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May 24th
Happy Birthday Mommy! I know this day has been hard for Mommy. She is still in the hospital and I had a really hard morning. I had a lot of gas bubbles in my tummy. The air bubbles were so bad they were showing up on x-rays and I could not get comfortable. My nurses helped me by putting in an anderson tube, which sucks the bubbles out for me. It made me feel a lot better.
Because Mommy is in the hospital on her birthday all for me, I had some help doing something for her. My nurses helped me make a card for her with my footprints and one of my hand prints. I was only allowed to do one hand because my other hand has an IV in it and cotton around it.
Grandma Scofield helped me give it to her and it was Mommy's favorite present for the whole day. She is even going to keep it and put it in our family scrapbook. She seems to be doing a lot better since I calmed down, too.
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May 23rd
My NICU offers a class for parents and other individuals who want to learn how to interact with me better. Mommy and Daddy went to that class today and it was amazing how much better things got. They are more aware of what they can do to help me and why I have so many restrictions on when I can be touched and so on.
My nurses are starting to fall in love with me and comment on how cute I am. They are impressed with how much of a fighting spirit I have. They also like to comment that for my gestational age I may be little, but I'm sure not sick. This makes my family feel a lot better.
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May 22nd
I'm already so strong! I overcame my first NICU milestone at 2 a.m. today when my doctors and nurses took me off of the respirator. They put me on CPAP to help my lungs expand but I am no longer on oxygen. Mommy and Daddy got to choose four people to be able to see me at any time in the NICU other than themselves. They chose my two Grandmas, Grandpa, and Uncle Seth.
Everyone is getting used to how they are allowed to interact with me. They will eventually get it, but for now it can be hard. I know I am loved by everyone who comes to see me. For those who don't come to see me because they are sick, thank you for keeping me safe.
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May 21st
Happy Birthday to me! Daddy attended my c-section and went with me to the NICU as soon as I was born. I was a really good girl about breathing right away and came out with good, pink color. Mommy was so afraid that I was going to start out blue or purple.
Mommy got to see me for the first time about an hour and a half after I was born. If you visit my photos, our first family picture is there with Mommy in a bed and Daddy sitting with me. Daddy, both Grandmas, Grandpa, Uncle Seth, and Aunt Debbie were able to help out Mommy after the surgery too.
By the way, thank you Uncle Seth for my first elephant. He keeps me company in my bed at the NICU. He has to sit in a plastic bag to make sure I don't get sick, but my nurses all comment that they love it as much as I do.
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