One fantastic speech therapist who was with us from the beginning.
20 days of supplimental oxygen
One now happy and healthy baby girl who is so lucky to be alive ❤️
And probably a lot more things that I don’t remember.
Looking back through this whole experience, what I cannot quantify is the blessings, tender mercies, and absolute miracles, from hundreds of prayers on her behalf.
We left the hospital successfully last night. She and I are staying with a friend right down the street for a few days until the kids’ fevers are gone.
Before I even tell you about the day I need to say thank you. Thank you for reaching out, thank you for offering to help, thank you for the visits, thank you for the prayers and good wishes. I feel very supported and taken care of. I also want you to know that this time around having Georgia admitted to the hospital for Respiratory Distress is not nearly as scary as it was with Lucas. I feel confident in my knowledge, my experiences and my ability to advocate for her. I also trust the team of doctors and nurses that are caring for her. They listen to me and treat me like a team member not an opponent.
Wed Jan 22
After a long night, the day started with vitals.. temperature, blood pressure, then listening to her lungs and heart. “Rounds” are typically first thing in the morning but the floor that we are on is very busy so that got pushed back.
The respiratory panel from day one was negative and they didn’t know what is causing her to be sick so they decided to be extra cautious and move us to a private room to prevent her from possibly getting a virus from another patient.
The cystic fibrosis test was bumped up from 2pm to 10:30am. They stimulated the sweat glands on both of her forearms and attached a collection device. She is quite the sweaty baby already so they were able to collect enough sweat from both arms in less time than they were expecting.
Around 2pm we finally had “rounds” where we get to talk with the team and make/go over a plan.
They had not yet received CF test results. Their top priority was to see if she was indeed aspirating while nursing. The process for that involved a speech therapist consult to determine if they recommend a swallow study.
Second was to continue to explore the Asthma treatment. The doctor listened to her lungs very thoroughly before and after an Albuterol treatment and determined it was helping but it wasn’t enough yet. She needed stronger/and more frequent steroids to help relax the muscles in her lungs that were causing the wheezing. He replaced th flo-vent and singular granuals with the oral steroid Prednisolone 2x a day and upped Albuterol inhaler to every 2 hours.
The next time she nursed the speech therapist sat and observed and chatted with me about her feeding history. We talked about the coughing and gagging while eating, when it started and how often it happens. She determined from her observation that it appeared Georgia is swallowing safely and not aspirating. But just to be 100% sure we should to a swallow study. By that time it was late in the day and the test got scheduled for Thursday.
Before bed I finally got to shower and got to give her a bath just like she loved so much at home and put her in new clean clothes (thank you Aubree!!)
Night time was pretty difficult because of the order to give Albuterol every 2 hours. It would take 15 minutes to give the medicine and calm her down, 25 or more if she needed to eat too. Then after getting her back to sleep in her bed I would lay back down and try to fall asleep again. A little bit about me: falling asleep is not my specialty so I would get about an hour to an hour and a half of sleep before they would come back in and do it all again. About two times during the night they came in in-between the two hours to check vitals. This was all night long until shift change at 7:30am.
Thurs Jan 23
During rounds this morning we were told the Cystic fibrosis test was Negative! This was great news! They decided to reduce Albuterol to every 4 hours with the option to use the nebulizer when she is sleeping so we can disturb her as little as possible.
Next thing on the docket for today was the swallow study. That test is done by having Georgia drink Barium (an x-ray contrast liquid) from a bottle while watching her through the x-ray machine. This allows them to watch where the liquid is going and what her body is doing as she swallows. This was not an easy test for her since 99% of the time she nurses. And when she does use a bottle it’s only breastmilk. They sweetened the barium with the equivalent of snow cone syrup and we were able to get her to drink about an ounce and a half from a very low flow bottle nipple. They got as many images as they needed without reaching the radiation threshold.
Once back in our room we reviewed the results. Based on what they could see in those few minutes she was not aspirating the liquid. She did however have a delayed trigger. This means that the part of her throat that closes of the esophagus is a bit slower than it should be. Leaving it slightly open fluid passes by. The speech therapist said that means she is at risk of some aspirating but does not aspirate every time. In her opinion regular aspirating was not the the cause of her ongoing respiratory issues.
We were both relieved and confused by these results. Of course we don’t want her to be aspirating, but it seemed like the most likely cause of this extremely long bout of bronchiolitis.
This afternoon we did an oxygen flow test during her sleep to see if she still needed to have the cannula. We reduced her flow from .5 liters to .125 liters. After just a few minutes her oxygen went from mid 90s to mid 80s. It was clear that she still needs it.
What’s next?
Well I don’t have a for sure answer until I talk to the doctor again. But what I think the plan is from what we have talked about is that they want the pulmonologist to weigh in again, now that we have all the results back. They’ve talked about possibly an ENT consult as well. We will make another game plan at rounds tomorrow morning.
The bad news
We have no clear answer as to why she has been so sick for so long… Yet.
I have no idea when we will go home.
The good news!
She is stable.
She does NOT have cystic fibrosis.
She is nursing and wetting diapers great.
She hasn’t needed an IV.
Matt is rocking the stay at home Dad thing with the other kids.
Reinforcements are on their way! Matt’s parents will be here tonight so he can have some help and hopefully go back to work tomorrow. My mom is coming next week to help us all continue to recover.
We have the very best team of doctors and nurses working their best to help our sweet Georgia Peach. Thank you again for your continued prayers and support on her behalf.
As I lay here with the light of the monitor, the faint tick of the clock and the muffled conversations going down the hall it is finally calm in our room, and I can ponder the day and how we got here.
Over the weekend it was becoming obvious that her condition was not improving. We noticed that her color was starting to change during coughing fits and when she was sleeping. Matt made a comment to me about how he felt that a hospital stay was in her near future. I cried. I panicked a bit. Then I made a plan. I needed to monitor her oxygen levels to know when she needed to go in, and I could have proof so they couldn’t turn us away.
Monday night we bought a owlet oxygen monitor, but couldn’t get it set up. My sweet friend Alison came and held Georgia all night and she and I got to sleep more than we have in months! I don’t think I would have handled this day as well without that sleep! She is an angel.
This morning I got the owlet set up and working. Her oxygen was around 89% Within minutes of falling asleep an alarm went off. Low Oxygen. That means it dropped below 80%. So I rubbed her head and chest. Her numbers went back up to the mid 80s this happened 11 more times in an hour and half. So I called the pediatric pulmonologist, they said take her to the ER for monitoring. Then they will decide if she needs to be admitted.
I eliminated some steps and decided to take her to the primary children’s hospital ER in Salt Lake, because if she was going to be admitted that’s where I wanted her to be.
Check in, triage then ER room. I tell the same story to everyone who comes in (and there were A LOT) She’s been sick for nearly 2 months. Her stats were dropping when she was asleep. She needs help, we need answers.
Monitored her for about an hour. Her oxygen would not stay above 87% while she was awake they decided to give her a nasal cannula with oxygen, and run another respiratory panel. The results came back negative again. The ER doctor came in and told us that usually they have bronchiolitis kids just stay overnight then send them with an oxygen tank to get better at home. But because she has been sick for so long he wanted to have her stay and do more tests.
They watched, listened and asked questions eventually coming up with a game plan for the next day.
Swallow study first, then CF test. A swallow study checks to see if she is breathing in small amounts of milk when she is nursing. Treatment for that is very wide range.
They did an EKG, they check oxygen all the time, did some bloodwork and spoke with another doctor about the plan. We will likely be in here a few more days as they promised me they would figure it all out.
Still no answers but she needs Oxygen and she definitely is the happiest sick baby they have. Thank you for your continued prayers. We hope this can get resolved soon.
2019 was another big year for us. Starting the year in our new-to-us old home making remodel plans and an unexpected but much celebrated pregnancy. Stephanie got baptized and was supported by many friends and family. We went to Legoland and the contractors started our remodel. We lived in several different places (hotel, Air BNB, friends and family members houses) while they took apart and rebuilt our house. Everything always took longer than expected. In April we went to Arizona for Allie’s Baptism.
In June we moved back into our much unfinished home with no kitchen, no flooring and one functioning bathroom. The kids finished their first year at a public school Franklin Discovery Academy. We took a much needed family vacation back to California and loved it. We came home and it was our turn to do the projects on the house.
Summer was full of lots of play time with friends and lots of projects. We received so much help from family and friends in many, many ways and we are so grateful. We couldn’t have gotten this far without it. One such person was around so much and had such an impact on our family, He is all Drew talks about still. He says his name dozens of times a day. Uncle Bennie. Even though my Grandma’s brother hadn’t seen me or probably even thought much about me since I last saw him 15 years ago, He showed up and helped. He helped with installing flooring, replacing the subfloor, irrigation, excavating and leveling the backyard, tree removal, getting up early picking up multiple trailer loads of bricks by hand, preparing and pouring our cement patio.
Baby day!
At the end of August Georgia made her quick arrival after a very physically taxing and stressful pregnancy. She has completed our family and filled us all with joy and awe. She is beautiful and perfect.
Fall started a new school year, and the season of sickness and surgeries. Matt had a surgery to fix four issues in his sinuses and is happy to report he can breathe through his nose MUCH better now.
First day of a new school
Georgia has got bronchiolitis once a month since birth. Thankfully she was healthy enough in November She and I made a quick trip to California to celebrate the life of my Aunt and visit with family. Then the following weekend was her Blessing day. We had many family members in town to participate and celebrate this day with us. It was a beautiful experience as our sweet last baby was surrounded by loved ones and her Dad gave her a special Blessing. We continued to celebrate this gift of life at our home with a dinner of Thanksgiving. That weekend and days following filled with family and friends were so wonderful and filled our hearts with so much joy and gratitude.
November 27th Josh and Lucas had surgery to have their Tonsils and adenoids removed. That was a very difficult time. The boys were in lots of pain all day and all night for 2 weeks. At one week after the surgery Lucas had a tonsilar bleed. A crazy rush to primary children’s hospital in salt lake, He lost a lot of blood and needed to go back into the Operating Room to stop the bleeding and pump the blood out of his stomach. He was such a champ and had no fear. It was a very long night and our sweet friend Wendy came to our aid no questions asked. She stayed up into the wee hours of the night and took care of all our other kids, and her husband Brian brought Matt up to the hospital so we could be together with Lucas. We are so thankful for them.
In mid December just as the image of Lucas coughing up blood was fading out of my mind it was time for a few more projects to get our house ready for Christmas. We were very selective this year and didn’t give our kids toys. They got things they need and gifts of family fun and memories to be made.
Finally on the 28th of December for the first time in years Matt and I were able to attend the temple. It was extra special because it was our first time in the Salt Lake Temple and it’s very last session before it is closed for 4 years for renovations. It was nice to be together in such a special and beautiful place. I really miss spending time in the temple. I am grateful that we have moved to a place were they are so easily accessible to us as a family with young kids.
We spent our New year’s Eve in service to friends, visiting some elderly friends and seeing some spectacular Christmas lights. A perfect way to end the year.
We had a big year full of many blessings and many trials. We have learned so much and grown closer as a family. We look forward to a New Year, and growing closer as a family and even closer to Christ as we study the scriptures and follow the teachings of President Nelson.
Love,
The Burk Family
Enjoy some other pictures from our year year
Some of our other amazing helpers!
the kids enjoying summer break!
summertime California trip
spontaneous viewing of the 4th of July fireworks at thanksgiving pointSummer was also full of dogs. lots and lots of dog sitting. flooring is done and cabinets are waiting in the background to get installed We love our gummy! she spent many weeks with us after Georgia was born.Visit from Grandma and grandpa burkTrip to park city to see the hot air balloons with Grandma and Grandpa Apple, Uncle Scott and Harmony . Helping Daddy refinish Stephanie’s new bunk bed that we got for free!a walk in the fall with my boys Georgias Baby blessing
Stephanie and Joshua had a Christmas concert at school. Their music Teacher Mr. Woodruff accompanied them.
Family photo in the snow on the last Sunday of 2019
Building the Burks 