Leigha had a number of tests run right away being in the NICU. She had high bilirubin levels so she needed to be under a blue light. She was born with way to high of Iron Levels where it is dangerous towards her liver. Born with the Sickle Cell Trait. She is anemic. She had to have a heart echo and it was determined she has 3 small holes in her heart. All these things wrong with her were being monitored in the NICU with blood for labs being drawn almost daily to make sure her everything was moving in the right direction and giving her medicine as needed.
She also was born with some problems in her hands. Some of her fingers wouldn't open up like the rest of them and her thumbs automatically tuck under her fingers and don't extend out unless we move them for her. She had to have splints made for her hands and thumbs to help train her fingers to do what they need to do. We will need to have her fitted for new splints as she grows. In hopes of her splints being able to train her hands to open correctly so we won't need to do any form of surgery for that. That all will be determined as time goes on.
While she was in the NICU they were trying to come up with a diagnosis on why she was born as a full term baby but born the size of a premature baby. They have still yet to determine why, all that we have been given is a pending diagnosis which is Neonatal Iron Storage Disease. They still are not 100% on if that is why she was born small with these complications or if it is something else.
We were able to take her home from the NICU on July 18th 2017. She was weighing 3lbs 14oz.
The first day she was home she started spitting up through her nose and mouth after feedings. After the first couple times we didnt think anything of it because babies spit up. When we had her first doctors appointment I was told not to worry about it and told babies spit up. She still was gaining some weight so the doctor told us it wasn't something that we needed to be concerned with.
On July 22nd at about 8:30 AM Leigha was finsihing up her bottle and being burped. All of a sudden she spit up and not all the spit up came up and she stopped moving and making any noise, she stopped breathing and turned purple. Her father took her and was doing all he could to get her responsive again. As I was calling 911. She finally after what seemed like forever started breathing again and crying. She was transported by ambulance to Sanford Children's Hospital in Fargo ND again. She was brought to the ER and once stable was transfered to Pediatric care. While she was there she would stop breathing for short periods of time and her heart Rate would go up. From those episodes happening it was decided to put her in the PICU.
While she was in the PICU she was put on full breathing assistance, feeding tube, and in a warming bed. They wanted her to rest and and gain her strength back as she lost weight using to much energy being at home and going through what she just went through. Her weight when she was put into the PICU was 3lbs 12oz.
It was determined the reason Leigha isn't able to keep down her food and continues to spit up is because she is reflexing everytime anything enters her stomach. When the food comes back up she isn't strong enough to get rid of the spit up in her throat so it sits there causeing her to choke on her own spit up. She has been put on 2 different medications to help with her reflexing and for a while it did help.
She was moved out of the PICU and able to be in Pediatric care. It was starting to look like we could almost see a light at the end of the tunnel. Until August 6th at about 10:30pm she was finishing her tube feed when she started to cough, then spit up started coming out of her mouth and nose. I held her up and patted her back while hitting the call light for the nurses to come in. She begin to stop making noise, stop breathing, and turn purple. All the nurses swarmed in as I backed away. I watched her heart Rate drop to almost nothing as they were trying to get her to breath again. Finally after what seemed like forever she made a noise and started to cry. She was stable again.
We were back at basically square one from when we came back into the hospital. The doctors decided to reevaluate things and the next day she was sent to have an ultrasound to look at her stomach, had an xray to look at her stomach and heart, and had labs be drawn that day as well. They then decided to put the feeding tube lower in her so it would bypass her stomach avoiding her being able to spit back up her food. She needs food to grow and she needs to grow to grow out of this reflexing, but she can't grow and gain weight if she can't keep her food down. So they hoped moving the feeding tube past her stomach would help her.
On August 7th at about 7:00 pm she had blood being drawn from her arm and foot. Right at the end of her last poke she began coughing and then started spitting up. She stopped breathing, stopped moving, and her body and face turned purple. We rang the nurse call light again and they all swarmed in as I backed away watching her heartrate drop down to almost nothing again. They finally stabalized her and I heard her cry. The doctors decided she needed to be moved back into the PICU and back on one on one care with the nurses.
She today is in the PICU weighing only 4lbs 3.6oz at almost 2 months of age. She is getting fed through a feeding tube and we still don't know if she will be able to keep her food down to avoid her choking on her spit up. The doctors have given us different options for her but none are guaranteed to fix it. We can wait it out and hope she grows out of reflexing. We can continue the tube feeds bypassing her stomach but that means she will be on continuous feeds all day everyday until they are confident she is big enough to not be reflexing anymore. We can also do a major surgery on her called "Nissen" which involves putting a knot in her stomach to stop her food from coming back up.
We don't have an answer on what the future holds or what we will decide for Leigha and this has been a long tough road. We are just thankful to have so many people praying for her and thinking of her. She needs all the thoughts and prayers she can get. We need her better and home.
- Chelsie Lankow
- Cheryl Ericson
- Colleen Brandt
- Ashley Meyer
- Kyle Blanchard
Organizer and beneficiary
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