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2/16/2017 Latest post:
Our Sweet Willow is one heck of a FIGHTER! Being born 6 weeks early weighing in at 4 lbs 13oz of pure STRENGTH and endless WILLPOWER. After being born in Hudson Wisconsin they transferred her to Children's Hospital in St. Paul Minnesota for just under two weeks in the NICU while they kept a close eye on her feedings as she had a NG tube, some breathing issuses, and needed to be in her little tanning bed for her jaundice 3 failed hearing tests and issues gaining weight she dropped down to nearly 3lbs at her lowest. We got home and settled into our new "normal" life with now 5 adorable loving children. The first week home was exhausting yet WONDERFUL. Everything was going according to plan, when it all seemed to start. Willow had her FIRST of many BLUE FAINTING SPELLS, we were terrified and brought it up with her pediatrician but they didn't seem concerned so it was kind of reassuring that everything was okay. Shortly after the spells became more FREQUENT we also noticed that her EYES constantly watered and mucus would come out of her tear ducts. These spells and watery tear ducts continued through the summer into the fall (mind you every time I took her in for an appointment I brought these issues up) I was again reassured that these EPISODES were in fact called "BREATH HOLDING SPELLS" and that she might also have some issues with her tear ducts, they said if it continued to 6 months of age they'd look into the cause of it.
The CRISP windy October nights set in and we travel out as a family to our first High School football game to watch Sophia cheerlead. This is where I feel like all the LUNG issues started, Willow was all bundled up covered in blankets as I hold her tightly against me in her boba wrap. That night the a fever sets in and the CHRONIC COUGH started, we went into the doctor the next day and REPEATEDLY for the rest of the month because of her cough (coughing so hard she would puke) we were told it was just a cold and that it would pass, just to use the Albuterol nebulizer treatment that we had just got prescribed to us as needed, baby vicks, and steam from the shower. This was the FIRST of FIVE EAR INFECTIONS over the next 3 months. I kept taking her back once or twice a week (I'm sure they thought I was crazy)
November, here we are back in the waiting room as I hold my sick child yet again waiting for her name to be called hopeful that the Doctor will have a different thought on what to try next since nothing seems to be working, I again talk with them about her BLUE SPELLS and that they seem to be getting more FREQUENT the SICKER she gets. Again I was reassured that it was all in my head, that these "SPELLS" were in fact BREATH HOLDING. Willow again had a double ear infection and bronchitis this time. The doctor prescribed her a new neb treatment called Budesonide as well as Albuterol, and more antibiotics. This is also when we noticed she had ISSUES EATING (she'd only take a few bites of any kind of food and instantly throw it all back up) there was also no concern with this as well and the doctor suggested that we wait a few weeks when her "COLD" had subsided and try again. We went back the next week with no change in symptoms. Same stuff same issues over and over again.
December back at it right. . .I'm sure you guys kind of get where December is going all the same issues brought up the same way more ear infections same chronic cough that has not gotten better, more blue spells, eating issues, and one exhausted baby girl.
The Morning of January 9th, Willow had been up coughing all night as she did every night but this time it was worse. I woke up to our daughter choking in her sleep, choking on her own vomit because she was coughing so hard. She had choked and stopped breathing, i immediately flipped her over and started hitting her on her back to get her to start breathing, to clear the mucus, just to hear a cry. I heard NOTHING! I CONTINUED TO HIT HER BACK FLIPPED HER OVER AND GAVE HER MOUTH TO MOUTH as her little body lay limp in my arms she finally started breathing again. I was screaming and in tears. TERRIFIED OUT OF MY MIND. I rush into the other room to hurry Owen, Sophia, Hunter, & Lilly to get down stairs and get their stuff on so we could leave. I drop the kids off at school and daycare as I rush Willow into the ER in Hudson. They gave her a neb treatment, and sent her to xray. We sat in the room waiting to hear results. I hear the words again just a cold and bronchitis. As I'm bawling getting our discharge papers just not understanding how it could just be a cold we walk out the door. I set Willow's carseat into her base in my truck and give her a big kiss on her forehead and shut the door. I start to get in when I hear in a distance MISS! MISS! I look around to see who was yelling (not knowing it was at me) the doctor ran outside after us in the below freezing temperatures in just his scrubs to say "I THINK THERE'S SOMETHING WRONG WITH HER AIRWAY" you need to take her into the cities now. I start bawling, and said "thank you so much for taking that second look at her xray" hugged him got in my truck and looked up the number to the University of Minnesota and made the appointment for the next morning with a pulmonologist. That doctor was our saving grace.
January 10th Willow's pulmonology appointment at the U of M. We gave him every detail that had been going on over the past 8 months of her life. He was most concerned about her blue spells. He started to look her over check her lungs these are his words "she sound like a washing machine" "double ear infection" (this is 5) then he goes to look in her mouth and she has one of her spells and passes out right in front of him. No questions asked he admits her to The University of Minnesota Masonic Children's Hospital. We come to know that her lungs were nearly collapsed, she had pneumonia in both of her lungs, a bacterial infection on top of that, a 40% narrowing of her airway, mucus caked inside of her lungs, issues with eating, xrays, heart monitor (her heart stopped for 9 seconds) ear tubes, failed hearing tests, possibility of PCD (primary ciliary dyskinesia) CT scans, MRIs, swollow study, nasal biopsy, tubes after tubes down her nose, bloodwork after bloodwork, poke after poke. . . She was still happy through all of it.
We left with these medications: Atrovent, Budesonide, Hypertonic Saline, antibiotics, probiotics, ear drops, heart monitor.
January 31st were back at the pulmonologist. Cough is back in full swing, again soundin like a washing machine. He now prescribed an at home paulse oximeter, oxygen, suction machine, chest BD. We went home feeling hopeful.
February 6th: neurology appointment set up a EEG appointment for March 6th
February 8th we wind up in the ER at the University of Minnesota because she was up coughing with labored breathing. Our pulmonology team added prednisone to Willow's meds for 5 days (these were the best 5 days no coughing no nothing just one happy baby) leading up to our next hospital stay that wasn't to far out.
February 14th Valentines Day or day one of RSV and pneumonia all over again.
For I know the plans I have for you," declares the lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
Cystic Fibrosis and Primary Ciliary Dyskinesia are NEGATIVE! Thank the lord!
Still one VERY sick baby and no answers, yet we are hopeful.
Please continue reading in our daily journal from here.
We thank you all for your endless support, prayers, and love for our Sweet Willow.