After Hazel's first time in the hospital we made it one month before we ended up back at St. Luke's. It was a Thursday night - January 30th and she just wasn't breathing very easily - enough that we were questioning her safety and decided to get back to the ER since we were feeling more and more uncomfortable. We didn't want to take Hayley and Hudson along and were trying to get things together rather quickly when I decided to call my friend Heather Hennings (my former boss) who lives in Lawton to drive me and Hazel to the hospital so Josh could stay and get the kids settled into bed. Heather drove us to St. Luke's ER and we did a chest X-ray which was clear, blood work, a virus panel which was all negative. The new test that had not been done in December was a GI test - this showed severe reflux. The plan was to treat with Zantac and the problem would be solved. We were in the hospital Thursday night and Friday night and went home on Saturday. There was some mention of an apnea monitor to monitor Hazel's breathing since this was the second time we were worried and ended up in the ER - but Dr. Rehan, a local pediatrician, didn't think one was necessary as it sometimes just makes you worry more. We opted to follow her direction and went home with the diagnosis of reflux and the prescription to help slow things down.
After many nights of taking turns with Hazel, me getting up with her and trying to give her a bottle; Josh rocking with her upright in the recliner by our bed - Sunday night, February 2nd we decided that we were getting an apnea monitor in the morning. I called the next day and Dr. Roge gave us a prescription for the monitor - I went to Unity Point Home Health and was trained for about an hour on how the monitor works and what to do if Hazel quit breathing - a bit to take in but peace of mind knowing we could now try and get some sleep knowing that we would be awakened if she were in trouble. The machine went off a few times in the next week and we knew to check her color and if all was ok to turn off the alarm. Everything on the monitor was being recorded and the whole purpose was to be able to look her over if and when the alarm sounds. It went off quite a few times for low heart rate but Hazel always looked OK -
Monday - February 10th - one week later - was the day everything fell apart that led us down the road to truly getting Hazel healthy. As I was getting the kids in the car to go to Lisa's (our babysitter) that morning the apnea alarm went off. I knew the sound right away as it was loud and continuous and I hadn't heard it before. It was the alarm that you did not want to hear - and the little lungs lit up on the machine that I knew were not supposed to unless her breathing was not good. I had Hazel in her cars eat and getting her into the base when it happened - I looked at her and she looked sort of gray - not as bad as the Christmas night incident when she turned blue but just not the right color. I almost panicked but unbuckled her as fast as I could and moved her around and the alarm turned off - Good - I wasn't sure what to do but got Hayley and Hudson quickly into their seats and continued on to Lisa's so I would have another adult around. Hazel seemed fine and looked her normal color when we got to Lisa's and I debated on what to do next. I decided to trust that the machine was doing what it needed to and Lisa would let me know if anything went off. In the meantime I drove to work and called the nurse on the way to find out about the alarm and what I should do - I was told as long as it doesn't go off again that we may be OK. I hadn't yet gotten off highway 20 when Lisa called and let me know that the apnea alarm went off again. I turned around to go get Hazel and we drove straight to Family Healthcare to have Hazel checked over. They sent us on to St. Luke's for observation where they did another chest x-ray that was clear, and this time an eco-cardiogram that was normal of Hazel's heart. She was having some brady-cardia spells where her heart rate drops to the upper 80s so they kept a close eye on her. I decided to run over to work since Josh was with us at the hospital. When I was gone they decided that Hazel was getting dehydrated and the only place they could get an IV in was her head - I was so scared when I called to check on her and found this out - I left work immediately and knew then that I was not leaving her side. They had also moved her into intensive care because of the heart rate drops. We stayed in the hospital overnight - Josh and I both stayed with Hazel - and it was decided on Tuesday morning, February 11th that we would need to be transferred to Sanford Children's in Sioux Falls again - possibly for surgery as her reflux was deemed severe.
Tuesday, February 11th Dr. Roge made the order for transfer and Hazel was transferred by ambulance at 1:30pm that afternoon. I called my mom and she was so wonderful to leave work and come with me - little did we know how long she would be with us as this all unfolded. Mom and I followed the ambulance to SF. We arrived at Sanford at 3pm on February 11th and Hazel had one apnea spell on the way but nothing too serious. They tried doing a pneumogram that night to monitor her oxygen and heart rate but Hazel didn't feel well and didn't tolerate the test well so they stopped. She had another DFA test for viruses and all were negative. We were worried and unsure of the future, but relieved to be in a place where they assured us they would determine her underlying issue and be able to help her.
Wednesday, February 12th Hazel had a video swallow done and it was discovered that she was penetrating her airway as she drank her bottle of normal formula (thins). Some of the milk was getting up in her nasal area and it was the reason for her chronic cough. She may have even been aspirating a bit of milk. This made sense as she always seemed so congested and we never knew why since her viral tests were always negative and chest x-ray were always clear. One thing determined. She also had an MRI of her brain. It was hard to watch them strap her in to go into the MRI - she's just so tiny and helpless and sweet. Mom and I waited in the waiting area - very nerve wracking praying that there was nothing wrong with her brain that was related to the apnea spells. The MRI went well but there were a few very small possible abnormalities detected. An EEG was ordered to rule out seizures. The video swallow and MRI were both done in the morning and the EEG was done later in the afternoon. It was done in our hospital room with probably 30 probes glued to Hazel's tiny head. I held her and rocked her as she fell deep asleep so that he brain activity could be monitored falling asleep and also waking up. Wednesday was a scary day. Not knowing what the brain testing would reveal. Thankfully the EEG was normal which also ruled out any suspicions of the MRI.
Thursday, February 13th the pediatric ear, nose, and throat doctor, Dr. Munson, came in to do a camera probe down Hazel's nose to see the back of her throat. This revealed severe edema and swelling which was most likely caused by severe reflux but a PH probe was ordered to confirm this. The GI pediatrician, Dr. Doubledee did the pH probe which was a small tube that went in Hazel's nose all the way down to dangle in her stomach. The probe would record how often , how acidic, and how high the reflux was coming up the esophagus. We had to push a button every time Hazel coughed. Dr. Monson also noticed fluid in Hazel's left ear - most likely the culprit of her not passing her newborn screening in the left ear, and also that her tongue was somewhat tight - he clipped her tongue to enhance the range of motion which would hopefully help with her bottling - as that had been a challenge for her.
All the while - we were still waiting for the results and download from the apnea monitor that Josh and I had requested on our own - more Josh's decision than mine. That man who I love has some excellent daddy instincts :)
Friday, February 14 - (Valentine's Day) was a scary and thankful day all in one. As I kept nagging about knowing what information was on that little machine that had alerted us and gotten us on the track to determining Hazel's diagnosis we finally had some news. Dr. Julie Mayo - our pediatrician during this entire week revealed that she had connected with Sioux City and the apnea monitor had 52 apnea spells, 83 brady-cardia events, and 47 of them happening at the same time - Mom and I were floored. I was instantly angry and scared and upset - because I realized in that instant that we could have lost our baby girl and also that nobody had looked at that report or download earlier in the week when they should have - it was the final piece to the puzzle that our little sweetheart was very sick and needed surgery to stop the reflux from affecting her breathing and the fact that she was not gaining weight and growing like a healthy three month old should be. Surgery was decided after hearing that news and the results of the pH probe confirmed even more so that Hazel's reflux was severe and surgery would be necessary for her safety. Hazel was scheduled for surgery on Monday, February 17th for a Nisan Fundoplication to tie the top of her stomach so that no acid reflux could occur (the acid was causing her to not want to eat or take her bottle, her terrible cough, and the severe swelling in the back of her throat - she rarely spit up but the acid was coming up just far enough to jeopardize her airway and her safety- this also categorized her as "failure to thrive"), tubes in her ears, a feeding tube to be placed and a small procedure at the end to fix her herniated belly button.
I'm sitting here in tears writing this as I realize how much my sweet girl had to go through - what a nightmare for her - and for all of us. No baby should have to endure so much at such a young age or any age for that matter. I am thankful that she will not remember any of this and that she did so well through all of the testing and procedures that she went through.
We were relieved and thankful that an answer had been found as to her struggles. We were most alarmed by the news of the feeding tube as that is something ongoing that we would now be handling as part of her every day care. The staff was excellent and talked us through everything we needed to know.
We had a long weekend of waiting but knew that we had Hazel in good hands and that things were going to start looking up soon.
In the midst of all of Hazel's news we were very lucky to have Josh's parents helping with Hayley and Hudson, mom able to be off work and staying with me, and Josh able to continue working as we weren't sure how long we would be handling her issues and exactly how things would go. I was so happy that Joe and Kayan brought Hayley and Hudson up for the surgery -I missed them terribly!! They arrived on Sunday night - It was also such a comfort to have my mom and dad there and Jill and Kim around too. Kim was fun to see each night since she lived in Sioux Falls - it gave mom and I a break from the hospital from time to time and she brought dinner most nights :)
Monday, February 17th was the big day. Josh and I were both nervous - sick to our stomachs. They came to the room to get Hazel around 9am. We all went over to the surgery building - (Me, Josh, Mom, Dad, Joe, Kayan, Hayley, and Hudson) her surgery was scheduled for 10am. The process was very organized and went quite smoothly. We were in a holding room for a short time before they took her down to surgery. We waited patiently and were allowed to see her about 11:45am. Josh didn't feel well as he gets worked up easily at big events and his anxiety kicks in making things even more difficult for him but I was able to go up to recovery and be with Hazel as she woke up -she looked pretty good and the nurses were all so sweet- we watched carefully her heart rate and oxygen levels. Josh and I spent Monday night in the PICU on 2nd floor - that afternoon Hazel had a couple of apnea-like spells but we were assured that they were somewhat common as babies come out of anesthesia. She was on a very tight schedule of medicines to keep her comfortable. We stayed up as late as we could watching her - it was a night I will always remember as Josh and I hadn't had a lot of time together in the past few months and it was nice to just be there together - it was also the 1st night of the Tonight Show with Jimmy Fallon. I figure someday when he retires from the show and we are old we'll remember the first night of his show and exactly what we were doing :)
We spent Tuesday and Wednesday of that week learning to tube feed Hazel, vent her line, and how to do tummy time with her button in place. Mom was such a champ - and we did well as a team taking notes, asking questions, and learning how to take care of our little sweetie. We got to go home on Thursday, February 20th - with oxygen, with Hazel only allowed to take thickened formula by mouth, and with home health visiting us twice a week. I remember being so overwhelmed at how this would all work out - taking care of Hazel the best we could ; plus the fact of having Hayley and Hudson at home that need our love, care, and attention too. I was thankful to be going home - but never imagined leaving the hospital with Hazel attached to oxygen, her apnea monitor, and a feeding pump. We got home , settled, and took one day at a time. Thankfully my job is very flexible as I had been off quite a bit since bed rest at 35 weeks, maternity leave, and two other hospitalizations - but Mom and Dad agreed to have mom be our nanny for 3 weeks so Josh could keep working - the length of time the surgeon told us that Hazel should remain at home and very careful so her button incision would heal correctly. We are so thankful for mom's help and support through everything, dad making sure that mom was with me, and Josh's parents for helping with Hayley and Hudson - plus the support of our siblings :)
Enough for this post - I think I included everything I wanted to - I know I won't forget this ordeal but wanted to document what I could from all the notes I took while at Sanford. We are so thankful for the care we received, for God taking care of us and helping us be attentive parents, and for Him allowing us to be Hazel's mommy and daddy and leaving her here on earth with us. We will take very good care of her and we love her so so so much!
