Maggie Follow Up

The weekend we got home from the hospital was spent cuddling, laying low and watching basketball. Miss Maggie was spoiled with care packages, love and tv shout outs from ESPN announcers and Coach Prohm during the basketball games. 

The Monday following Maggie's ordeal, we had a follow up with her pediatrician here in Ames, Dr. Patten. We love Dr. Patten, she was a wonderful support while we were in the hospital by calling daily, text message check ins and giving up some insight to tests being run and lingo being used by doctors. At Maggie's follow up, it was discovered she had another ear infection (of course) but the antibiotics she was on would clear it up. Dr. Patten decided to consult with Blank Children's Hospital and some fellow pediatricians on Maggie's chart history and recent hospitalization, but in the mean time, we would do blood work to test her Prevnar13 (pneumonia) vaccination and check her immunoglobulin levels. 

Her blood work that was sent to Mayo Clinic revealed that Maggie was borderline immune deficiency and that her body rejected her Prevnar13 vaccination. She received three doses of the vaccination her first year of life and is supposed to protect her against 13 types of pneumonia. Her body was only protecting her against two. After consulting with an infectious disease specialist at Blank's, they decided to give Maggie a vaccination that they give the very sick (one kidney, cancer patients, etc) that would protect her against 23 strains of pneumonia. She received that new vaccination mid-December and we will check to see that her body accepted in in early February. At that time, we will also re-check her immunoglobulin levels.

Maggie also had an EEG done in mid-December. Standard for young kids that experience complex seizures like Maggie did. All turned out fine. 

So what do we know now? Well, Maggie will be prone to febrile seizures and we are now equipped with what to do if her fever spikes like that again. 104* temperature is Maggie's trigger point. We also know that her history of ear infections, sinus infections, many bouts of croup, constantly getting the common cold, is explained and we aren't crazy thinking she's always sick! Her immune system just isn't up to par and is infect a crappy one! But you know what? I would take this over anything else. It could have been so much worse for her and we are incredibly lucky that with her weakened immune system, that she never got this sick prior. 

Maggie's Scare

It all started back on Saturday, October 28 with Maggie coming down with a fever pretty quickly and a barking cough. While Matt was at work as Iowa State had a home football game, I took Maggie to Urgent Care where she was diagnosed with croup and given antibiotics. This was her third round of croup in 18 months. 

On Sunday, November 5, Matt was again working and we were back to the doctor with a horrible ear infection for Maggie. Given additional antibiotics and drops. To note: yes, her tubes are still in place. Maggie was done with antibiotics that following Saturday. 

The evening of Monday, November 13, Maggie wasn't herself. Just lethargic and low grade fever. Luckily, the following day would be spent with Nana, so extra cuddles should do the trick I thought. Matt left that Tuesday for what was supposed to be a week long trip to South Carolina for a basketball tournament. He left and that night we were in After Hours Care as something wasn't right with Maggie. She didn't have a fever, but just again wasn't herself. My mom said she spent the entire day just laying around, no life to her. The doctor said she clearly looked like she wasn't feeling good, but wasn't running a fever, ears and throat looked fine. He said if she gets a fever above 103, bring her back. 

Wednesday, November 15 was the start of a nightmare. I received a text from Amanda that while Maggie was fine most of the morning, she quickly got 104 temperature and all of a sudden wouldn't stop crying. I got to pick her up at 12:30 and called the doctor where we were able to get in with Dr. Smith at 1:50. The hour between picking her up and going to the doctor was spent rocking her and trying to get her temp down with Tylenol. She was on fire. 

We get to the doctor and while getting checked out, her temperature is 104.5 and he orders nose swab to check for the flu (negative), chest x-ray and labs. He said she looks sick. We go to get x-rays where we FaceTimed with aunt Alaina in the waiting room before the labs. Trying to get her to sit for the x-ray was rough because she was exhausted and just limp. I carried her to do labs where it all went down hill. She gave the urine sample and cried that she wanted to walk, so I let her. She just collapsed out of exhaustion and was crying. I picked her up to sit in the chair for her blood draw. We had the sweetest lab tech that I will never forget. Maggie grew more limp and just fell back on me. I said "something isn't right." The lab tech agreed and suggested we go back to the Peds room and do the blood draw from there. 

It was when I laid Maggie on the table that she became unresponsive. I kept saying "this isn't right, something is wrong" all while trying to get Maggie's attention. Her eyes were rolling, eyes closed and body limp. The lab tech yelled for help when three doctors (Smith, Hartwigsen and Paschen) ran in with nurses and told me to step out. Maggie was having a seizure. I lost it. Matt was in South Carolina and I called him. I had no idea what was going on, but I was scared and needed him to know something wasn't right. When I hung up the phone with him, I could hear a doctor say "alright, it's been five minutes" all while everyone is yelling her name, ordering medicine, getting ice packs and taking her clothes off. During all of this, that sweet lab tech is standing there with me rubbing my back as I cry and call Matt. Gosh that lady was a saint to me at that moment. It was then I needed someone and immediately called my mom. By the time my mom got there, Maggie had been seizing in the room for over 20 minutes (they believe the start of the seizure started when we sat down for the blood draw) and we were told she needs to get to the ER immediately. I was put in a room next to Maggie while our family pediatrician, Dr. Patten, came and checked on Maggie and talked me through everything. A stretcher came and Maggie was wheeled over to the ER at Mary Greely Hospital while still seizing. 

We get to the ER and the team got her first seizure to end after 30 minutes. The time in the ER was a blur to me between answering questions, asking of family history, calling Matt and trying to wrap my head around watching my daughter lay there non-responsive. At that time, they had given her the most they could of a particular seizure medicine and were manually pumping oxygen all while they have her hooked up to IVs. The ER doctor told me we needed to get to Blank Children's Hospital in Des Moines and he ordered an ambulance and team to get to Ames ASAP to transport Maggie. It was after he made the call that Maggie's left side started twitching and the start of a second seizure was happening. They started a new seizure medication and because it would slow down her breathing, they needed to intubate her. To see your lifeless child laying with a breathing tube is truly terrifying and gut wrenching. 

My mom and Alaina went to our house to get me clothes while I followed the ambulance to Blank's. By this time, it is 5:30 p.m. and Matt has been told by work that they are working on getting him a flight back to Iowa first thing the next day. We get to Blank (Maggie before me as they went much faster with sirens) and I got to her room in the PICU as she was being hooked up to all new machines, new blood draws and getting the new team up to speed. In fact, they had already done a CT scan and an x-ray on her lungs by the time I got to her room. CT scan was to see if seizures were brought on by anything other than fever and the x-ray showed some fluid in/around her lungs. My mom and Alaina got there shortly after to sit with me and thankfully brought me something to eat. 

We had a team of nurses and/or doctors in our room every 30 minutes all through the night to check stats, administer new meds, etc. Even though Maggie was under heavy sedation and super drugged up, they had to tie her arms to the bed as when she got agitated from the nurses checking stats or doing blood draws, she would try and pull her breathing tube out. Oh and those blood draws....AWFUL! They did them every 10 hours and no lie, it took four nurses to pin her down for 30-45 minutes every single time. She was dehydrated and has horrible veins like her mama. Finally on the last day of the hospital, the doctor said enough and made the labs make due with what they got for her blood draw. Poor girl came home heavily bruised from her feet/ankles to her arms and hands. 

It was around 7:00 a.m. on Thursday that she started slowly coming out of sedation. I had the nurses, doctor and a Child Life Specialist all warn me what the next several hours would be like, but I had no idea it would be as bad as it was. If your child has ever come out of sedation from tubes or tonsils coming out, imagine that time 1,000 and lasting 10 hours straight. It was horrible. Imagine an angry, drunk toddler. She threw up, her body was limp and uncontrollable, she was hallucinating that there were spiders all around her and on the walls so she tried running (while falling) in her crib and climbing out. We would touch her and she thought it was a spider or water filling up around her. Nothing we could do would help her, she just needed to get the drugs out of her system. The Child Life Specialist tried to bring things to help, and it maybe lasted a few minutes. 

Matt arrived around noon and I tried my best to warn him about what he was going to encounter. Having him there was a blessing as I was near a meltdown. I held it together better than I thought, but once he got there, I just cried. I was scared and exhausted. After a few hours of Matt and I taking turns with Maggie, the nurse told us to go to the family lounge and take a 30 minute break. Upon coming back, we learned Maggie had a severe case of RSV. When she got admitted the night before, they started her on meds right away even though they didn't know what it was. Even though RSV is something that just works its way out of the system, it didn't hurt to have the antibiotics. 

In her new "crib"that protected her from climbing out and was fully enclosed. 

After being up since 7:00 a.m., Maggie finally fell asleep around 5:00 p.m. It was then that I went back to Ames to spend the evening with Emma and get some sleep. We didn't know how long we would be there, so the plan was that we would take turns being home with Emma to provide her some sort of normalcy. Luckily Maggie slept from 5:00 p.m. until the next morning. On my way back to Blank, Matt called and said the results came in and we would get to go home that day. 

What I came into on Friday morning before leaving. 

Other than being super tired, a little cranky and pretty weak, Maggie was back to "normal". The doctor came and spoke to us on everything Maggie had/went through: she had RSV and strep pneumonia. We were given antibiotics, instructions for home and told to see our pediatrician that following Monday. So at noon on Friday, we were headed back to Ames after a terrifying 48 hours. 

We couldn't have gotten through this ordeal without our caring, thoughtful family and friends that covered us with prayer and love. My mom, the saint she is, I can't even say enough about her. She was my rock when Matt couldn't be there. She is the most selfless person I know and so giving of her children and granddaughters. My sister who helped pack me a bag and constantly checked in. My dad who was in China on work travel and checked in, called and prayed hard. Jamie and Ellen Pollard who have gone through so much worse with James, made sure we were okay and taken care of. In fact, Ellen knew I would never ask her or anyone to come down and sit with me or bring me anything. So she said she "had an errand" in Des Moines and brought me fruit, yogurt, a muffin and sat with me during some of Maggie's worse. She was a God send in that hour. The Rutherfords and Lickteigs for the texts, group messages and hospital care packages. Friends, get friends like them and never let go. Blessed for their families and for our kids to grow up together. The entire men's basketball family from coaches to wives. Wow, did we ever feel the love. Again, text messages and shout outs from the games. This staff is simply the best and incredibly family oriented. Rhonda Hackmiller who had a special bag of treats/toys for the girls and food for the family. That woman is so thoughtful and sincere. The Anderson family, who without question took Emma that Wednesday evening and made sure she didn't miss a beat and felt like everything was normal. My work, Matt's work, so many friends and family members. It is true what they say, "It takes a tribe". It sure does and boy are we blessed. 

There are so many details I am sure that I am missing, but this is a high level overview of our 48 hours of hell. 

Pre-4: Emma

In September, Emma started four year pre-school back at St. Paul Lutheran. This year, she is going Tuesday, Thursday and Friday from 8:30-11:30 while doing before school care starting at 7:15.

So far, she loves it and can't wait to go back. In fact, as couple weeks ago she didn't have school for two days because of conferences and she was bummed. I wish that would be the case 10 years from now!

In just the two short months, we have watched Emma grow in independence and responsibility, along with all the other fun stuff pre-schoolers learn like holding scissors, working on their name and letters, identifying letters/numbers/shapes. It's so fun to watch the progress and how proud she is. 

Summer Recap.....in October

My mom asked me recently if I was done with the blog because I hadn't posted since Emma's birthday in July. Even if she is the only person that reads it, I should do it for my own memory and the memories of Emma and Maggie. So here we are in October.....errr, almost November, giving a brief update on how us Shoultzes spent our summer 2017.

Matt and I celebrated five years of marriage by getting out of Ames and going to a brewery and dinner in Ankeny. All while being back by 8:00 and in bed by 10:00....our kind of nights. Wouldn't want to do life with anyone else.

Emma spent four nights by herself at grandma and grandpa Shoultz house in Litchfield before Matt and Maggie came up for a few more days. Emma loved it and appreciated the 1:1 time with them. She even got to spend the night out at the camper.

I had a work trip in DC and got to spend the evening relishing in the beautiful history. I'd love to do this trip all over again as I clearly didn't appreciate it while on the 8th grade field trip.

We might have found Emma's sport: softball. She sure can slug them off the tee or being pitched too. 

Lots of park time in and around Ames.....

Quick trip to Clear Lake for the day so the girls can experience the lake life. Matt and I decided that a dream of ours is to have a getaway house up there some day. Note: DREAM.

I potty trained Maggie on July 6. Probably not the best timing as Matt was out of commission for six weeks post surgery, but it's done and she has done such a great job. She was two years and two months when we did it. While young, she was more than ready and showed immense interest. After a couple of weeks of random accidents, she's fully potty trained and the thought of being done with diapers forever is amazing! 

More time spent up at Clear Lake with dear friends. Third summer in a row we have done this and we look forward to it every year. 

Our bribe during summer months is "If you take a good nap, we will go see the horses." Almost always does the trick. 

We got rid of the pacifier on Matt's birthday after he asked her if she wanted to throw it away. In a moment of weakness, she said yes. It was a rough night and a rough few nights there after. But now, she's doing well and doesn't ask for her. Throwing away the paci though coincided with her getting out of her converted crib, so that weekend, the crib got put back together to keep her caged, I mean contained for a little while longer. 

Visited Litchfield before the craziness of football and basketball season got underway. The girls have a ball up there and love getting to see their cousin Maddy who they adore. 

Emma: Four

Our sweet Emma,

I can't believe that you are already four years old. There are times where it seems like just yesterday we were preparing for your arrival and then other times where it feels like you have been in our lives forever. Four just seems so grown to me. Yet you have been counting down to this birthday for what seems like months. Asking how many more months, then weeks and finally days until your birthday.

You have grown so much in the last year. Physically, you grew nearly four inches and gained four pounds. You are in the 92% in height, 40% in weight with a BMI of not quite 4%. You are a string bean for sure. You officially no longer look like a baby or even a toddler, but a little girl. Aside from the physical growth, you have matured (most days), learned new things and your vocabulary is one of sometimes a teenager. Thanks to three year pre-school, you can spell and write your name, can count to twenty and recognize shapes and some letters. Speaking of school, you loved school. You quite literally would push Nana and Maggie out the door at drop off. We were worried on how you would handle it, but you blew us away. We truly saw you shine this year and can't wait to see what the next year holds at four year pre-school.

Princesses are your LIFE. Elena of Avalor rules our house, but Elsa, Moana and Belle are close behind. You love to recite their songs and can recite quite a bit from their movies or shows. Dressing up is your absolute favorite. I think if we would let you, you would wear a princess dress all the time. In fact, that's all you really wanted for your birthday: Elena of Avalor accessories to go with the dress. You even asked for dresses and skirts for school.

While you love all things baby dolls and princesses, you also like to get dirty, play with worms and play sports. You actual have quite good coordination in soccer that we may have found a sport for you. Luckily with your dad's line of work, you and Maggie enjoy sports and watching them. Going to Iowa State basketball games is something you so looked forward and when dad is on the road, you like watching him on tv.

There is so much magic in your personality. You are incredibly kind, sincere and sensitive, but when you are mad, oooohhh are you mad! Your eye rolls, stomping to protest and the "that's not fair" are seen and heard daily. We have always said you were an easy baby and toddler, but I think the attitude of four's may rock us. But in a lot of those moments, where you just infuriate your dad and I, we have to hide our face from smiling because you are so darn cute. Luckily for us, you understand when you are in the wrong and always apologize, whether it's five minutes later or the next day. Sometimes you apologize for things you don't even need to apologize for or things I think that you have longed forgot.

I have no idea what this next year will bring, but I hope it is a year of fun, learning and the innocent happiness of being a kid.

Happy 4th, Emma Grace. We love you.

{E}: Four Year Pictures

"Darling, the one thing you have that nobody else has is you. Your voice, your mind, your story, your vision. So write and draw and build and play and dance and live as only you can."

{M} Two Year Pictures

Oh my goodness is this girl a ham, especially when a camera is involved. 15 minutes is what it took for this photo shoot and we could have been done after a few minutes. Thanks to Destri at D&Orfs for capturing Maggie's silly and scrumptious personality. Thanks are also in order to Maggie's favorite song, Bruno Mars "That's What I Like", that provided background music to loosen her up.