Here is a picture I took of my sweet three-month old baby girl on February 13, 2012. She was babbling and sweet and I couldn’t help myself, I had to snap a picture.
It was probably the 45th picture of her I had taken that day.
Who am I kidding, it was probably the 110th picture, I take a lot of pictures of my kids. They think I’m so annoying. 🙂
Little did I know that 13 hours later I would be rushing her to the emergency room and 15 hours later I would almost lose her.
Today I want to share my daughter’s story with you.
My Hannah is charming, beautiful, already a comedian, and she is a bacterial meningitis survivor.
It happened so incredibly fast. She was acting normal all day and then at 11:00 at night she vomited and had a low fever. I just assumed she had the stomach flu. She slept through the night, which was normal, but the next morning she didn’t want to nurse. I just thought her tummy was still bothering her, so I didn’t push it, but I did call her pediatrician later that morning to let him know she wasn’t eating. He told me to bring her in if she didn’t eat within two hours. Almost exactly two hours later I finally got her to eat, so I didn’t take her in.
She was so lethargic and slept all morning and I just let her rest. It was Valentine’s Day and I had fun activities planned for my two boys. We made a fun breakfast and some Valentine Day crowns. I kept checking on Hannah every so often. I took a picture of her at one point and gasped when I looked at it. She looked AWFUL.
At 3:00 she started grunting when she breathed. I still thought she had a stomach bug and I thought she was grunting because her tummy hurt, but knew I had to do something. So I loaded everyone in the car, dropped my boys off at my neighbor’s house and drove Hannah to her pediatrician. I was still convinced she wasn’t that sick, that it was the flu, that it would pass quickly, but when the pediatrician checked her heart rate and blood pressure he told me to go straight to the emergency room. My heart started to pound and I felt sick to my stomach. My thoughts immediately go to RSV, because at that point that was the worst thing I could think of.
We got to the ER and they quickly ruled out RSV. So the next hour was spent trying to get an IV in to my poor dehydrated baby. My heart was breaking because I felt like it was all my fault she was so dehydrated, one of my main duties as a mother is to make sure she is nourished and fed. It’s amazing to me how quickly those thoughts of guilt came flooding into my mind. I replayed the morning in my head over and over again and kept thinking of everything I could have done differently. I felt bogged down and buried in guilt. Mothers! Why do we do this to ourselves!? I did everything I could have done and as difficult as it was I had to push those thoughts away so I could be with my daughter, in the present.
After awhile I could hear the ER doctor on the phone with Primary Children’s Medical Center. He was issuing a call for an Air Med helicopter. Never in my life have I experienced such a heart wrenching, awful feeling as that moment. It possibly was worse than when they delivered the diagnoses. Babies don’t get flown on a helicopter for the stomach flu. That’s when I knew things weren’t good. I have never fainted, but came seriously close at that moment. Looking back I don’t think I could have even comprehended that my little girl was coming dangerously close to losing her life. In fact, the medical team on the helicopter didn’t want to take off until she was stable. She almost didn’t make it on the helicopter, that is how close we came to losing her.
Things happened so quickly in the emergency room at Primary Children’s hospital that it seemed like I didn’t have time to breathe. They collected blood, urine, and spinal fluid for testing. That is when the diagnosis for bacterial meningitis came back. When we first arrived at the ER we were given a few scenarios for possible things that could be wrong with Hannah. The doctor told us he hoped it wasn’t meningitis and that is the outcome we were hoping to avoid.
They immediately found a room for her in the intensive care unit and she was rushed away and her little body was pumped full of antibiotics. Because they were unsure of the type of meningitis they wanted to make sure they covered their bases and to find which antibiotic worked for her. Time is of the essence with bacterial meningitis because of how quickly it can progress. I will forever be so grateful for the emergency room crew and the caring speed they used to get my daughter taken care of. Things could have turned out a lot differently if it wasn’t for the wonderful nurses, the vein team (they helped get an IV in her), the doctors, technicians, and other specialists that helped us at that dire time. They weren’t the only Earthly angels I would meet along the way, just some of the first.
She was monitored very closely over night and the next morning I sat in the room as the team of doctors made their rounds to her room. I didn’t understand half of what they talked about, but they all seemed so happy and optimistic because Hannah’s vitals were all stable and she responded to one of the antibiotics. We were able to stop giving her the other antibiotics. They also had lab reports back on which type of bacterial meningitis she had. She had Haemophilus Influenzae type A. Her body was responding to the antibiotic, but we knew there was a long road ahead of us. Even if she made it through everything alive, the conditions resulting from the disease are pretty devastating. Some of them include partial-to-total hearing loss, developmental delay, language delay, behavioral abnormalities, language disorders, impaired vision, intellectual disability, motor problems, ataxia, seizures, and hydrocephalus.
She was pretty out of it for the first few days, but each morning we were given good news, as the numbers we were tracking were looking good. She was on the road to a great recovery.
Finally one day she opened her eyes, but she was still glazed over and not quite herself.
She had a few CAT scans to make sure there wasn’t any abnormal fluid on her brain.
And she was given hearing test a few times.
Everyday Hannah was getting better and better.
Then one morning Hannah was herself. She held our hands, babbled, smiled, cooed, and she found her feet for the first time. We will forever cherish the memory of her “talking” to us for the first time in the hospital. We felt the power of Heaven so strongly in the hospital and this moment was one of them.
We had a few great days in a row and just as we thought she was almost better we had a set back. One night she had a fever and her CRP number went up (it was supposed to reduce by half each day). She had an MRI and the doctors found some abnormal fluid on her brain. The news was awful. The doctors started talking of possible neurological problems or behavioral issues in her future. After so many good days of great news, it was difficult to take it all in. She also was in a lot of pain. They had to increase her pain medications and they had to add additional ones to help her. The doctors faces were hard to look at because I could tell they were worried. They were kind and gentle, but had to tell me things realistically, and it was hard.
I went to church that day and as I waited for the meeting to start I began to feel sorry for myself. I was worried for the future and especially the unknown in Hannah’s recovery. Then a few nurses started bringing in some of the patients from the hospital to attend the meeting. There were children wheeled in the room still in their hospital beds, hooked up to all sorts of monitors. Some of them were cancer patients. It was a humbling experience and hard to keep the tears from flowing. As I looked around the room I realized I wasn’t the only one there with a story. There were other mothers, fathers, siblings, grandparents or friends of the patients in the hospital. Then I felt such a beautiful peace and happiness inside me. I truly was not alone. I knew in that moment that my Heavenly Father was aware of me, knew what I was going through, and that he loves me. It gave me strength to continue on.
Later that day the doctors decided to put tubes in her ears to see if that helped.
That night her fever was gone, her pain went away, and her CRP number decreased. The tubes worked! We were so relieved. Then two days later they told us she was well enough to go home. She still needed antibiotics for one more month and weekly blood tests, but things were looking up. I was given phone numbers for early intervention and she would need a hearing test in 6 months, but we got to leave the hospital with our baby girl. We were so incredibly blessed!
While we were at the hospital they gave her a PICC line to give her the antibiotic and to draw blood for labs. A PICC line is kind of like a normal IV, but you can keep it in for longer periods of time with fewer complications and it’s a little less invasive especially when you need to draw blood for labs. PICC stands for peripherally inserted central line, which doesn’t mean much to me, the easy explanation is that it is a small flexible tube that is inserted in a vein in the upper arm and ends near the heart. I was in charge of giving her the antibiotic each day in her PICC line and then flushing with saline and heparin every 12 hours.
As soon as we returned home Hannah became her old self almost immediately. I don’t think I appreciated this picture when I took it, but it now brings tears to my eyes because this picture was taken two days after we arrived home from hospital. She looks so good. How grateful I am for her great recovery.
Hannah is still doing really well. She is meeting all of her milestones on time and doing so well that she doesn’t need early intervention. She passed her last hearing test, and so far her doctors don’t believe there will be any lasting effects from the meningitis.
I learned so many things because of this experience, some of it is too personal to share, but if I can leave you with anything it is this:
1. We go through awful, miserable things on this Earth, but we can do hard things. With faith, prayer, and our Savior we can do seemingly impossible things. And those hard things can turn around and be our greatest experiences. We can grow and learn more than we thought possible. I would not wish an experience like this on anyone, and it’s something I hope to never go through again, but I can honestly say I would never trade this experience for anything. My heart has never felt so broken as it was in that hospital, but my spirit has never felt stronger. Don’t wish away the hard things.
2. Hold your children tight. Play with them. Take them to the park. Read to them. Snuggle them. Get off the computer, turn off the TV, put down the phone and be with your children. AND enjoy being with your children. They will not be little forever. This isn’t always easy for me, but then I remember that things could have changed for us in the blink of an eye and I would have been left wishing I had held me daughter more. Have no regrets.
3. Serve others. I am still so grateful for the many things people did for us while we were in the hospital. I never had to worry about my boys because they were taken care of. We had friends send us chocolate covered strawberries. I appreciated every kind word said to me on Facebook. I loved when my cousin, Michelle called with words of encouragement and love. When we got home we had warm meals from neighbors. We had friends take our boys for a few hours each day so Hannah could get some rest. We also had so many people praying for us. It meant the world to us. Don’t feel weird, just do something!
And just to show you how well my Hannah is doing today, here is a slideshow I made for her on her first birthday.
Have any of you known anyone with meningitis? Leave your story here!