UPDATE: I remember when I first found out about Lindsay's condition, I looked everywhere online for at least one success story. If you are here, and continue to read our blog, you will see that Lindsay is definitely a success story! She's now two, and doing GREAT!! She is sassy, a smarty pants, and so much fun to be around. You would never know that anything was wrong with her. Good luck if you are in a similar situation. Feel free to comment, and I'd be happy to answer any questions you may have.
It is amazing how fast your life can change. I just want to start by saying thank you to EVERYONE who has fasted, prayed, and helped us during this challenge. We love you so much and really appreciate all that you have done! I have been amazed at the hand of the Lord throughout this whole thing. We have had countless tender mercies and little miracles and we feel so blessed. So, here is the story of our super crazy week.
(Lindsay at 2 weeks...the day before all of this began).
I took Lindsay in to her 2 week wellness appointment. Dr. Burnett started by checking feet, legs, etc. working her way up Lindsay’s body. When she felt Lindsay’s head her face dropped and she said we needed to get to Primary Children’s for an ultrasound of her head within 48 hours. She said that her soft spots were full and poking out, but she didn’t say what that meant, only that she was very concerned. I got home and scheduled the appointment for first thing the next morning. I didn’t sleep much that night, and did a lot of crying.
My mom, Lindsay, and I got into Primary Children’s at 8:30, but they had us down for a CT instead of an ultrasound. While we were waiting for our turn my mom saw her cousin Dr. Boyer. He was so nice and said he would be reading Lindsay’s ultrasound. By 9:30 they had things worked out and we headed into the ultrasound.
We looked at the picture on the monitor and Dr. Boyer found a mass in Lindsay’s head that was over ½ the size of her whole head (about 7 cm). He said that it was either a cyst or a tumor and he wanted us to get in for an MRI to determine which it was, and if there was cancer in there. He also said that we were really lucky that Dr. Burnett caught the swelling and sent us in. We were supposed to get an appointment for later in the week or early next week, but Dr. Boyer helped us out and got us in for a same day MRI. He also said that we were really lucky to live so close to Primary’s and if we lived in a surrounding state (Colorado, Idaho, Montana, etc) we would have been on life-flight to head to this great hospital.
I called Darin to give him the update and have him get off work. Meanwhile I was a wreck crying my eyes out, and was so glad that I had my mom there with me. Lindsay had to fast until the ultrasound, but she didn’t seem to mind.
Darin came in and we headed over to get Lindsay’s IV put in. While we were waiting I saw my friend Jane Tanner who was the head nurse that would be with Lindsay during the MRI! It was another blessing and comfort to have her there! She was so professional and made everything more bearable.
It was REALLY hard to watch Lindsay get the IV, then watch them sedate her, then watch her tiny little body go into that huge machine for the MRI. It was awful sitting and waiting while she was in there. I was very emotional, but it was really nice to have Darin there with me. I really don’t think I could have done it without him!
When Lindsay came out of the MRI we sat and watched her as she slowly came out of sedation. While she was still sedated Lindsay stopped breathing for a second and they had 4 nurses working on her. It killed me to see my little baby girl with wires all over her body and an oxygen mask—which later became an oxygen tube.
Dr. Boyer came back down to visit us and he looked over the MRI and Lindsay had a cyst (not a tumor and no cancer!!) He also said that she was going to need surgery and he would recommend Dr. Kestle. Dr. Kestle came down and showed us the images from the MRI, explained what was going on, and what our options were. We found out that she had an arachnoid cyst with hydrocephalus. The cyst which was taking up the majority of her brain was blocking a passage that allows cerebrospinal fluid to exit her head through the spine and that fluid kept flowing into the cyst which was making her head swell.
Our two options for surgery was #1- to puncture holes in the cyst and hope that the fluid would flow back to her ventricles and the passage would reopen and the fluid would be able to pass through. Option #2 was to put a shunt in her brain that would be connected to a tube that would allow the fluid to drain into her stomach. Dr. Kestle told us he wanted to go with option #1 with #2 as a backup if it didn’t work. We also decided that would be the best plan.
Dr. Kestle said that he could do the surgery on Wednesday (6 days away). I asked if there was anything sooner and he found an opening for the next morning at 7:30am. We said that we’d take that spot, which worked out really well since they had to keep Lindsay overnight anyway to see that she recovered from her sedation because she is so small.
We hung out in recovery for a while because they weren’t sure if they were going to put Lindsay in the Infant Unit or the Neuro Trauma Unit, but we ended up in the IU. Only one parent is supposed to stay overnight, so Darin headed home around 9:00.
Lindsay had to start fasting at midnight, and boy did it make for a LONG night! I felt so bad! She kept crying and looking at me like, “mom, why won’t you feed me?” Besides not being able to eat, Lindsay's oxygen tube kept falling out of her nose and she hated that. Needless to say, we both did a lot of crying that night.
Darin was back in about 7:00am, just in time to meet with the nuerologist, then the surgeon, then the surgeon’s nurse, then the anesthesiologist, then a crew came up to take Lindsay to the OR. We got to the doors of the OR and we had to say our goodbyes. As we walked away I started bawling again. It was a long 3 hours of surgery, but it was heaven when we got to see our precious little baby again!
They were planning on sending Lindsay to the NICU for recovery, but since she did so well during surgery, once she was breathing on her own again they sent us back to the IU. We talked to some doctors about how everything went and since Lindsay was still coming out of sedation Darin talked me into going home. When I got there I saw my water bottle that I would drink from whenever I would feed Lindsay, and for some reason that totally set me off, and I started bawling again. It was so hard to come home without my baby. Although it was hard to be home without her, it was nice to take a shower since I hadn’t in 3 days! And sweet Darin made me a nice warm bath to relax in.
(Holding Lindsay for the first time after the surgery).
I saw Matthew for the first time in 4 days. That was a hard one, because I only got to see him for a few minutes before I had to leave again. It is so hard to be put in a situation when you can’t be with all of your family. It is a constant lose-lose situation.
Lindsay had a hard night, not keeping her food down, so they gave her some Zofran which seemed to help. In the morning we talked to some people from the Neurology department and they said if everything looked good we could go home that same day.
A few minutes later we went in to get her CT scan to see how everything went. They didn’t have to sedate Lindsay for the CT, but it was still hard to see her little body again in that great big machine. They let us stay for the CT, but we had to watch from behind glass because of the radiation.
They read the scan and said that her skin looked good, but they couldn’t tell if the passage had opened. They also saw a little bleeding in her head that they were a little concerned about, but they thought it should clear out. And although her head felt good, they said they wanted to keep us for one more day. The rest of the day was spent with watching TV, feedings, and visitors.
Saturday was another rough night. We got a new “roommate” in our room, and boy that kid was a SCREAMER!! Lindsay slept right through it, but I spent most of the night wide eyed. Lindsay also had a rough night of throwing up. Darn!
Neurology came to check on Lindsay, and again her head felt good, and was shrinking in size, but because she wasn’t keeping her food down we had to stay another day. We went to church at the hospital, and it was fast and testimony meeting. The spirit was so strong in that tiny little branch, and the veil felt very thin. I felt like there were hundreds of angels surrounding these little ones, and you could sense all the prayers for each of the families there. It was so nice to hear the faith and testimonies of those parents going through similar experiences. It brought a peace, comfort, and joy. We felt so blessed as we knew of so many that were fasting on behalf of our little Lindsay. We enjoyed the company of more visitors that helped break up the day a little more, but it was still a long day of waiting. Lindsay kept all of her food down after 1:00.
Lindsay kept all of her food down through the whole night, and all morning too! Neurology came and checked on Lindsay, said everything looked good, decided not to do another CT, and gave us the OK to go home!! As the nurse was preparing discharge papers Lindsay threw up again! Grrr!! They said we would only have to stay for one more feed and if she could keep it down we could still go home that day. She successfully breastfed and kept it down for an hour, so we headed home! I felt like we should be having a parade and big celebration as we left the hospital! I was SOOO excited to be home together again with our whole family. Unfortunately, it was one of the worst days since this whole thing began. Lindsay threw up shortly after we got home. She ate again, and threw up. She ate again, threw up. I called Primary’s and they said to take her off milk, and go back to pedialite for the night, and if she got dehydrated to head back in to the ER. It was an incredibly long night, VERY emotional, no sleep, and lots and lots of crying for the whole family.
Lindsay threw up all through the morning and around 10:00 I switched back to breast feeding. After that she has kept down everything that she has eaten!!
Now, we are hoping that Lindsay keeps all of her food down, that her soft spots stay soft, and that when we go back next month for another MRI we’ll find that the passage has opened, that the surgery has worked, and that we won’t need a shunt.
Thanks again for all the prayers! Keep them coming! We love you all, and appreciate all that you do! A big thank you to all those who have helped with Matthew (mom and dad, Heather and Greg, and Kathy and Steve). You have made being at the hospital so much easier knowing that he was happy with you! Thanks for the visits, meals, gifts, balloons, etc. You are all so kind and we love you!!