Saturday, February 26, 2011

The Latest on Lindsay

We just heard back from the doctor. We’re headed back to Primary’s for another surgery. Her surgery is scheduled for 10:00am tomorrow (Sunday) morning. They are going to go in with a scope to see if they can puncture the ventricle to let it drain. However, there is an artery near the ventricle that if he hits it will cause Lindsay to have a stroke. If he doesn’t have a straight shot he will put the shunt in during that same surgery. So, she is going in and we’re not sure what she’ll come out with! She'll need to start her fast around 2:00am this morning (8 hours)!! It is going to be a long night! Wish us luck! And keep those prayers coming!!

Friday, February 25, 2011

Lindsay’s Update

Wednesday February 23rd

Our pediatrician suggested we apply for Early Interventions, so on Wednesday we had a nurse come out to look at Lindsay. There are not a whole lot of tests they can do at this point because Lindsay is so small, so she didn’t qualify, but they are going to keep tabs on her and she may qualify later because she is at risk. We found out that she is developmentally delayed already just because her head is so big she can’t lift it up on her own at all or support it herself. The nurse also felt her head and said her soft spots felt full, and when we measured her head we found that it had grown 4 cm, and the nurse was also concerned about her “sun setting eyes” and suggested that we go back into Primary Children’s. I called the neurosurgery and they said to take her into the ER.

We got into the ER just before 4:00 and waited and waited. We talked to so many people, but no one was really sure what to do with us. We finally got in for a CT and then we waited and waited. Over 5 hours later they finally admitted us into the hospital and decided they wanted to keep us overnight and do an MRI in the morning. This time we got our own private room (which was HEAVEN) but unfortunately even with just Lindsay it is REALLY hard to get a good night’s rest between that awesome cot and people coming in and out to check on our little Lindsay.

Thursday February 24th

Lindsay had to start fasting at 5:00 am and then we went in for the MRI around 9:00. I asked the nurse if we were going to have to wait the 12 hours for her recovery, but they said that since she was over a month we could go home as soon as she was ready. When Lindsay got out of the MRI they said that her cyst had gotten smaller but that her ventricles were growing and that we would probably be staying the night and going into surgery.

Dr. Kestle looked over the MRI and said that he thought that passage was open and that the cyst was draining, but the spinal fluid wasn’t draining fast enough from the ventricles. So, he said that we could either try doing a shunt or we could try poking holes in the ventricles and hope that the spinal fluid would drain up around the brain, but that surgery only has a 30% success rate at her age. The success rate goes up to 70% if we wait until she is 6 months old. So, now the problem is just weighing the pros and cons. It would be better for her not to have to have a shunt because her ventricles will shrink a lot and the shunt will need to be replaced (possibly several times). Then, if they wait until 6 months to try the other surgery her head will have that much time to be growing and swelling, which will not only cause brain damage but put her developmentally behind. Darin also thought there was a possibility that she wouldn’t need either, but I didn’t remember him saying that (but I hope he did).

(Our private room)

(Waiting for Lindsay to come out of sedation)

So, after our talk with the doctor he said that he wanted to talk with some other doctors about it and get some other opinions then let us know. He also said that Lindsay could go home as soon as she was out of sedation, could breathe on her own, and keep a feeding down.

Lindsay woke up, but every time they took her off of oxygen she wouldn’t do great. I fed her and she kept her food down, but she just couldn’t keep her food down. We were hoping to go home around 3:00pm, but since she still wasn’t breathing they moved us over to the NICU about 8:00pm.

I think I was really tired and really emotional at this point because I had a breakdown over something not even a big deal. As we were moving from the IU to the NICU someone (I think trying to comfort me seeing my watery bloodshot eyes) said, “Oh, what a cute little boy!” (That is right she said BOY). As soon as we were in the NICU I started to bawl and said, “She’s a girl, and a really cute girl!! She just needs some pink or a bow.” Two of my darling nurses left the room, and came back shortly after and said, “We went shopping!!” And they put Lindsay in a darling little pink outfit and put a cute little bow in her hair. Again, their kindness made me lose it again. Those sweet girls!!

(Lindsay in her new outfit and bow. You can also see a mild version of her "sun setting" eyes)

The NICU is a lot different than the IU in that there are no cots or even comfy chairs. My chair was wood and hard (obviously), and the space is so tiny (since there are 5 other babies in the room with you) that every time the nurse needs to check stats, the computer, monitor, etc. you have to get up. I asked the nurses what the policy was on spending the night with the babies and they all said I needed to go home. Not necessarily because of the policy but because I was so sleep deprived that I wasn’t any good for Lindsay anyway. I started bawling again because I didn’t want to leave my little baby, but I knew they were right. I gave them the breast milk I had pumped and sadly went home.

Friday, February 25th

I woke up, pumped, got ready, got Matthew ready and took him up to my mom’s, and then into the hospital after 8:00am. They said that Lindsay had done really well during the night, and that she ate all of my milk, and then also had some formula, but they didn’t take her off oxygen until 7:30 am. I thought they were going to let us go home around 10:00am, but every time Neurology came in to see if she was ready for discharge her oxygen levels would drop and they’d want to monitor her longer. We finally made it home around 6:00pm.

(Hanging out in the NICU)

So, now it is WONDERFUL to be home (I am not a big NICU fan—hoping we don’t have to do that one again). Now we just need to wait until Monday to see what the doctors think the next move should be.

Thank you so much for all the prayers, service, help, babysitting, meals, fasting, notes, etc. from everyone! We can’t believe all of the people who have reached out to us during this time. Even little things like leaving comments on our blog and facebook have meant so much! Even from people we don’t know so well, or that we haven’t talked to in years—it means the world to us!

As hard as this challenge has been we have really felt the prayers of others. We feel so blessed to have such wonderful friends and family. I knew we had great friends and family before, but I didn’t realize that everyone was THIS good!! We count our blessing everyday—they are endless!! This experience is making me want to be a better person! I can’t believe how selfless people are! It really makes me want to be a better person and be like the good people around me! Thanks again especially to our family (mom and dad and Heather and Greg) for taking care of Matthew for hours and hours on end!!! We love you sooo stinking much!!

Wednesday, February 23, 2011

Pray for Little Baby Lindsay

We had Lindsay checked today and her head has grown 4 cm in 2 weeks, her eyes are "sunsetting" again, and her fontanelles are really swollen. Back to Primary's we go.

Friday, February 18, 2011

Lindsay's 1 Month Update

Lindsay is one month old today. Part of me can’t believe a whole month has gone by, but most of me can’t believe it has ONLY been a month. We love this little girl so much and we are so glad that she is in our family.

As for the update, Lindsay is still throwing up every day which makes us nervous because that means she still has pressure in her brain, leading us to believe that the surgery didn’t work. Her head is growing too, also not a good sign. Darin and I are having a hard time deciding if her soft spots are full or not, but every time that I have called Primary’s they just want us to wait it out until our appointment in March. On the plus side her stiches are healing and the two holes in the back of her head are nearly gone.

Thanks again for all the prayers. We really do appreciate them! Now we’ll just keep playing the waiting game until March 7th.

I love this owl, but I am staring to think that Lindsay really is afraid of it…ha ha!!

1 month

5 days

Sunday, February 13, 2011

Happy Valentine's Day

This is my 4th year with Darin as my Valentine, and I couldn't chose a better Valentine!

We had a nice, quiet V-day this year. It all started with my sister and brother in law bringing us this awesome gift basket filled with bread, crackers, cheese, meat, grapes, stawberries, chocolate covered strawberries, dove chocolates, mints (that spark in the dark), molten lava cake, a Glee love CD, sparkling grape juice, and a box of chocolates. Thanks Greg and Heather!!

We enjoyed our "french dessert" and a movie on Saturday night.

Matthew got two valentines from girls, so he had a GREAT Valentines Day

Lindsay didn't have a Valentine this year, so she wasn't so happy.

This year Darin ran out of my favorite cologne, so I got him another one--not that exciting but he humors me!

We also got this cute (and delicious) Valentine of chocolate strawberries from our family friend Cindy! Thanks cute Cindy!!

Darin gave me two AWESOME V-day presents this year! 1st he texted me while he was at work to let me know that he rented a jet that had a sign flying behind it that says "Darin loves Haylee" that was going to fly around the whole world. He texted me again later in the day to tell me to go drive up Snowbird and go to the top of the mountain, look down, and the light from the stars and moon would show a message "I love you" written with rosebuds in the snow! How romantic is that!!? Unfortunately, since I was home with the kids I didn't get to see either of them, but the thought alone melted my heart! (I also did get some awesome chocolates and bubble bath!)

Matt keeps us busy

I was feeding Lindsay yesterday and Matthew kept asking me to "c'mon." I told him I would as soon as I was done feeding Lindsay. When I finished feeding Lindsay I found Matthew covered in Lindsay's baby lotion. I guess I need to give him a little more attention.

Lindsay at 3 weeks

It will all work out

"It isn’t as bad as you sometimes think it is. It all works out. Don’t worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us. … If we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers."

-President Gordon B. Hinckley

Wednesday, February 9, 2011

Lindsay’s Arachnoid Cyst and Hydrocephalus

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).

Wednesday (2/2)
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.

Thursday (2/3)
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.

Friday (2/4)
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).

Saturday 2/5
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!

Sunday 2/6
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.

Monday 2/7
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.

Tuesday 2/8
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!!