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!!


Rosalee said...

I'm happy to hear that you are home! I will continue to keep your sweet Lindsay in my prayers.

KYoho said...

Oh hunny, I'm so sorry this is happening. Stay strong and let your testimony carry you. If Lindsay is falling behind developmentally, know that babies are incredibly resilient and I have no doubt she will catch up. I'm glad you're doing Early Intervention, it is a great program! You are in my prayers (and Alayna's too!)

Rick Shurtliff said...

Hang in there you guys. I can't imagine how hard this must be to live through. Reading about it is hard as it is. I hope everything turns out well and this challenge only makes the great times ahead even better. I add my thoughts and hopes to those of countless others that are pulling for you and your sweet family.

heather said...

She is a beautiful girl. Those nurses are so sweet to bring you a little outfit.
You guys are in our prayers and I hope that a solution is found soon for Lindsay.

Savannah said...

We're praying for you all Haylee! Thanks for the update. You are such a great mom and such a great person, it's hard to imagine you being any "better" of a person! The Lord is with you!

Adam and Cami said...

I can't even begin to imagine the hardship you are going through! But I see your strength through it all! Keep it up! You are in our thoughts & prayers daily! I wish little Lindsay the best! She is so sweet! I love you guys, and please let me know if I can take Matthew for ya! I'm home all the time, and am MORE THAN HAPPY to have him over to play for as long as needed!

McKenna said...

Haylee, I continue to pray for your family and your sweet little Lindsay. You are all loved by so many it seems! I pray you can find some peace and comfort right now. Love you!

Natasha said...

We're glad you're home. As always, little Lindsey and your family will be in our prayers. As I was considering the difficult trials that a number of my friends have experienced lately particularly regarding their babies, I realized that the trials have come to those who are the most stalwart, amazing people that I know. That includes you! You are amazing! Little Lindsey is so blessed to have you as a mother!

Courtney N said...

Poor thing! I am glad to see you are home and things are going well : )

Mike and Lauren said...

Haylee, I know it's been years since we've even talked, but I've been following little Lindsay's story and you are all in my prayers. She is such a beautiful little girl, and you guys are amazing parents. I loved your quote from President Hinckley you put up here. We will continue praying for all of you to be strengthened and for Lindsay's health. Sending lots of love your way!

Banana Rama said...

Haylee- You are such an amazing person and I appreciate that you share this difficult experience with us. I think of you and Lindsay and your family everyday and want so badly to just come give you a big hug!!!! I have a small taste of the NICU and breakdown thing but nothing compared to what you are experiencing and I pray for your burden to be light! And about them thinking she's a boy? No a VERY cute little girl with love and strength and beauty. (my baby has her ears pierced and a lady asked 2 times if she was a boy, and shes in a girl carseat!!) Hang in there friend, you are amazing and the Lord is aware of you and your family!

Dave and Mandi said...

Haylee your faith and positive attitude is inspiring and a huge blessing for your baby. I know you are in the best of hands at Primary's. I have had the opportunity to care for many children with hydrocephalus just like Lindsay and I truly believe that having positive and involved parents like you make all the difference in the world!!! We will keep praying hard for your sweet little Lindsay and your beautiful family.

M+H said...

Wow Haylee, I had no idea all this was going on. Your little GIRL looks like an ANGEL and she is a BEAUTIFUL GIRL. One time Melia WAS wearing pink and had a bow in her hair and someone asked me if she was a boy. People are CRAZY! Anyway, now that I know this is going on I will definitely keep you and Lindsay in my prayers. Our hearts go out to you.

Shauna said...

Oh man every time I read your blog I start crying. I'm so sorry you have to go through this with your little one. I remember being in the NICU with Tate and yes not liking it much either. Sometimes you feel so helpless and they are so tiny. We will keep praying for you and Lindsay. She is a beautiful girl with an amazing mom! I love you! Let me know if I can do anything to help out too. I can always come watch Matthew at your house if your fam isn't around. My kids would love playing with him.

Ioana said...

I am so glad you're all home! I'm sorry you have to go through this. Stay strong and know that we pray for you. My kids always mention sweet little Linsday in their prayers. Please let me know if I can help anyhow: have Matthew over, bring you dinner, anything!

DeVries Fam said...

I started following Lindsay's story on on your blog and I am praying for your family! You were always such a good example of faith and strength.

Mandee Monson said...

You are such an inspiration. I got on your blog and read your updates and my heart just aches for you guys. I can't imagine going through all this. We love you so much and are keeping you in our prayers. Be strong and courageous! It will all work out.
Love you,