Sunday, November 13, 2011

4 months old!

Rocky wanted Lilly to be in her Johnny Jumper. He said it is good therapy for her. So Lilly slept instead.
Logan LOVES his toys and bottle! Toys always end up around his arm!

Tomorrow Lilly and Logan will be 4 months old! They are getting so big! They both have big personalities.

Logan loves to smile and laugh. He is such a fun loving little guy. He is such a big flirt. He loves people. He just started to roll. He hated him tummy at first, but is starting to like it. He loves playing with his toys. His cousin, Lexi, in KY, gave him a Mickey Mouse. Logan LOVES his Mickey Mouse. He eats it all the time. Lilly does not like to suck on her hands, and Logan must know sucking on hands is an important developmental thing, so Logan takes the pleasure of sucking on her hands for her. Such a great twin brother!

So far, Lilly has been diagnosed with Moderate HIE (hypoxic-ischemic encephalopathy- which means lack of oxygen during birth), Mild Cerebral Palsy (CP), and she may have CVI which is Cortical visual impairment. The good thing about CVI, is with therapy is can get better! So she has just started vision therapy. CVI is when your brain has a hard time understanding and processing what you are seeing. But Lilly can see. Her favorite color is yellow. They think that is the best color she can see so far.

Lilly is still on her feeding pump with her g-tube. She will eat small amounts of rice cereal on a spoon. Which is amazing cause she HATES anything in her mouth. She HATES pacifiers and bottles.

Lilly will also start rehab soon up at Primary Children's Hospital. She will go there for her CP, but also for her neck. She only likes to look to the right, which is causing a flat spot on the back of her head and making one of her ears go forward. We might have to end up doing helmet therapy later, but hopefully we can resolve the issue now.

Lilly started on a new medicine to help with her tone, and tight muscles. CP can be uncomfortable so it makes her cry ALL THE TIME! We just started in yesterday, and I really hope it helps. Cause I am going insane with all the crying. If it will help, I will be so relieved and so will Lilly. The only problem so far with the new medicine is that it makes people constipated. So Dr. Knochel also prescribed her something to help her go poop. She is supposed to have 2 poopy diapers a day with it. It is still morning, and she is on her 3rd poopy diaper. She is so funny when she has a poopy diaper. She HATES her poopy diapers and will try to lift her butt up and cry until I change it. Two of her diapers were in the middle of the night, and so she woke up twice to get help for it.

Something else we noticed with Lilly now, is her neck is weak. She will lift it up for short period of time, and then it falls. But at the same time, she is VERY strong. It is weird to explain, but she is weak and strong at the same time. Lilly arches her back when she is really mad. She starts kicking her legs, and then arches her back and straightens her legs. There is NO BENDING the legs when she is mad! Or putting her in her car seat when she is mad it is impossible with her arching of her back. The other day, I put her in her swing and buckled her up so I could go pump. She started crying, and I told my husband to go see if she needed a diaper change. She was eating from her g-tube at the same time. Lilly arched her back so much and she somehow got out of her buckle and fell on the floor! The g-tube was making her stay on her side. My husband yelled for me, and I came running in. I was on the edge of tears when I saw that! She sleeps in her swing so I can feed her in the middle of the night. She has to be upright when she eats from a g-tube. I felt like an awful mother! So we put the buckle on a lot tighter now!

We also found some of the reason for her awful reflux. I told the doctor that I think she was allergic to cows milk. So I stopped drinking milk myself, cause she was drinking my milk. I also stopped eating cheese. It was hard, but I want the best for her! Well, we went to a GI doctor. He did a stool sample for Lilly, and we realized she is a lot more allergic to milk than we thought. Milk is hidden EVERYWHERE! It was still showing up as an allergic reaction in her system. Which I found out that a lot of kids with brain injuries are allergic to milk and have awful reflux. So, I gave up, and am giving Lilly a formula with no cows milk or soy in it. It is expensive stuff, but luckily my insurance will pay for it! Which is a huge help for us! I am still giving Logan my milk though. The GI doctor also put Lilly on some medicine to help the pain of acid reflux. It is so sad seeing her in so much pain, and seeing vomit all over coming out of her nose and mouth in large amounts. It looks painful and sounds painful as she is gaging on it, and trying to control it. You can hear it coming up and down. Poor baby!

I joined two facebook pages called "Hope for HIE Forum" and "The Beautiful Faces of HIE." These two groups have taught me so much! A lot of these kids also have CP from HIE brain injury too. I feel like I am finally not alone in all of this. I can't call my normal friends and ask them a question about a medicine they tried for their baby or a g-tube question, etc. But I finally have this group, where I can do that. Some people have even called me and we have talked. Great support groups! I am so thankful for them! I learn little things, that we just thought were weird, is actually common among HIE kids. For example, Lilly breathes loud. People think she is sick, but I also tell people it is just her normal breathing. We found out that is normal thing for HIE kids. Interesting!

Early Intervention- Kids Who Count, is also a great blessing in our lives. Our therapist, Mary, is so good, and teaching us so much on how to help Lilly Bean. I also love their toy program. The "toy lady," Holly, comes and lets us borrow toys for Lilly and Logan that are age appropriated and help them with developmental needs. It is so parents do not have to spend a lot of money on different things. It is only supposed to be for Lilly. But Holly hooks Logan up too. Well, they just let us borrow "Signing Time Videos." Those videos are expensive! And Logan and Lilly will both watch them happily! I am wondering if Lilly will be speech delayed. Because Logan talks up a storm (for being 4 months old and all). But the only time you hear Lilly use her voice is when she is crying. So I am signing with both of them, cause it is good to do that anyways. But it is nice to have those videos too!

I am trying to have the best attitude that I can with all of this. However, it is very stressful. Having twins is stressful. Having a child with Special Needs is stressful. I have BOTH! I am struggling here! If I had the money, I would so hire a nanny to help me! I am trying to go through my insurance, cause I hear that sometimes insurances will pay a nurse to come everyday or a few times a week to help out with their special needs babies. I doubt that will happen, but I am trying. I feel like I can not give Lilly all the attention and therapy that she needs. And I have no time to clean my house or anything! Some women from my church came to my house on Thursday and helped me clean. It was SOOOO nice and helpful of them. I am so thankful. People have asked what they can do to help. So this is now my answer: I would LOVE people to come to my house and hold a baby, so I can work with Lilly or clean, or nap. LOL. So if that is something you are willing to do once a week, let me know. I need help!

Anyways, I have been just blabbering. So I will go now. :-)


  1. Hi, we don't know each other personally, but I am on the UVMOM FB group and saw that you posted. You seem to have such strength and a great positive attitude through this all. We pray that Lilly will continue to get better each day. Yellow is a great color to love!! I think it's one of the happiest colors!! :)

  2. I wish that I was closer. I would come over as often as I could to help :( I wonder if you might be able to hook up with a local community college to see if there are any students in early childhood education programs that need practicum hours working with young children. You might be able to get some free help that way. I can easily make phone calls, if that is something you think might help, or its something that your comfortable with?

  3. Ala-Bama-Lama: Actually that would be something I would be interested in. Email me at And I will give you my phone number. Thanks!

  4. Emily,

    I wish we lived closer. I would love nothing more than to come hold babies for you. If you ever have drugs questions, though, you can certainly ask Mark, since that is his specialty.

    We have been told that Costco is opening a store in Spanish Fork, and Mark is applying, so then we would be closer!

  5. Emily you are my hero. Here I am having a pitty party about having Irish Twins and you are dealing with so much more! Sorry to hear about the milk issue, I just started drinking milk again with Zane. I'm glad you got formula through your insurance though.

    When your hubby has a night off let me know so we can go have a mommy day out with no babies. Remember how important it is take care of yourself so you can take care of your babies.

    Love ya,

  6. I would love to help you. If you dont mind connor and katelyn coming I would love to hold Logan. I will bring dinner over every monday and wednesday. If you want on monday and wed night i can pick up some laundry and return it to you the next day clean and folded