Love!

120 Days

This little man is 120 days old. 82 of those days have been spent in the hospital. 38 at home, but it doesn't feel like it. His neck strength is getting stronger. He is starting to reach for and grab onto toys. Barely starting to take them to his mouth here and there. He loves to sit up. He talks and smiles all the time. The nurses say he is their favorite because he is such a happy, cute baby. I guess a lot of babies aren't this happy!!! Love him to pieces!

Sick, but Happy

Has a cold and is still smiling! We could all learn a thing or two from this little guy. He tested positive for the rhinovirus a couple of days ago. He is doing surprisingly well doctors say.

Silly Cooper

I have been home sick the past few days and have greatly enjoyed my time with Cooper. I just let the house go and enjoyed every little minute. We played with playboy, tickled each other with puppets on the floor, played a matching game, made cupcakes, built a fort made of chairs and a sheet and read books under it. I was able to read books to him and sing a few songs and tuck him in at night. I loved it. He is the sweetest, most hilarious kid! His little personality, or should I say big personality, shines more and more. Some of our moments from our days together:

• He put a towel on my head and told me I looked like Jesus.
• I put a mask on and he told me it was beautiful.
• I tried a sweater on and he told that that's cute.
• I told him I was wearing a mask because I was sick so he ran umps tails saying your heart your heart and got Easton's stethoscope and came to little to my heart. Moved my shirt in the back to listen to my back just like the doctors do. He understands a lot more than we realize.
• Tried jump roping with my bra! Who taught him to jump rope?
• And... The cucumber story! He loves cucumbers so we picked him one out and went to check out. Put our groceries on the belt. The guy in front of us was getting something green in the same produce bags, Cooper starts freaking out telling me, "He's taking my cucumber! He is taking my cucumber!" Took me a sec to catch on. I laughed so hard! I had to show him his cucumber was fine, but you should have seen his face!

Been teaching him that I am reading him words when I read a story. Today he pointed while I was reading and said "those are words."

Two of My Handsome Boys

Heart Cath & Echo

Easton's heart cath and echo went pretty well. It was a reminder to us that we will never be "out of the woods" with his heart. Here I was so happy he didn't have to have stents, balloons, or coils put in, thinking those were the big things. I felt punched in the stomach when the first thing they told us started with, "the only thing we didn't know about his heart is..." They discovered he has a narrowed pulmonary artery. Thanks fully this can be fixed during the Glenn. His right ventricle is showing left function, which is scary. At some point it will cause him to be in heart failure, but we aren't at the point yet. Function basically means the squeeze. It isn't squeezing as efficiently as one would like, but it is common with HLHS. Sadly this is not something that can be fixed. He has a collateral vein trying to form to "fix" his heart, something it tries to do cause it knows something isn't right. They will watch it and if it forms it will have to be coiled off. Also, his left lung has too much blood, which means it isn't pumping as much to the gut probably. They don't know if this will be fixed or not with the Glenn, though he will get more blood flow with the procedure. The echo went well, but one of his numbers was high and with that number and the decreased function, they decided to put him on blood pressure medicine. So, not horrible news, but more disappointing than we expected it to be, or at least hoped it would be. He wasn't happy when he woke up, but settled down fairly well. He had a quiet cry due to being incubated. He had to lay flat for 6 hours and they took his bandages off 24 hours later.

More Visitors

Easton had some visitors today, the day before his heart cath. Grandma, Nana, Uncle Brandon, Aunt Katie, and Uncle Scott all came to visit throughout the day.

Melts My Heart

Last night I went in to open Cooper's door and check on him before going to bed and found this...

He fell asleep with the picture of him holding Easton on his chest. Melted my heart. He loves his little brother and misses him.

Nana Reading to Easton

This is one of those photos that you will cherish forever. Nana reading stories to Easton. He loved looking at the pictures.

Mr. Independent

Cooper came to me Sunday morning with this read shirt in hand. He had this red shirt and I didn't feel it was appropriate for church so I kept trying to convince him to wear something else, even his favorite train sweater. He kept saying, "no, this shirt." He wouldn't let me do his hair either. Thankfully he at least matched. He was so happy to wear this outfit. He had his mind made up.

Discovery Gateway

I think with all the updates on Easton I have failed to update on our sweet Cooper. He is handling this all pretty well. He misses us being home. He is so lovey on me. He tells me he loves me and misses me and is full of snuggles. I feel like we rarely see Cooper, but we enjoy our time when we are together. We made cupcakes the other night. I love it because he loves to help me cook and he is full of giggles when we do it. We have enjoyed outings to "golf in the dark" as Cooper calls it and lunches together. We do a lot of puzzles when home. He loves puzzles! I sure miss seeing him every day. We took the time a few weeks ago to go to a local children's museum, The Discovery Gateway. We had a wonderful time, the three of us. Cooper loved the ball area, the magnets, and the water area. Here is a picture of him and Chris:

Visitors

Physical Therapy

When I started to realize we were going to be here a while, I requested physical therapy because I noticed Easton was starting to lose his neck strength from being held all the time or laying in his bed. He has shown great improvement and is doing really well developementally. We're working on rolling, tummy time, weight on his legs, and more.

 

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 Aunt Johnnie and Grandma Frederiksen came to visit.

Possibly Some Progress

Well, the new formula didn't work, BUT it did tell the GI doctors that's they are pretty sure he has an allergy to something in pediatric formula. They are going to try him on a formula typically used for 3+ year olds because something about not having some elements/fats in it that pediatric formulas do. There are a few reasons they think he has an allergy 1) he doesn't bleed when not on formula and any time he has bled it hasn't been NEC, 2) his discomfort stops as soon as they turn off the formula, 3) he tolerates pedialyte just fine. So, surgery for a g tube or some other surgeries are off the list because that won't fix an allergy!

Other news, Eileen stayed with Easton last night so I could go home. I sure miss being with Cooper and loving on him and sleeping by my husband. Cooper was all snuggles telling me how he loved me and that he missed me and brother. He is such a sweet kid!

Cross everything, your fingers, toes, nose hairs, etc. that this works!

Turning a Corner... Maybe?!

Since our second visit to the hospital for feeding issues, I've been concerned that it was the formula he was having an issue with. I have asked the nurse practitioners many times about changing. Specifically changing to something called Vivonex. Some heart moms (even a nurse) recommended it after their little one didn't do well on Elecare. They tried the Vivonex and issues solved. It seems Elecare is usually the go to when a heart baby has a bloody stool. He did well on the Elecare for a few days and then horrible since. Mind you we have to be incredibly careful making any changes because he is in critical condition until after his next heart surgery. Any feeding changes we make can cause him to get NEC, which could kill him. So I can understand them being a bit hesitant.

The last time we were here they once again told me no on changing the formula. The NP left and I just got this feeling I needed to insist on changing the formula. When she came back in I was in tears and told her I had this strong feeling we needed to change formulas so she said ok. Looking back I feel like they set me up for failure. Reason being, they knew we already had a bloody stool once and that is why we went straight to Elecare. It often means a milk protein allergy. Well, they changed his formula, but to a milk-based formula and that's when we really started getting bloody stools--- milk protein allergy. He kept coming back negative for NEC so they sent us home and then we came back the next day because continued, increased bloody stools and weight gain (Dec. 21) and been here ever since. I have felt awful feeling like all the bloody stool issues were caused by me, especially after I felt so strongly about changing the formula. I struggle to recognize when I feel the Spirit and I could have sworn I felt it on this.

So, to today. They have had him on Pedialyte to see if he could tolerate anything and he has done so well! Pedialyte doesn't have calories though so he can't live off of it. A GI doctor finally came in today to speak with us (not a fellow or word of mouth from the NP, but an actual doctor). He said he thinks Easton is allergic to the Elecare. He did well a few days and developed an allergy to it. He said breastmilk and formulas are similar and so he wanted to try this other formula, Vivonex. It is predigested so he doesn't think he will have a problem digesting it and it is different than breastmilk/most formulas. He said everything I have been thinking since our second hospital stay!

Now granted, this may not fix the problem. He is already gagging a bit and spit up once. However, to hear someone say what I as a mom have been feeling for weeks, months, was huge! I am grateful he is wanting to try this and boy am I praying that it works!

Another Day in the Hospital

Still Here

Well, it is January 10th and still in the hospital with no signs of going home any time soon. Easton was almost up to his full feed and started throwing up blood multiple times throughout the night. They think it was due to him retching. They just aren't sure what to do for him.

• They don't want him to stay on TPN (nutrition through an IV) because it isn't good for his liver and due to his heart issues he will already have issues with his liver.
• The hospital won't let me try a friends dairy free breastmilk due to liability issues. It is frustrating when it could solve the problem. He did great when I was pumping. I might talk to the lactation consultant about relactation tomorrow.
• GI doctors don't think g-tube will solve the issue. 
• They don't think g-tube with a Nissen will work. They think he will continue to wretch and break the Nissen.
• One GI doctor says he needs to be 10 kilos for a gj tube, but another says that isn't true.
• There is some invasive surgery that could be done but it is a big surgery and when he no longer needed it he would have to have the invasive surgery again to fix that. The heart surgeon doesn't want to do it and to be honest I don't either, doesn't seem right.
• Thought about taking feeding tube out while he is on TPN and work him up on bottle feeds since he was so close before, but cardiologist said if he wretched and aspirated he likely wouldn't make it so he highly recommended us not do that.

They don't think this is due to poor blood flow because he is getting good circulation in his toes. They have him on pedialyte at the moment and are trying to increase it to see if he can tolerate anything to the gut. He still wretches here and there. They wonder if taking his feeding tube out would help at all. Maybe he has a sensitive gag reflex. Cooper did so it wouldn't surprise me. I have requested a care conference where all doctors will sit down and meet to discuss his past and where we want to go. We need a plan because since Nov. 15, we have gotten no where.

A side note: Dr. Mart, the cardiologist on this week, is incredible. When I first met him I text Chris to tell him how awesome he seemed. Later in the week I read an awesome article on he and his wife, ,wow! Talk about incredible people! They have adopted 17 children, buried two of them. Most all of them with special needs. His wife now has breast cancer. He served his mission in SD like Chris. I spoke with him about the gospel tonight and WOW he has some incredible insight. I learned quite a few things about the atonement and Christ and things in the temple and their relation to the atonement tonight. He told me I should talk to his wife sometime and how she is at peace with her diagnosis. It amazes me. I feel peace on occasion, but it is rare. I would love to know how she came to the peace, but I know it is through the atonement. Ahhh! Love it!

Click HERE to read article.

Another Set of Tubes

We took Cooper to his annual NICU follow up appointment and as last year, he didn't pass his hearing test in his left ear. We took him to ENT and same thing as last year, left ear tube fell out and was stuck in the ear. Doctor said they should be lasting a year and a half and his never last a full year. We tried medicine and putting off the surgery to see if it would drain, but not luck. Cooper got another new set of ear tubes today. He did super well and was so happy for me to hold him after surgery and that he got to eat Popsicles. He is such a sweet boy, he tried sharing his Popsicle with me telling me "it's yours."

Dr. Kermit

This little man is still in the hospital. We are hoping to go home in a few days. He is up to 21 mls on his feeds (goal of 28). They will begin increasing the calorie count tomorrow (currently at 20kcal, goal 24kcal). He seems to have responded well to the week long treatment and is doing well on increasing feeds. No bloody stools. He has had a high heart rate, but he doesn't have a fever, it isn't abnormal, and doesn't appear to be because of pain so they aren't worried about it. They tried and ng and he started to get a bit retchy as feeds increased so they decided to go back to nj. They thought maybe he had a high heart rate because the feeds were irritating his tummy since we didn't have the heart rate issue when off feeds. It doesn't appear to have brought the heart rate down, but we will see. We will all be glad to be home together again soon. I sure miss seeing my Cooper everyday!

My Happy Boy

Hello, 2015!

I was taken back a bit when I realized New Year's Eve was going to be a harder holiday for me than Easton spending Christmas in the hospital. Usually you look at a new year as a chance to have an even better year than the last. A chance to look forward to the awesomeness that it can be. I shed many tears last night realizing I have a lot of fear for the new year. I see a year of worry, of sacrifice, of scary possibilities. I see a really hard year ahead. It truly could be one of the worst years of our life or possibly one of the best. I was a bit of an emotional Debbie Downer last night, but woke up this morning feeling renewed. All we can do is what we can do. So much of life, including life itself, is out of our hands. Though the fear will never go away, it doesn't have to rule our life. I have decided that this year my one word goal is "BE." In moments throughout the year I want to "BE." Whether it BE happy, present, joyful, optimistic, full, faithful, loving, patient. I also want to read the Book of Mormon. It has been a long time since I have read it front to back. I would like to serve more. I am thinking a small act of service once a month. I have some pretty fun ideas. I also want to limit my use on my phone. I have to keep it with me constantly because I don't want to miss an important call for Easton, but it also causes me to check my Facebook CONSTANTLY. I hate it. Horrible, very bad habit. I get bored so easily and so I check it. Enough excuses though, I am hoping to find a way to limit it. And back to my BE, I want to be more present. Life is so precious and my boys are growing up too fast. I am getting older, we all are. I just want to be present and enjoy the moments. So, here is to a new year. One full of ups and downs, but one with the chance to grow like we have never grown before, to love like we have never loved, and to be happier than we have ever been. Hello, 2015!

Happy 3 Months

This little man is three months old! He is 9 lbs 13 oz. He is a smiley, wiggly boy! He loves to have his forehead rubbed, watching football (or the movement of the tv), being held, and all the attention from the hospital staff. The first thing people comment on are his big eyes and how cute he is. Love this little addition! Happy birthday, Little Man!