Dear Self in March 2014,

I know you are freaked out right now. They are talking g-tubes and G/J tubes and a Nissen proceedure and so many other things. There are so many questions about what is going on and NOBODY has answers and they want you to make a decision. Life is full of these moments but when someone is asking you to make a decision for your child without being able to tell you what the repercussions are, it is scary as hell. 

So you research and pray and talk about it with others and pray and you make a choice knowing that God knows what he is doing.

And here we are. The kids just turned three.

Self, she is fine. Not every day is a walk in the park. She throws some wicked tempertantrums but she also likes throwing the ball and giggling about the word underpants... and she eats... all. the. time. I wish I could tell you not to worry, but I know you will anyway.  

Today, her g-tube was taken out. We haven't used it in over a year and a half. It was time.

​We celebrated with cake and pancakes from McDonalds. 

She did it! I wish you could see her now!

Love Katie

The kids had an 18mo check up on Monday and I went into it with a bit of apprehension. The big question was "Is Lilah gaining weight?" 

It's been a month since we stopped using the food pump to feed Lilah and even though she out eats Alec at most meals, she needs to be getting enough calories and nutrition to continue to grow and gain. 

Developmentally both kids are doing amazing. They have caught up to the non-preemie milestones. Both kids are walking (mostly running). They can name lots of body parts, they follow multiple step directions and they can say a handful of words. The doctor was thrilled to see their progress. 

Alec is close to the 50th percentile for both height and weight and never stops moving.

Lilah is in the 6th percentile for height and the .13th percentile for weight... and she isn't gaining... but she isn't losing weight either. This was why I was nervous. She is doing so awesome with food, the thought of bringing the pump back into the picture is disappointing. The plan for now is to switch her back to all formula for liquids to see if that helps her gain a little. We will be back for a weigh-in in about four weeks. 

So with great excitement and nervousness I have decided to pitch the pump, at least for now. We will continue to use her feeding tube to get liquids into her until she is drinking on her own, but since that is only a few ounces at a time, we can use a syringe and a tube to bolus feed it to her. 


So good bye pump! You've served your purpose and now you can relax in a box hopefully never to be needed by us again. And when that tube finally comes out, we will ship you off to some other family that needs you. 

A few days ago I had sent a log of the amounts and types of foods and liquids Lilah was eating at each meal and snack time.  I just got an email back from the dietitian who is thrilled with the amount of calories that she is eating. 

Her goal is to reach roughly 1,000 calories daily for catch up growth.  She is averaging 1160 according to the food log I sent. This means we can stop the after hours night feed!!! 

Our only goal now is to increase the amount of liquid that she drinks by mouth. This could be water, milk or juice. I have a feeling that this process will be very similar to how it was with food. One day, when we are hardly paying attention, she will down a glass of juice and off she will go. 

My heart is filled with joy and my head is still trying to be convinced this is all real. What a journey. 

We had Speech this morning. Amy watched Lilah (and Alec) take down a whole piece of peanut butter toast, several bites of scrambled egg with cauliflower, blueberries and cereal. Not to mention several swigs of milk from her sippy cup.

Lilah has been out eating Alec for almost a week now! Even dinner has picked up.

The other new development is that Lilah has been drinking her milk (and formula) 2oz at a time. Last night she drank 4oz of her 6oz feed right before bed. I still give her a bolus feed after she goes to sleep depending on how much liquid she has had for the day. Last night it was only 4oz!

The BEST news is that we get to drop down to having speech only once a month! I love speech. I have learned so much, but this means that we are getting even closer to being finally done with that feeding tube!

We ended up getting the stomach flu horribly over spring break and Lilah stopped eating completely. It felt like we had gone back to the reflux days. There was a lot of puking, a lot of crying and a lot of laundry.

Alec, Dave and I got over the vomiting after 24 hrs but poor Lilah continued to have trouble keeping things down for over a week.

Two weeks after the flu she finally got back to the great eating she was doing. This weekend was by far and away the best yet. She has been eating full meals! Tonight for dinner she ate better then Alec. She even ate cauliflower and lots of it!

The next goal is to work on liquids. Up until this week we could get her to drink about 1/2 oz at a time. Last night she drank 2oz of formula before bed so she has already started to make progress.

She will continue to see a speech therapist every other week to work on it. We are happy with her progress as well as holding our breath hoping it continues.

She has really started to walk this weekend as well. It won't be long before she is keeping up with Alec.

I just recently had an annual meeting with the school district and they have graduated Alec from the early intervention program. They normally recommend preemies stay until two but they think he is doing so well that they were very confident taking him off the program. He continues to do well. He is running and babbling and laughing all the time. Occasionally teething makes him grumpy, but even then it's pretty easy to get a smile out of him.

About a month ago we met with the speech therapist at the hospital and the dietitian to talk about switching Lilah over to pediatric formula because of her age. Pediatric formula contains different nutrients than baby formula that is more age-appropriate as they get older. However it is also more expensive.

Fortunately for us because it's medically necessary insurance is able to cover part of the cost. But the most amazing thing is that pediatric formula has more calories which means we can feed her less food and still make sure she's getting enough to gain weight. With the baby formula we were feeding her five times a day: four while she was awake and one after she fell asleep at night. I was waking up at 4:30 every morning for the first feed in order to make sure we had enough time in between feeds that she could get hungry at least a little bit.

With this new formula now we can feed her four times a day: breakfast, lunch and dinner and I feed her one time after she's gone to sleep at night.

Since switching to the formula a fews weeks ago her appetite has increased and eating solids has increased significantly! We have been careful to make sure that were taking her favorite foods and mixing it up a little bit so she doesn't get burned out on them. However every day she surprises me by being willing to except something new.

Just last night for the first time she took her reflux medications by mouth right before bedtime. I have been trying to get this to happen for months. It seems fitting that yesterday was also a year from the day that we brought her home from the hospital. It was a great day!

Recently I was showing the doctor who delivered the children pictures of them and how they've grown. That's when I realize that almost every single picture I have of Lilah is when she is eating. I guess if you didn't know the situation it would probably seem pretty strange.

I can't thank you all enough for the prayers and support that you have given us over last year and a half. She still have some work to do with accepting liquids but she's making progress with food in leaps and bounds.

Now the challenge is going to be making sure that she's getting enough nutrition and gaining weight without needing the tube. We still use the tube for every feed just to make sure she's getting enough nutrients and hydration.

I have started this blog post many times since October, but something always interrupts me… hmmmm….

Just now as I was typing the above sentence I had to stop and go deal with a very unhappy sleeping Lilah. :)

So where have we been? Let's take things month by month:

We started off November with the Family's first donut crawl. We visited three different donut establishments in the twin cities with Auntie Alicia. Even though it was cold, we had a blast. We even got to hang out with the bakers in the back of Mel-O-Glaze! One of the bakers has two year old twins. 

Alec and Lilah both started crawling. Alec picked up his knees and away went the guppy crawl. Days later Lilah figured out what to do and it was off to the races. I spent a few hours with her practicing how to get from her back, roll over and get from her tummy to sitting up and that was all it took… she was rolling over like a pro! I guess all she needed was a little motivation to get the skill down.

We celebrated their first birthday by driving around town to our various Thanksgiving day destinations and eating cupcakes and cake. I was a little worried that Lilah would not want to eat the birthday treats and we would miss out on the classic birthday smash fun, but she surprised us all.

Lilah and Alec also learned they get both a new Uncle in 2016 and a new cousin in June of 2015!

Here are a few pics from November:

December flew by in a blur. Alec discovered his love of forbidden places (mostly the toilet and the dog's water bowl) and we have been doing our best to keep him out of those places ever since. 

We went to visit Santa at Ridgedale and had a great time! It only took about 20 seconds for Lilah to size up Santa, decide she wanted nothing to do with him. Alec followed suit. What a memory.

We had a one year follow up at the NICU clinic at the hospital. They gave Lilah an echo and her heart no longer has any sign of the murmur! The Cardio doctor officially banned her from the cardio department of the clinic! Yay! The kids were also given a cognitive test called the Bailey's test and scored pretty high. The NICU doctor said the next year would be a struggle because the kids will be thinking more advanced then their motor and communication skills. They strongly encouraged us to keep up with the sign language. 

The kids (and I) enjoyed our first Hanukkah party with Uncle Steven and Aunt Linda. They really got into all the music and enjoyed Sandpa's piano playing!

Christmas has been postponed due to an illness in the family so we hope to celebrate at the end of the month. Santa brought a music table which is daily entertainment. 

Lilah was introduced to hershey's kisses and ate two whole kisses in a matter of minutes. It was amazing to see and I wish she would eat all of her food with such control and excitement. More on her eating progress in a bit. 

Here are a few pictures from December:

We spent New Years Eve at home with our good friends who also have twins. It is so fun to see our kids growing up together. 

Alec has started to walk and each day he is getting more and more confident. The amount of time he spent taking steps today was amazing. It's only a matter of days before he is running all over the house. 

It's hard to explain Lilah's eating. I feel like we are spinning wheels but every time we get in front of a speech therapist, they are thrilled with her improvement. They clearly see something I don't. We see someone once a week now, rotating between the hospital and home visits. 

She isn't taking any measurable volume in solid food by mouth so she is not any closer to getting off the g-tube. However she has gotten better at trying foods on her tray and there have been some very great feeding days.

The amount of spit up has decreased significantly. She very rarely throws up during a feeding these days. The only time she struggles is when she is upset whether it be at taking a nap/bedtime or if she gets hurt (and you know how easy that can happen with all the activity of a one year old) and then we have to get her to a sink pronto. 

One of the therapists said that the main goal is forward progress no matter how small. She said many times these kids will all of the sudden take off with eating and I am holding on to that. As long as they are pleased with her progress (whatever that may be) then I can hope one day the light will go on and she will start eating.

For now we solider on, putting food in front of her at every meal and exclaiming how delicious it is! Now if we could just figure out a way to get everything to taste like a hershey's kiss...

It's hard to believe it's been a full year since I landed in the hospital. This time last year I was doped up on magnesium. I don't remember much except that I wasn't really sure what was going on. I could not feel any of the contractions they were telling me I was having. 

They had a horrible time monitoring the kids heartbeats. Any time one of the three of us moved, a nurse would walk in the door and have to adjust the sensors. Finally one of my nurses fought the doctors and got them to agree to stop the 24 hour monitoring and it allowed me to get some sleep.

They had to keep me in the maternity ward the first few nights because there were no beds available in the antepartum ward. At one point Dave told me he could hear a baby crying… I informed him that it was actually a woman in labor. It was good to finally get out of there. A few of the nurses told me the bed I had been living in for three days was only really meant to be used for a few hours of labor, not for days so the bed I was moving to would be more comfortable.  

I look back at those days in sort of a haze and yet there are bits and pieces that are as clear as day. I've spent a lot of time today thinking about that crazy beginning to being a mother. 

This morning we spent time doing something I have wanted to do since the kids were born. We had professional pictures taken!!! I cannot wait to see the photos.  

The kids and I played on the floor in the living room most of the day and just as a nod to the day the kids were blessed with an hour and a half long afternoon nap… Thank you Lord! 

It has been a wonderful day.

Tonight Lilah took five bites of squash and might have had more if I would have been able to get her to stop sucking on the spoons. She had a really fun time playing in it too which is good. The goal is for her to be comfortable and have fun with the eating experience and hopefully the volume will come.

Alec is on the move. He is army crawling but only when he sees something that he shouldn't get into (phones, iPads, computers, the vaccumm cord, the dogs fur, etc) it is fun and terrifying all at the same time.

We have backed off on Lilah's speech therapy. She struggles with even eating the puréed food now. The only time I can get her to eat is when I present her with something she can hold and suck on. Unfortunatley those items are not always the heathiest. There is a fine line between incouraging her to try chunky foods and scaring her away from food because of gagging. The trouble is if we don't continue to work on chunky foods she won't get past the gagging.

The other issue is volume. She has not made the connection between eating by mouth and getting a full tummy. I pray every day that today will be the day she figures it out. I know she'll get there, I just can't wait!