I Tried

Ben had an appointment with the Pediatric Neurologist today. Everything went well and his exam was normal. The doctor does want us to see another Pediatric Neurologist that specializes in stroke. There aren't any here in Des Moines so we will be traveling somewhere else, likely St. Louis or Denver. He would like to find out more information about why the stroke happened. At this point everything remains the same and there is no treatment. That being said, there also are no signs of the stroke affecting him at this point either. Of course he could still develop complications months or years down the road.

So, since we were actually going out of the house we decided to dress up a little today. Usually we just wear sleep and play outfits at home since they are easier to change diapers in. However, the twins got LOTS of adorable clothes from so many people that love them so every time we go somewhere we try to wear something nice since they'll grow out of them soon!

BUT...Ainsley and Benson were NOT feeling the photo shoot today. I took about 30 pictures and this is what they ALL looked like:

And this:

The only ones where they weren't crying had these:

I tried to get good pictures to share with you all! These will just have to do - haha!

Oh, and yes, those are fur boots Ainsley is wearing - thanks Ashley!

Game Day

Ainsley and Benson are ready to watch the Hawks play!

Unfortunately, this is how we feel about how the Hawks played.

This makes me smile!

Who Knew?

Who knew...

Babies could fart so loud?

Their farts could smell so bad?

Hypoallergenic formula could be so expensive?

Four consecutive hours of sleep could feel so great?

Something so little could be so loud?

Walking outside to get the mail could so exciting?

That I could love these two babies so much?

Visitors and Birthdays

Sunday we had a few visitors and celebrated a couple birthdays!

Jeremy's Mom and Dad brought his Grandma and Grandpa Y. up from Albia for a visit and Aunt Debbie came over with some birthday cake for Grandma's birthday and Terry's birthday Monday.

Happy Birthday, Great-Grandma Ruth!

Happy Birthday, Grandpa Terry!

And thanks, Aunt Debbie for the cake! It was delicious!

Meeting People

Happy Humpday! Today the babies and I went to Newton - their first trip to Mommy and Daddy's home town. I had a hair appointment this morning so Grandma Barb watched them at Great Grandma Betty's house. They got to meet a few family members for the first time including my Cousin Ashley, her daughter Zoey, my Aunt Shellie, and Uncle Daryl.

Then we went over to my Granny Viva's and they met her for the first time. I think she was pretty excited.

She looks pretty comfy to me.

Ben wasn't quite as excited. Ha - he calmed down pretty fast. Don't worry Granny - he loves you!

I'm excited for Ben and Ainsley to meet more of the family next week at Thanksgiving!

First Outing

Today we had our first outing as a family. We went to the pediatrician! So exciting, huh? We also stopped and got some lunch at Panera to bring home, though the babies just waited in the car with Dad.

One Month

Benson and Ainsley are one month old!

Alright, they are actually one month and two days old. We wanted to wait and take their one month pictures at home once we knew Ben was coming home. I didn't get it done before the sun went down so the lighting isn't the greatest. We'll try to do better next month!

It is so entertaining to put these two on a blanket together and watch them. I could literally watch it for hours.

Ainsley: You wear newborn diapers and newborn clothes. They fit you well for the most part but are a little long because you are sort of short and some things are hard to get over your big head! You eat every three hours now with your brother but you could go four easily. You don't get too excited about much. You don't even cry much when you are hungry and you don't mind having your diaper changed or taking a bath. You are VERY easy going.

Benson: You wear newborn diapers and newborn clothes. You eat every three hours and you let us know when it's time! When you wake up and want to eat you want to eat NOW. You are a little more fussy than your sister but usually stop as soon as someone picks you up - little stinker! I hate to say it but you are a little more high maintenance than she is and you cry when you have your diaper changed, your clothes changed and when you have a bath.

I hope to include weights later this week when we go to the doctor for Ben's first check up.

Home!

Our family is FINALLY all home!

Friday, November 11th

Unfortunately, we are not at home. This post is coming to you from the hospital. We were SURE we were busting out of here today but Benson had other ideas. He had been eating GREAT all day and all of our discharge paperwork was in order. Everyone who needed to see us before we left had come by. Then about 9:30 last night Ben decided he didn't really want to eat. Jeremy changed his diaper and there was blood in his stool. Sounding familiar? He would start to cry after every few drinks of milk that he took. They did an abdominal x-ray and he had dilated bowel loops. This can be caused by lots of things but it basically causes a tummy ache. They had to make him NPO which means he can't have anything to eat. They started an IV and drew blood for several different tests. They swabbed his nose for RSV. At this point all of his tests are coming back normal. The most likely cause of his bowel trouble? Cow's milk protein sensitivity. He is now on Alimentum formula just like Ainsley had to have with her bloody stools. Like her, he can also transition back to breast milk fortified with Alimentum eventually. Luckily we only have to use one teaspoon per 90ml of breast milk since this stuff is $27.99 for a small can!

So he is now off of IV fluids and is eating ad lib on demand again. He has eaten three times since this ordeal and hasn't been taking as much as he really needs to but we are hoping he will get back there soon so he doesn't have to have a feeding tube put back in. I'm hoping he's just a little tired since it was a pretty rough night last night - for him AND for mom and dad.

At this point we do not have any idea when he will be going home. He has another x-ray tomorrow morning so we are hoping for good results on that. If it is good and he gets back where he needs to be with eating I am hoping he'll still get to go home in the next couple days.

P.S. - The twins are ONE MONTH OLD TODAY! Jeremy and I will be doing a little one month photo shoot tomorrow!

Thursday, November 10th

It's been a few days since I blogged - it has been a little hectic with one baby at home and one in the NICU. But that may be over soon!

Last night Ben got his feeding tube out! He has been eating well, taking 45-55ml. He is now ad lib on demand so he can eat what he wants when he wants going no longer than four hours between feedings. He has to maintain a minimum amount but so far is doing great. The doctor said he will be able to go home TOMORROW if he keeps it up! Praise God!

Our handsome son without his feeding tube!

Ainsley is doing well, too! It will be interesting to get them on the same schedule once they're both at home. Sabrina - I will be soliciting your advice on this!

Funny story - last night Jeremy was getting ready to feed Ainsley and I was pumping. He came in our room very irritated and asked me "What is Ben eating?"
"Ben?" I asked him.
"Yes, what is Ben eating?"
I said, "Breast milk fortified with Neosure."
"Do we have that?"
"No."
"Oh..." and he walked away.

I asked him about it later when he was more awake and apparently he thought he was feeding Ben instead of Ainsley. Haha! Need. More. Sleep.

I hope everyone is having a good week - tomorrow is Friday!

Monday, November 7th

Thank you to everyone for all the messages, comments, texts, phone calls and thoughts and prayers. I've said it before but we truly appreciate them so much. We are so thankful for all the amazing and supportive people in our lives.

Our world was turned upside down on Saturday by the news of Ben's stroke. We didn't know what to think. But God has held us up. We are moving forward. We can't worry about what might come. We can only love our son unconditionally.

Ben is having quite a few tests to try to determine the cause of his stroke, however, we may never know what happened or when. He just went down for his second MRI to look at the arteries and veins in his neck and head. He had an echo to look at his heart because there are some heart problems that can lead to blood clots that cause strokes. He will eventually have blood tests to check for any issues that may cause clotting abnormalities. I will also have my OB run tests on my blood because I may have a clotting abnormality which could make it likely that any other babies I carry could also be at risk for stroke.

At this point the doctor's are doing everything they need to do to determine what happened but there is nothing "to do" at this point. As he grows and gets older he will be followed closely developmentally to watch for delays. He will follow up with the neurologist. He'll have his eyes examined. He may see a hematologist. He may need physical therapy if there are motor issues such as tightening of muscles on his left side. Right now though Ben's care doesn't change. We are continuing to work on eating with him and as soon as he gets that down he gets to go home. He has taken a couple full bottles and more partial bottles. He can now attempt to bottle six times per day. He is definitely making progress. He seems much more coordinated with his suck/swallow and he is less messy. We still have no idea when he might get to go home but we are quietly hoping for next week.

Check out those chubby little fingers holding his monkey! He is up to 6lbs 9oz!

Ainsley is doing well at home. Though I shouldn't really say "at home" since she still spends most of her time at the hospital with her brother. She is eating and sleeping well and really only fusses when she gets hungry. We are transitioning her back to breast milk from the Alimentum formula and so far no problems.

Doesn't she look just thrilled to be having her picture taken!

Thank you all again for your continued support!

Friday and Saturday, November 4th and 5th

I'm having a hard time starting this post.

I think I mentioned Ben might be having an MRI. His speech therapist recommended it based on his uncoordinated suck and swallow when she watched him bottle feed. Everyone we encountered thought it was just due to prematurity and being a boy and a twin. All those things can delay feeding. So the doctor went ahead and ordered the MRI basically because "Mom and Dad are getting impatient" and he was willing to do it to rule out anything abnormal and help to make us more at ease.

Friday the MRI was scheduled for 6:45pm. It got pushed back to 7:20pm. They were backed up once he and Jeremy got down there and they didn't get done and back to the room until 9:00pm. At that point the transport nurse told us that the technician who performed the MRI wanted to repeat the MRI with contrast in the morning. At this point I felt like something was wrong since they wanted to do more testing. Of course no one could tell us any more information since there was no doctor to read the results.

Just before 7:00am today the doctor called me at home. He asked if anyone had given me the preliminary results from the MRI and I said no. Jeremy had already left to go to work to proctor the SATs so it was just Ainsley and I at home. He told me that he did see that there was a significant difference between the right and left side of Ben's brain. He said he would have a Pediatric Neurologist come to see Ben and look at the MRI and decide what further test were needed and that they would not be doing the MRI with contrast until the neurologist saw him so that he could determine exactly what tests he wanted.

At this point I talked to Jeremy and filled him in on what was happening and then called my mom who was already planning to come up at 8:00am to go with Ainsley and me to the hospital.

I was sobbing and felt like I could throw up.

I literally fell to my knees on my bedroom floor and prayed for my son.

When I arrived at the hospital the doctor came right down and showed me the MRI. It is very clear that there is a large area on the right side of Ben's brain that has been affected. Somehow and at some point blood flow has stopped to that area. He is optimistic because they were surprised by this finding. Ben hasn't had any symptoms of having anything wrong other than not picking up eating very quickly. He hasn't had any seizures which is how babies with this usually present. He also said that babies that are so young are able to recover well from this, much better than you or I would be able to.

This afternoon the pediatric neurologist came to see us. He defined what has happened as a Perinatal Stroke. It could have happened before he was born or after. He said it looked like it had been at least 5-10 days since it had happened. At this point it is impossible to tell what the long term implications will be. It could result in severe motor disability or cerebral palsy or it could have absolutely no repercussions at all. Over half of all infants that survive neonatal stroke are entirely normal at 12 to 18 months.

We have prayed A LOT today. And one of our prayers has already been answered. We of course prayed for peace during this ordeal. That God would give us serenity to deal with whatever may come and help us to be calm so we can be good parents. At some point today an amazing peace has come over me and I KNOW that everything is going to be alright. Our son is perfect.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts, God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
Psalm 139:13-18

Thursday, November 3rd

Ainsley had her first appointment with the pediatrician today. It was pretty uneventful and everything went well! She weighed 5lbs 13oz up from 5lbs 8.8oz at her last weight check at the hospital. The doctor is fine with her going back on breast milk in a few days since the blood in her stools has stopped. [Random Thought: Is it weird to read about my kid's poop?] However, the doctor does want me to avoid dairy products. While it seems easy - no milk, cheese, etc - it is actually a lot harder than I thought. There is dairy in everything! I was looking at cereal at the store and the first kind I picked up had dairy in it...in dry cereal! If anyone has any experience with this PLEASE let me know. Of course, Google will also be utilized.

Here is Ainsley after we got home from the doctor.

Ainsley and I went down to the hospital to see Ben before Dad got off work and then he met us down there. Ben is doing alright and we may be starting to see some improvement since they changed him to Enfamil AR. He is now allowed to bottle 4 times per day and when I fed him at 3pm he took 39ml of 50ml. The doctor stopped by this evening and talked to us. He said that a simple change to this formula can sometimes make all the difference in babies who have reflux. However, if Ben isn't taking any full bottles by tomorrow he will probably order an MRI. I honestly don't know exactly what they are looking for so that will be a question for tomorrow. He did say sometimes it takes babies until they are 40 weeks corrected to get the hang of eating. That's November 15th so we are hoping it's a little sooner but we'll wait as long as we have to. Though watching my maternity leave tick by and not having both my babies at home gets harder by the day.

I didn't get any pictures of Ben tonight. I have been a little unfair in the picture taking lately so I'll have to make up for that when Ben gets home - he'll just love me dressing him up and taking his picture I'm sure.

Thank you all for your continued support!

Wedesnday, November 2nd

Today was my first day home with Ainsley and it was A.MA.ZING! It is so nice to be at home but we did miss Ben. We can't wait until he gets home. Dad went down before work and fed him and we came down after and are hanging out through his 9pm feeding. He was changed to formula today with rice to make it thicker. This is supposed to help with reflux. He had his first bottle of it tonight at 6pm and did well. We are hoping this will be the "answer" to his problem of not eating but we'll see.

Ben weighed 6lbs 0.2oz tonight!

Tomorrow Ainsley has her first appointment with the pediatrician. It is at 8:40am and she eats around 9am so Mom's a little nervous about how that is going to work but we'll try to figure something out!

Also, I'm not sure how people figured out this parenting thing before Google! I have used it to look up more things than I can count.

Thank you all for your sweet comments and "likes" on Ainsley's picture last night on Facebook! It is so nice to know we have so many people rooting for us!

Tuesday, November 1st

What a day! The twins are three weeks old today! And Ainsley came home! We kept joking about how we felt like we were stealing her or going to get in trouble for taking her with us. We got her all dressed up in her coming home outfit and then our primary nurse, Leanne had to take her around and "show her off" to everyone before we left. She was pretty stinking cute if you ask me!

Not super psyched about all the pictures Mom was trying to take.

We had a great night at home with her and everything has went very well. It will be so amazing to have them both home. It is just so much more comfortable to be in your own house than at a hospital. I told Jeremy it was so nice to walk around barefoot! It really is the little things.

Ben is still working on eating better. The doctor talked about possibly trying some Prilosec or something for reflux in him if he doesn't start making some improvement. All along everyone has been very nonchalant and told us he'll figure it out eventually but I think they are starting to see that there might be something else going on besides prematurity even if it is just some reflux. We continue to hope and pray that he will pick up the eating soon. I hung his going home outfit where he could see it for a little inspiration!

Love him in his monkey outfit with his monkey Wubbanub!