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!

Monday, October 31st

Ainsley and Benson say "Happy Birthday, Aunt Liasa!"

Ainsley has continued to have very small amounts of blood in her stool. They did an x-ray last night and another one this afternoon which were normal. The doctor thinks she is having irritation from something and he feels it is most likely milk protein. He is putting her on Similac Alimentum formula which has polypeptides instead of proteins so it is easier to digest. He wants her to take that for "a few" days and then we can gradually transition back to breast milk and see how that goes. If she would start to have blood in her stool again it is possible she has a milk allergy. She could still breastfeed but I would have to cut dairy out of my diet. Hopefully we won't have to worry about any of this and we'll restart her on breast milk in a few days without problems. The doctor does still plan on discharging her tomorrow. We are of course excited but it is bittersweet leaving her brother here.

Benson is doing alright. He really hasn't seemed to make progress but also isn't getting any worse. Some feedings go well and others don't. We are still hoping that "the light bulb" will come on soon. We still feel he is refluxing, actually we know he is. You can sometimes see it come up into his mouth during his gavage feedings. However, the nurse told us they won't give them anything for it unless it is documented on a swallow study and Ben happened to NOT reflux during his 5-10 minute swallow study, though he does about every other time. Amy, the speech therapist did not stop by today so hopefully we will get to talk to her tomorrow.

I cannot believe tomorrow is November!