Maybe we should leave...

Mike and I spent some good time with Emma and Olivia today. However, while we were there, they decided they were going to show us their tricks like holding their breath and dropping their heart rates over and over. We got the hint. Once we left, they were fine. I don't know if they get excited when we are around or what. It's like when the Colts play...somehow I feel like if they are losing, it's because I'm watching and as soon as I leave the room, they'll come back. I know it's all in my head.

The girls are doing well. Big milestones today...
Emma has reached 3 pounds. Actually 3 lb. 1 oz. yahoo!!!!
Olivia has reached 4 pounds. Actually 4 lb. 1/4 oz. yahoo!!!
As of a phone call 2 minutes ago, Olivia has moved to room 4. She has been taking her feeds well. Tonight they pulled back 1.8 aspirate tinged with some blood. So they are going to give her a rest from feeds for the night. They just think her tube might be irritating her. She is still waiting to stool on her own so that could be bothering her too. But she is at 1 liter of oxygen and doing well. She was sleeping while we were in there. The weight gain is great for her.
Emma is currently at 52% oxygen which is fabulous!!! They suctioned her and she pooped a ton and immediately starting satting higher so she kept lowering her oxygen. Yea!!! They are slowly weaning her off of the nitric oxide (down to 3) which she seems to be tolerating. They will do a blood gas in the morning to see how she is doing.
I'm so proud of my girls!!! They are doing so well!!!

The other news we received today is that I don't have cancer. I had an MRI for the twins in Cincinnati. During it they found a "massive cyst" on my left kidney. So after the twins were born, I had an ultrasound and I've been awaiting the results. Mike and I walked in today and the first thing out of the doctor's mouth was "you don't have cancer". He said I have a "fatty tumor". Why can't it be a skinny tumor? I mean, seriously...come on. Just kidding. Bad joke. Anyway, my kidney looks like a tire that has been curbed one too many times - how it bulges on the side. Well, that is how my kidney looks with some kind of calcium growth (not sure what that means). But he said the hospital wants me to have a CAT scan to see exactly what it is and he wants to see me every year to keep an eye on it. He said that it is nothing to worry about. I'm scheduled for my CAT scan in December.

So we had a pretty darn good day!!!
Let's keep them coming!!

Have a Happy 4th of July!!!
Love,
Bethany

Not much to say...and that's o.k.

So there is not much to say today. Olivia is doing great! She is taking all her gut priming feeds by bottle and doing well with it. They lowered her oxygen to 1 liter and she is doing well with that. That is about it.
Emma is holding steady. Her blood gases this morning were good as far as the ph level. The CO2 was not the best so they brought up her pressure a little from 32 go 34. That seemed to help. They lowered her nitric oxide from 5 to 4 and she seems to be doing well. She does so well when Mike is in there visiting her. The nurses said tonight that if she keeps reacting like this to Mike being there, they are going to tie him to her bed. Hey, whatever it takes right?
Alyssa and Loren are going to visit Grandma and Grandpa Miklik for the weekend so that will give Mike and I some good visiting time with Olivia and Emma. Keep you prayers coming!!
Love to all,
Bethany

I have my hands full....

Let's see how well this works...I'm going to attempt to post and have Loren climbing all over me. She is into everything!!!! Maybe it's a good thing these girls are in the NICU. I'm definitely going to have my hands full. Oh wait, I already do. :)

It's amazing how much a day off can feel like. Going into the NICU today, I felt like I hadn't been there in a week. They are slowly weaning Emma and so far she has tolerated it. We'll continue to pray that she does well. She is gaining huge amounts of weight right now. She is 2 lb. 14 1/2 oz. One of two things.... (1) - her bed scale is off OR... (2) - My hind milk has a huge amount of fat in it. Only time will tell if her weight amount is accurate. If it is then we know that the hind milk is working. The doctor spoke with me today. We knew that Emma had had a grade 1 blood on the right side of her brain at birth. Then we knew that she had a resolving grade 1. Well, they did another brain ultrasound at 34 weeks and it showed a grade 2 on the right side of the brain. The left side had no signs of bleeding on the brain. It basically is telling the damage that occurred either while I was pregnant or since at birth. It is a clot now that is resolving. So we don't know the long term affects yet and we probably won't know until about age 2 or 3. We'll just keep praying for her that she will not show any signs of damage.

Olivia had a good day. She is just shy of 3 lb. 13 oz. I came in today and the first thing they told me is that they were starting her feeds today instead of tomorrow. Yea!!! I took her temp. The nurse in orientation changed her diaper and it was clean. They had chipped her because she hasn't stooled for about 7 days. Of course, she is not eating either. But I guess you can still stool on TPN. I was able to kangaroo her. It felt so good to hold her again!!!!! She was so snugly!! She was moving around some. I also kept smelling something (like medicine but weird). They said she was probably passing gas. After I was done holding her, they checked her diaper and that girl had let lose. I can talk about this because it's exciting when their body functions work. Anyway, after she changed her, we fed her her small amount of 2 1/2 ml. through a nipple and she sucked it down within a minute. A couple weeks ago, when they fed her through a bottle, it took her 20 minutes to drink 4 ml. So she did an awesome job!!! Afterwards, she just laid there and smiled. I wish I had a picture of that. Poop and eat - can't get better than that! Yep, my husband is probably embarrassed now. Sorry Honey!

Well, that is all for today. We'll find out how Emma tolerated her drop in Nitric Oxide (10 down to 5) in the morning. Please pray her blood gases are good.

Love and Goodnight!!
Bethany

Something little to share...

I did write another blog below but I ran across this tonight and wanted to share it with you. My good friend sent this magnet to me after I had Alyssa as we were going through the same thing with her. It's just something to think about. Here goes...

i beg you...to have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. don't search for the answers, which could not be given you now, because you would not be able to live them. and the point is, to live everything. live the questions now. perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer....
(rainer maria rilke)

A day off....

So today I took a day off. It was my day with just Alyssa and I just gave her my time. It was great! We went swimming this afternoon for a little bit and it was refreshing. By the time you drive to the NICU, take the long walk to the NICU, scrub up, see the girls, find out all the details from the nurses and come home again, you're exhausted. I think more mentally than anything. So it was nice. Of course, I called in at least 3 times to see how they were but it was a nice break and I, thankfully, did not feel guilty. That was nice.
Then I drove to meet my sister that lives in St. Louis to get Loren back. It was so good to see her squishy face. She looked at me like I looked familiar but she couldn't place it. (It has been a week). But she came around pretty quickly.

Emma and Olivia are both doing pretty good today. Olivia's infection (NEC) is pretty much gone. They are giving it one more day before they start feeds. I'm excited to get that started again. She weighs 3 lb. 10 oz. She lost some from not eating. Hopefully we'll pick up right where we left off. If nothing else gets in the way and things go smoothly, I think we are looking at another 2-3 weeks before she comes home. Again, I'm trying to get things in order. That helps keep my mind from stressing over them so much.
Emma's oxygen is down to 64-78%. Her pressure has gone from 38 to 33 today. They will try her down to 32 at 3:00 a.m. They are weaning her slowly. Just keep praying that she holds strong and tolerates this weaning. She weighs 2 lb. 14 oz. That was a pretty big jump so they are not sure if that is accurate because they just put her in a new isolator. I'll take that weight.
We'll wait and see what the morning holds for our girls.
Sweet dreams little ones!
Love you,
Mommy

There and back again...

There and back again...by Bilbo Baggins. Yes, that is how our weekend was. Every time I started to email, something changed. Friday Emma was doing great. Oxygen in the 40's, x-rays looking better, etc. Friday night Mike and I had a great night out and stayed at the Pere Marquette (a gift from Mike's coworkers - Thank you!). It was so relaxing and a much needed get-away. It was so nice to relax and talk about different things - some about the girls. We also just cherished the silence. Saturday morning we went to the hospital. Emma was not doing well. Her x-ray was not good. She had gone up to 100% oxygen. We were there for her rounds and we spoke with the doctors about her situation. Again we were frustrated because we can't fix it and neither could they. Everyone is just trying to figure her out. So they decided to tweak a couple different settings. By noon, they looked better but no huge improvements. By night she was not doing well again. This morning I woke up and called in. She had improved during the night and they had taken her off the Jet. Wonderful news!! But by the time we went in, her x-rays were bad and her blood gases were not good. I called in tonight and she is back on the Jet. I'm sure even as you read this, you are like "Awesome", and then "Bummer", then "Go Emma", etc. I just want to take her in my arms and tell her everything is going to be o.k. Tomorrow is 40 days and I haven't held my baby. And as long as she is on the Jet, I won't. I pray that she will continue to gain weight and eventually be able to take on this lung issue and kick it in the butt. I'm telling you, if I ever catch her smoking a cigarette when she is a teenager I'll kick her butt myself. :)

Olivia is improving with her x-rays and is still no feeds and on antibiotics. Her test came back negative for Meningitis which was good. They had told us she didn't have NEC but as of this morning, they said they are back to that and are continuing to treat her for that. Go figure! I guess as long as she is getting better, I don't care what she had. Tuesday will be her 7th day of no feeds and being on antibiotics. They might start gut priming on Wednesday if all looks well. Gut priming should take 4 days and then she can start her feeding schedule all over again.

We took Alyssa in to see her sisters. These are pictures of them. Loren still has never seen her sisters. Thankfully she doesn't really notice right now.

My wonderful and awesome best friend from North Carolina, Mir, has gone out of her way and made this awesome blog website for me. She went back and took all my emails and pictures and put them into this. Thank you Mir Elizabeth!!!! I love you!!! You are truly the best!!! So feel free to post comments. I love to read emails/feedback from people. We are really encouraged by what we read. Sometimes it's all we have to make it through the day. Don't feel like you are bothering us. We need it!

Well, my day is done. Enjoy the pictures and please keep praying for Emma and Olivia. As of right now, that is pretty much all we can do.

Day 37...

Day 37....

Hello! My cousin Amy and I were talking yesterday about this exact scenario that happened with Olivia. The frustrating thing about the NICU and the roller coaster of emotions is not knowing for sure what is going on. Here is the scenario...Olivia was showing many symptoms for NEC. So they started treating her for it even though they are not 100% sure (which is good because you don't want to be behind - you want to be on top of it). So knowing NEC and how severe it is - a few facts - 25% of all babies that get it die from it. We came close to it with Alyssa. It can go bad fast. My sister's coworker lost their child to NEC. The nurses said the baby was acting fine and four hours later, the baby died. My sister's next door neighbor, whom I've gotten to know, lost her daughter to NEC. So it is a bad deal. When we found out they were treating Olivia for it, I freaked a little inside. You start feeling a little better convincing yourself that they are on top of it and got it early - which is true and good. Well, today they did an x-ray and her intestines are worse - more inflamed and dialated. However, there were no air pockets in the wall of the intestines which would indicate that she does not have NEC. Good news - up in the roller coaster and you breathe a little. But...there is still something wrong and we're back to searching for an answer (I feel like we are on "House"). So then they tell you that they are going to test her for miningitis - and on down the roller coaster. Miningitis is just as bad in different ways. Again, if caught early then they can resolve it with antibiotics. With this, the recovering time is twice as long. She would be on antibiotics for at least 2-3 weeks. If her test comes back negative, we go back to square one and look at our other options. It's not that the NICU is doing anything wrong - cause they are not - It's just how it works. In some cases, they can't figure it out. That's even more frustrating. Just sharing a little of the ups and downs within the process.

Olivia - they are drawing spinal fluid from her back this afternoon. I should know soon the initial outlook. If the fluid is clear, it is probably not miningitis and we go back to the drawing board. If it is cloudy, then it might be. Either way, we won't know the final results until tomorrow . They are putting in a Pickline today. She is just so sweet and wants to be touched. She is comforted by having our hands on her and holding her hand and just feeling the warmth. I came in today and she was crying. I picked up her pacifier and gave it to her and she immediately grabbed my hand and I just put my hands on her and she settled right down. They went up on her oxygen to 3 liters to give her some help.

Emma - Emma is doing well. While I was pregnant, Emma was very stressed - especially at the end. That is why I had to have her early. When she was stressed inside, her pulmanary valve started to restrict (Pulmanary Hypertension). This clamping down is not allowing the oxygen to get to her lungs like it should. They have been treating her with Nitric Oxide and it has been helping. The Nitric Oxide dialates her pulmanary valve - opening it up and allowing oxygen to flow through to her lungs. Since they have been giving her that, she is doing much better. So the Dr. thinks that that is the reason for her lungs collapsing and being poor - not the infections. She is doing better and they are conservatively weaning her down on the jet and vent and nitric oxide. They have decided to do this by watching her visually instead of just reading the gases and tests. This way they don't drop her too fast. They also are giving her a tiny bit of sedation (not the kind that stops your gut from working). This will help her relax and heal a little bit more. She tends to get all fiesty and fights the jet. The jet is trying to help her breathe and sometimes she won't let it. Imagine that Sweet Emma. : ) She is still under mask, glove and gown. She has to test negative twice for the infection to come out of that restriction. Each test takes 3 days. So we are talking 6 days of waiting once she is done with her infections. She is starting to like some handling...like being patted on the bottom.

I love those girls!!!

I don't know what is worse - Not holding a baby at all or being able to hold one and then have to stop.

I'll write as soon as I know the results of Olivia's test.