Still going well.....

Things are still going well.
Emma is up to 3 lb. 3 oz. She has tolerated everything they have done so far. Her pressure is down to 29. They will lower it to 28 at 3:00 a.m. and do another blood gas at 6:00 a.m. She is in the 40's for oxygen. Doing reall well!!! The x-ray from yesterday showed much improvement. The doctor said it was the best he had seen from her. She is also liking to be touched now. They said that is a sign that she is feeling better also. Go Emma!!!
Olivia is still off of the oxygen. She is still breathing fast so they can't give her all her feeds through the bottle. She had one bottle during the night. Hopefully this lasix will kick in and she will start to breathe easier. She is doing great with her feeds as they climb up. Go Olivia!!! She weighs 4 lb. 7 1/4 oz. I'm not sure how much of her weight gain they are contributing to fluid buildup. Time on the lasix should tell.
Mike and I and the kids are doing well too. We had a great weekend to ourselves (just Mike and I) and it was much needed.
I'm starting to get things ready for the girls to come home. I washed all their preemie clothes today. I set up their changing table so that is good to go. Their crib is already set up in our room so I just added some stuffed animals to it. I think we are ready whenever they are. We get closer with each passing day.
Much love,
Bethany

Looks like we are holding steady...

Hello. We were able to take Alyssa to the NICU today. It looks like Emma and Olivia are holding steady right now.
They've lowered some settings with Emma and she is adjusting to them. They took away the nitric oxide today. This is good and we will pray that she can adjust to do without. She is about 60% oxygen, which is up because they took away the nitric. That is o.k. She might go down on it overnight as she adjusts. She had an x-ray this morning and it was better. Her feeds are going great as always. She likes her new big girl bed. She loves to be swaddled and just looks around. She is very sweet!!
Olivia is still off of oxygen but her body is trying to adjust. Because she has chronic lung disease, her body is holding some more fluid and she has started to sleep more. She has not been taking her bottles because of it so they have been tubing it. She is just tired. They also noticed she had gained a quite a bit of weight (90 grams). They are again thinking it is partly fluid. So they put her on lasix which should help. They don't want her back on the oxygen so we'll see how this helps. Some babies that have chronic lung disease will go home on some kind of diaretic. She very well might. She had a stool but it was because they chipped her. Hopefully she will start stooling on her own. She did start her feeding schedule and by Thursday, if all goes well, she will be on full feeds at 36 ml.
So we will just see what another day holds. Please keep praying that their lungs will continue to heal and that they will have strength to do what their body needs.
Love and Goodnight!!
Bethany

What a big day!!!....

We have had a really good weekend. Mike and I have just enjoyed being together knowing our time alone is going to limited real soon. We painted our girls bathroom (also known as our guest bathroom) today and that felt really good to get that done. Tomorrow hopefully we are going to paint our half bath and baby proof the kitchen. I'm trying hard to get stuff done while I have the time. I just know the girls will be home soon.

We went into the NICU today. We saw Olivia first. The nurse greeted us and said that she had gained weight. She said she was going to go check the chart to convert the grams into weight. She came back and told us that she weighed 4 lb. 3 1/2 oz. She is really growing!! I kept looking at Olivia's face and it just looked so full. She is filling out so much. And yet there was something different...I couldn't put my finger on it...her face just looked different....her cheeks just this perfect shape....and then I looked at her nose and it hit me....I said "Oh my gosh...Mike..." and he just looked at me. I was wanting him to guess what it was that I saw but I didn't wait for him to guess. I said "Her nasal cannula is out". Olivia had been taken off of the oxygen at noon today. The nurse thought the previous nurse had told us but she hadn't. So I was surprised and what a great surprise!!!! She was doing great without it!! Hooray!!!! Tomorrow is her last day of gut priming. Then she starts her feeding schedule and they will work up to full feeds. She will start at 4 ml. and work up to about 30 ml. (maybe more). It's actually probably 40 now that her weight has changed. I'm really just guessing. But anyway...I'm sure she will do great. So far she is still taking all her feeds by bottle. Yea!!!

So then we walk into Emma's room. As we get closer, Mike says "Bethany...look!" Emma had moved into a big girl bed. Another surprise!!!! She was laying there all tucked in wide-eyed...looking around the room like this is new. The nurse said when she moved her into her bed, she had her eyes open wide for at least an hour just looking around. Emma now weighs 3 lb. 2 1/4 oz. Emma is doing incredible being weaned off this stuff. Her nitric oxide is down to 1 and will come off of that tomorrow. Her pressure is at 33 and her oxygen is in the 40's - 50's. As they move her pressure down and she adjusts, her oxygen will go up some but that is still good. Her blood gases have been good. She will have another blood gas and an x-ray at 6:00 a.m. They haven't done an x-ray in about 5 days so they want to see what is going on. I'm anxious to see what tomorrow holds.

I'm so proud of my girls!!! They have come so far.

You know...I was going to share this yesterday with my email but I didn't. During this whole process I have just really been wrestling with and questioning what faith is and the purpose of prayer. It's hard when you pray over your baby and she gets worse or you don't see anything happening. You start to wonder if you have enough faith. I believe God has a plan for our girls. But then I start wondering if prayer really changes anything if He has an ultimate plan. So then you start questioning the purpose of prayer. I appreciate Rob Bell, who wrote the book "Velvet Elvis". In there, he encourages people to dig into the Word and wrestle with questions and find out more and don't just believe it because someone says it. Find out for yourself. It makes way more of an impact when I go through it myself and mull it over. Anyway, I've prayed many times for our girls and so has Mike. But two nights ago, Mike and I were visiting with Emma. I just laid my hand on her incubator and prayed that God would heal her lungs. I asked God to heal her body. It was the first time I think I really believed He would. That was when she was 76%. The next day she was in the 40's and getting better ever since. I'm not saying it was that prayer or because it was me....it was just so cool for me to experience that faith and feel what I felt behind it. I had prayed that prayer many times but I hadn't really felt that before. I shared that with Mike the next day and he pointed out this plaque that we have had and are going to put up in our bathroom. Across the middle it says "FAITH" really big and then in the background it says "Faith is being sure of what we hope for and certain of what we do not see". Hebrews 11:1 The verse really speaks for itself and certainly spoke to me. That is what I had been struggling with. I am certain that God is going to take care of us no matter what the outcome is. I have faith that God is bigger than any plans I have. I have faith that God is our provider, our healer and He continues to hold our daughters in His hands. And in that I can find peace which I have through prayer. Going through this journey, I truly believe God has been trying to teach me something. I have been wondering what but I think I know now. I don't claim to know all the answers to anything. I just know that sometimes you have to question things and figure it out on your own to really understand it. We appreciate all the prayers that have been coming our way. It has been very important to have your strength behind us because we don't always feel strong and we feed off of your strength. It has been the support underneath us that has carried us through. Your prayers have made a difference with our whole family and we love you all!!

They don't understand what has made the difference with Emma and her little lungs.... I do.

Thank you! and Good night!!!
Love,
Bethany

Turning a corner?...

So maybe we are turning a corner...

Emma is doing extremely well. She has gone from 78% oxygen two days ago down to 28% today. Her blood gases are so good that they have been lowering all her settings. They have lowered them again and she is adjusting to that so her oxygen is up a little to 40% but that is still great. They will leave her where she is at now and do another blood gas at 6:00 a.m. and see where she is at. I'm just praying she stays strong where she is and the blood gas will be good. Again, slow is the best right now for her. Adjusting things and letting her get used to them is the key. I'm so proud of her. I do feel like we are walking on eggshells though.

Olivia is doing great too! They were going to take her off of the oxygen today but they are going to give it one more day since they started her feeds again this morning. She is still struggling to stool on her own, which in turn affects how much she is digesting her food. We need to keep praying for her during this gut priming process.

Here are some pictures to enjoy! Alyssa and Loren went in my room and put on some of my clothes (thank goodness it was clean laundry) and came out holding hair brushes. It was very cute!!! Loren looks like she is in charge here.
I'm very tired and going to bed.
Love you all,
Bethany

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