Update..

Hello. I know it has been too long. I'm sure everyone is wondering how things are going. Maybe not...I'm not trying to say you don't have a life or anything. Just because I don't have a life....hee hee. Besides the lack of sleep and the craziness, things are o.k. Believe it or not, just because we are home doesn't mean the roller coaster has stopped. It is still up and down. Olivia has finally taken off. She is chunking up at a whopping 8 lb. 12 1/2 oz. She is really growing well. She has had a few sniffles but nothing big. Thank goodness. She just had her 4 month check up and seems to be doing great! They increased her caffiene and lowered her limits on her apnea machine. She barely has any alarms and I'm feeling more and more secure with her state every day (although I'm not ready to give up the machine). I haven't been asked to...I think they usually keep it for around 6 months, give or take.
Emma is doing o.k. in some areas, not so great in others. She had her eye appointment and they are still stage 2 and the blood vessels have not completely formed yet. They will check them again in two weeks. They are not super concerned yet but if they haven't matured in a couple more visits, we will have to talk about next steps. Emma had a check up today. I thought she had an ear infection. He said he thought it was like swimmer's ear for a baby. So we started ear drops. He was also concerned with her hips. Like they weren't as flexible as they are supposed to be so he ordered a hip sonogram. What's one more sono? He also had labs done to check her blood - for everything - calcium, platlettes, electrolites, etc. We will probably get the results back tomorrow. Her weight gain was not great. We are going back to a feeding schedule to make sure she is getting all she is supposed to. If she hasn't gained enough next week, they will increase her calories. We went to the hospital today for her ear screen with audiology. She had passed in the hospital on the left but not the right. Thank the Lord she passed today. We'll take any good news and that just takes one more thing off the list of stress and worries. I'll take whatever I can get.
How are we doing? O.k. I guess. We have our ups and downs. The lack of sleep does not help. My mom was here and was a big help, especially during the nights so that Mike could sleep and be half way normal at work. She left today for home. My brother is flying in to go to a conference and visit so that is good that she is there. I know I have to take the reigns and lead this life. I guess I just feel right now that twins is one thing. I really think I could handle that. "Sick, Premature" twins is another thing. We have 4-6 appointments a week. It is just going to be crazy for awhile. This week is one of our slower weeks. Today Emma and Olivia had a pediatrician appointment, followed by Emma having her audiology appointment in the hospital, followed by labs in the hospital. Thursday we have a nurse coming to the home for our home visit. Friday we have early intervention appointment for the girls. Next week Emma has a weight check. She has a head sono on Tuesday along with me getting Loren, Emma and Olivia their shots. We have a home visit with the nurse. I think we also have 2 more appointments but I haven't looked at the calender to see what they are. It's just crazy. I took the twins to the dr. today in our triplet stroller. I had one in the front and one in the back with all the equipment/oxygen in the middle.
To be honest, I'm overwhelmed, stressed, discouraged, frustrated and tired. I hate to write in times like these because it's such a downer. I LOVE having my daughters home. I just want them to be o.k. I feel so much pressure for them to thrive. The weight feels heavy on my shoulders. Part of that is just being a mom and part of it is having children with medical issues. I guess I wasn't really looking at having Emma home as taking over all the appointments and sonos. That was the easy part of her being in the NICU. They all came to her. All I really knew were the results. Sometimes I didn't even know a test was being done. Don't get me wrong. I'll take all the appointments I need to just to have her home. I just want her to thrive and gain weight and take off like Olivia. It did take her some time though. I'm sure part of it is just adjusting. We'll see...
It is getting colder so I'm more paranoid with the girls getting sick. I feel like every kid I look at is full of germs, even my older two. It's nothing personal for all you that have children. I look at every door knob like it has little germ bugs on it. My knuckles are bleeding again from washing my hands too much.
So that is enough. I'm going to stop. This head of mine could keep going and going. But I have to go feed my girls again.
What I miss probably the most is interaction. I miss going to church so much. I miss being involved with worship - playing and singing. I miss seeing all these lovely faces - people I've been close to and have helped us through this. I miss my mommy and me group. And yet I miss being myself most of all. I feel like someone not so positive has overtaken my body and attitude and I can't shake it.
And now I've pooped on all of you. This is why I don't want to write when I feel this way. Well I'm being honest and maybe this will let you know how to pray.
This too shall pass.
Please keep praying for Emma. She has been through so much and I'm ready for some of her issues to resolve. Much love to you all! I'll send pictures soon.
Bethany

How people do this, I will never know...

Wow! So I'm definitely sleep deprived. Well, we all are. That is for sure. Between all this machines and learning all the sounds and what they mean and dealing with the oxygen, etc. Wow! I'm exhausted. We are exhausted. We have gone through baby proofing medical equipment 101 with Loren. Yes, she knows how to turn down the oxygen on it. We caught it right away but it scared me to death. So we had to do some adjusting there. We also couldn't figure out how to turn the volume up on one of the machines. Of course, we were trying to figure it out in the dark. The next morning I woke up and was looking at it and of course on the top it gives you all the directions to adjust the volumes on every part of it. Yep, sleep deprivation. I gave Emma her first bath ever! It was good but a little hard since she has the oxygen on her face. The first night we didn't sleep much because Emma kept pulling her cannula out. (That is why we had to turn up the machine). I also adjusted her tubes on tighter. This will all take some adjusting. I just hope it happens sooner than later. I took Emma to her eye appointment today. There was no change. That is good but we really need to pray that her eyes mature and the blood vessels completely form. She will have a head sono in 2 weeks. We need to pray that she is not retaining too much fluid in her ventricals surrounding her brain. That is a concern right now. She will also have a renal sono on her kidneys in a month. We need to keep praying that her calcium levels will go down or that they can figure out what the problem is. Please pray against sickness too. That is obviously a fear of mine with my older two being around my younger two. So I guess those are the main concerns/stresses on my mind right now. I guess being home and out of the NICU doesn't take away all the stresses. : )
I am very glad we are all home though!!!
Have a good night! Must attempt sleep now.
Bethany

Together at last!!

4 months to the day!!! Yes, the girls are 4 months old and are home and together!!! Yea!! Wow! Finally! What a trip we have been on!! To feel like this day was just a dream...like it would never happen. All the twists and turns and never knowing where the trip would take us next. And to finally arrive right here with all 6 of us together at last. What a great day!!!
Today was long and we arrived home about 7:00 p.m. tonight. We left the hospital with our oxygen tank in the red saying refill. We knew we would be meeting the home oxygen guy at our house within 20 minutes so that was great. He said we still had a good amount left when we got home. But it was a little nerve racking for a short while. We spent most of the day doing ultrasounds - brain and kidneys, making dr. appointments, and going over discharge stuff. Emma had done so well with her eating that she was only allowed 20 cc. this morning because she had met her limit. Yep, she is a porker. So we are at home now and all I can say is that we have a lot of cords. Olivia and Emma are on the apnea monitor. Emma has a pulsox monitor. We have Emma's oxygen with the nasal cannula. I feel like I'm forgetting something. It is just a lot of cords!!! Mike knows he is going to up tonight bearing a lot of this with me. He is taking tomorrow off. He hasn't taken any time off with the twins birth so now is a great time! : )
I'm going to get back to them but I thought you would all like pictures. Thanks for all the prayers and support. We know that we will still have to be extremely careful so that they are not put back in the hospital. So just keep praying for that. Also, keep praying for Emma's kidneys, brain and eyes. They still can't figure out why she has high calcium.
Much love to you all!!!!
Thanks again!!
Bethany

Feeds

I'm going to attempt to update this with Miss Loren on my lap. Not the easiest thing to do. Today they changed Emma's eating from every 3 hours with a certain amount to eating when she wants and she has to be between so little and so much by the end of the day. It's in grams so I'm not going to tell you the amount. I think it ends up being around 11 oz. for the day. Well, I went in and fed her. She did well and was resting in my arms. She loves the attention!!! I was getting ready to leave and she still seemed hungry. So I fed her again and she took another whole bottle. By the time I left, she had already met the minimum amount that she needed to take and she still has until tomorrow morning to meet that. I don't think eating is a problem for her. I'm glad she will come home on this flexible schedule. We are pretty sure she is coming home tomorrow but we won't know until she is out the door and in our car. You learn to not get your emotions all out on the line until it's official. Some people ask if I'm excited....I don't know that I have let myself. Maybe it's just learning it from the 3rd child going through this??? Who knows....
Tomorrow will be a busy day. We will have dispatch deliver our oxygen tanks and set up the equipment at home. My mom is coming to help again. Yes she is amazing!!! We will probably spend most of the day feeding the babies along with Alyssa and Loren. The word "schedule" might be a joke right now. We have to centerally locate Emma. She will be on 25 feet of cannula but we won't be able to move the oxygen tank. She will sleep with Olivia in our room in their crib for now. We need to have her machines set up so we can read her sats at all times. If her nasal cannula comes out, the alarm will sound because her sats have dropped. I know this will all be an adjustment but we are so ready to have her home. We will miss eating out. I will need to get my act together and plan ahead for meals so that we can grocery shop once instead of every day. Things will be different but good. We will be pretty confined at least until she is off oxygen. And we will have to be very careful during the winter time with RSV season. But it is just for a season.
Well, I'm off to bed. We'll see what tomorrow brings.
Also - I've already had people speak with us about the bottles that they might try with their kids with the same problems - being too weak to eat the thickened formula without help. We're excited to see how many people this will help.
Please pray for this couple we met tonight. They had twins a week ago and she was 23 weeks along. I don't have much info. but I know it is very hard for them right now, as you could imagine.
I'll let you know how tomorrow goes.

Preparation for discharge...

Emma has really taken off. She took 5 bottles yesterday during the day and they tubed her at night. She takes her bottle between 10 and 15 minutes. With the other bottle it was taking 25-30 minutes. That is really great so she doesn't get worn out. Today they wrote orders for her to nipple every bottle if she wants. They also wrote orders to prepare for discharge in case she takes off this weekend and does well. So we are looking at Monday or Tuesday for Emma to be coming home. Crazy how we were looking at surgery just a week ago. It is wonderful how everything just came together. They will be delivering her oxygen to us and making sure we are set that way. I am taking in her car seat tomorrow for her trial test. I have been trained to give her her breathing treatments twice a day. I know how to give her her meds. She will be on a pulsox moniter along with an apnea moniter. It will be an adjustment but we will get used to everything. We are just beyond ready to get our little girl home!!!! She will finally get to meet Olivia and Loren. We'll pray this weekend goes well. Mike just took in the van today and it needed quite a bit of work. And our swing set/play set was delivered today. So I'm glad we have those two things out of the way. Mom and I really cleaned the house today in preparation before she left so I feel great about that. I painted the changing table doors and I think they are set to be put back on. Mike has been working on the basement and it is coming along. Since we will be confined in the house for the fall and winter, we'll have plenty of time to get more of the basement done.
I'll let you know how the weekend goes. She is ready to come home though!! She is demanding more and more attention. As long as someone is talking to her, she is pretty content.
Thanks for everything!! Interestingly, Emma and Olivia will be 4 months old on Monday. Crazy timing!!

Cookie Swallow

I was frustrated about not doing the cookie swallow because it is the ONLY thing holding us up right now. We have given Emma more time to see if she can handle her feedings and we aren't able to try it. I went in today and spoke with the doctors and we were able to get her in for another cookie swallow. She passed it. This means her milk did not go into her lungs. So tomorrow she will increase her bottles to 3. If she does well, we increase. At least the ball is rolling again. Go Emma! She weighs 6 lb. 14 oz. right now. They are trying to get a lot of weight on her and she definitely looks it. They try to do that with their chronic lung babies.
Olivia is doing really well.
Hopefully we'll all be together soon.
Enjoy the pictures! Emma is the one that still has tubing (oxygen) on her face.
Love,
Bethany
By the way, I'm not leaving Alyssa out of the pictures...she just won't let me take any! Someday I will be to blame for this though. Believe me, I try.
Sorry for the gross/Loren/food one.

No go...

So the cookie swallow was unsuccessful because they didn't get the bottle to work. So now they want me to come in and feed her so they can try it again. I guess they are supposed to call me here soon to see when I can come in. Hopefully I can get childcare in time or it will be during the night so Mike can watch her. A little frustrated but still hopeful. Aughhh!!!