Check up

Well... we had a really good visit at the pediatrician. Loren is in about the 50th precentile in weight, height and head circumference. Her visit was very easy.
At Emma's last weight check there, she weighed 7 lb. 5 oz. Today she weighed 7 lb. 8 1/2 oz. Definitely could be gaining more weight. We talked about her reflux and how she was eating great but not keeping everything down. So we are stopping the zantac and switching her to previcid. I'm very hopeful that this will help. She will also be on preemie formula for a year. That has higher calories and has some extra stuff that she needs. I hate that it is so expensive but it will be worth it for her health. It was great just to get started in trying to fix this reflux so she can gain more. She is doing well otherwise. I hope this next week she picks up some more. Her next visit is next Thursday along with her eye appointment that morning.
I'm calling it a night. I'm tired. Good night!

Letting go...

Why is it that we have so much trouble letting go of trying to control every aspect of our lives? I have really struggled to write this past month because I feel like I have nothing positive to say. Just wreaking with discouragement and negativity. Focusing on the "I can't", feeling like I need to fix another problem, feeling like my life is over. These discouraging voices in my head. Ugh!!! I just couldn't kick it. And yet talking to God meant that I would have to give up control which would only give me peace and make me realize that He is in control and I don't have to fix it. And yet the stress is overwhelming. Needing to prove that I can take care of my child and scared that if I don't succeed, she will be taken from me and put back in the hospital. All the pressure boiling up like a pot of boiling water and yet I'm the frog that has been in there from the beginning just getting used to it getting hotter and hotter so I don't jump out and then I'm gone.
Mike and I had a talk two nights ago and I could just tell that I was holding on and wasn't going to let go. But something in that conversation was releasing. Maybe it was realizing/accepting that it is going to be overwhelming and hard but I had a choice on how to deal with it. Some of it was as simple as him saying let them cry for 30 more seconds while you rinse out the bottle I made their milk in so that it doesn't pile up later and overwhelm me. Maybe it was hearing that he was feeling some of the same but he wasn't letting it overtake him like I was. And maybe it was just a good kick in the butt telling me to suck it up. I don't know....but I started to feel better.
My focus changed back to thanking God for these precious miracles that were not even supposed to be here. Appreciating how far they have come in weight instead of begging them to gain more. Slowing down!!!!!! I don't know when the last time was that I have taken the time to just sit and watch my kids. I love talking to Alyssa and learning about her day and what she learned at preschool. She is stuck on the number 79 right now. Don't know why...but it is so cute. She asked yesterday how many degrees it was outside. She said, "Is it 79?" I said that it was probably more like 42 degrees. We drive in the car and she asked how many birds are on the electric wire. She says "Are there 79 birds?" Those are the things I need to think on. Loren loves to fall in your arms after you change her diaper and she is standing on the changing table. I love to see the trust she has for me to catch her. She has learned - I don't know where she learned it - to head butt. Yep, she started doing it with Mike the other night. She laughs and laughs. Olivia and Emma just want to be held. They just want us to hold their fingers. Actually, Emma doesn't want you to hold hers, she wants to hold yours. She'll pull away. Like she still wants to be in control. These precious gifts God gave Mike and I. These are the things I should be thinking on. It says in His word, "Whatever is good, whatever is lovely, pure, noble....think on these things.
Why would I not want God in the pilot's seat? Why would I want my human self to take control? Are you kidding me? So I'm letting go....again. I think it is something I have to continue to hand over because I am human and sometimes that takes over. But God is so faithful to stand there and say "Are you done trying?" Why don't you let me take the wheel? Matthew 11:29-30 says, "Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find REST for your souls. "For My yoke is EASY and My burden is LIGHT." I'll take that. God has a plan for me, my husband and my children and I will rest in that. I will take one day at a time, one minute at a time, and I will slow down to take in all that He has given us.
I believe we go through these hard times because God is trying to teach us something. For me, this is one of them.

Don't get too excited..

Emma is still on her nasal cannula. We just took some pictures when we switched it out. Her sats pretty much stayed at 94 for awhile before they dropped to 89. I put it on when it got there. I wanted to show you what she looked like with that stuff off. Enjoy the pictures!
There is so much I want to catch up on...but so little time. I'll do my best.
Things are going well today. The roller coaster is definitely still in effect. I'm trying to not let myself get overwhelmed...trying to suck it up...however you want to put it. Things are trying and hard but it is an adjustment that will take time and hopefully get easier. I'm so thankful for all my girls. They are so fun and sweet!!! Olivia is doing very well and growing. Emma is trying to grow. She loves to eat but has a very hard time with that reflux. I guess when they have had a tube down their throat for so long, the muscle that closes off weakens and stops shutting off. So anything sends her into a puking mess. Even a burp. We might try a different medication this week. I'm hoping that will work. We'll see. Other than that she is doing well. She is on 3/16 of a liter of oxygen and is satting between 94-100. She is very alert and holds her head up. So does Olivia. They are both smiling at us. Emma went to the eye dr. last week and her right eye has fully matured. Yea!! Her left eye is almost there. We have another appointment in 2 weeks. Hopefully we can check that off our list then.
I went to church yesterday and it was good to see everyone and hear the message. Yet it was so hard to see how much I've missed and been disconnected since last March being on bedrest and at the hospital and now being at home with the girls. Mike and I are going to take turns each service going so that will help. We start the girls RSV shots this week.
We thought Alyssa broke her nose 2 days ago. She ran behind the truck where there was a board sticking out, hit it and it knocked her on her back in the driveway. She ended up with a bump on the back of her head and a massive bloody nose. It swelled up immediately. We knew if we took her to the ER they would just put an ice pack on it since they don't do much for broken noses. I expected black and blue eyes the next morning but didn't get much. We also found where she hit it underneath her nose. Wheww!! That could have been a lot worse. So we think it might not be broken after all.
I just want to say a huge thank you to everyone who has helped us through this time. The meals, the prayers, the encouragment, the support, babysitting....it has been the biggest blessing to us!!! We thank you from the bottom of our hearts. I know we could never repay anyone what you have given to us but we hope to give to others someday to give back. We love you very much!!!!! Thank you!!!!

Got a minute

I hope as we get more into a routine, I can blog more.
Things are definitely getting better here. Emma is adjusting and that is great!!! Her reflux seems to be getting better. She spit up very little yesterday and has not had any problems with this morning's bottles. Plus she is the one demanding the bottles. I haven't looked at my calendar yet to see what appointments we are having this week. I should probably look at that. I do so much better in general when I don't have to go anywhere.
Here are a couple of funnies....
Last week I just had a very rough day of appointments....lugging all the kids to the hospital, etc. Well, Mike met me there and when I left he suggested I go to Sonic and get some food for me and the kids. I really love Sonic! So that is what I did. I got Alyssa a corn dog, Loren a grilled cheese and myself a double cheesburger. Well, I walked in the door and Emma was starving so I had to feed her. So I asked Alyssa if she would give Loren her food. So she did. I got done feeding Emma and went over to eat my food. I looked on Loren's highchair and she had devoured all of my double cheeseburger except half of one patty!!!!! Are you kidding me??? I was so looking forward to that. Not only that but she was sitting there with one of her legs out propped up on her highchair just lounging. Yep, I had a couple bites of her cold, not so good, grilled cheese sandwich. Definitely a bummer!!! But funny to others.
I have to go check on Olivia. I'll write more when I can and I'll send pictures too. Hopefully next time!

Thank God!!!

Today was a long but good day at the hospital. We had a follow-up appointment with the NICU. It was good to see these familiar faces and to be able to ask questions to doctors that know Emma. What a relief!!
Last night I was concerned that Emma had a cold. She was having some trouble breathing. But when I bulb suringed out her nose I just got a lot of blood. Her nose has been bleeding from the nasal cannula. Her oxygen place was supposed to send us a water bottle last week to help humidify the air going into her. But it is Tuesday and still no water. Well I guess her nose has gotten a lot worse. She sneezed out a small "blood clot". I don't know else to call it. There is no mucus, just hard blood. Very frustrating!!! I have been putting in nasal saline gel and it helps a little but not much. As frustrating as it is, I was still glad to know that she wasn't sick. Her lungs sounded very good. Yea!!! She also weighed a whopping 7 lb. 10 oz. Go Emma!!! They were very pleased with her. The only thing they wanted me to do was to contact my insurance and pushing the RSV shot as soon as possible. So that will be my main priority tomorrow. They said they already have 20% in the hospital right now and if she were to get it, she would have to be admitted. Her little lungs just couldn't handle it right now.
Then we had an appointment with endocrinology. Bottom line...they are fine with her levels. He said they are not high enough to worry about them. He'll see us in 3 months but he is really not concerned. If he isn't, then I'm not. I have too much other stuff to fill my plate.
I gotta go...Olivia is needing me.
Thanks for the prayers!!!

Emma

We had a head sono last week and today was the consultation with the dr. He said that she does have some fluid buildup in her head but it is such a small amount that she shouldn't need a shunt. This would drain the fluid. This is good news. We'll be getting another head sono in 2 months to check it again. Developmentally, we'll just wait and see how things are. Her eye appointment showed improvement but they'll recheck it in two weeks. We have a kidney appointment tomorrow. I'm anxious to talk with the doctor about this. We have a urology appointment coming up too. Tomorrow we'll also meet with the NICU team for a follow-up appointment. I'm anxious to ask them questions. Mostly about their expectations for her. She is gaining weight but it is slow. That is my biggest question. How much should she be gaining with having her chronic lung disease and working to breathe? I'm also nervous knowing that they are probably sizing up whether I'm doing a good job of taking care of her. Oh the pressure...
I'm taking things one minute at a time. I'm probably a little short on the sleep and patience side. If this year doesn't age me, I don't know what will.
We'll just keep on keepin on.

One ounce!

She did put on one ounce and we'll take it!! So we have her until Monday. We'll be working solely on eating. There are other minor issues that I'm dealing with too that don't help the situation. She has had a lot of drainage in one ear for a week now. We've been doing drops but it is not completely cleared up yet. Also her nose is bleeding from the oxygen and the dry air and from her cannula rubbing it. So the oxygen care is bringing us a humidifier that will go on her machine. I also rubbed k-y in her nose with a q-tip and that helped a lot. And to top it off, she had 4 shots on Tuesday. But all in all, we are doing well and we hope to keep it up.

Please gain weight...

So tomorrow we take Emma in for a weight check. She has not puked since Tuesday afternoon so I'm hoping we have some weight put on. We NEED her to have put on at least 2 ounces. Mike is going with me. I just don't want to deal with tomorrow by myself. If she has not put on enough weight, they will want to admit her and start doing tests and talk about the g-tube surgery again. We are not wanting to go that route. We just figured out why she was puking. I hope we at least get more time. It didn't help that she had 4 shots on Tuesday. Please pray for us tomorrow. I don't know that I could handle her going back in the hospital. Plus it would mean going to the PICU where I would need to be with her at all times. It's different than the NICU. Not that I want her back there either.
These pictures are amazingly similar to our children. I think the 3 pictures of Mike look like Olivia, Loren and Alyssa at their current stages of life. I think the picture of my mom and her twin look just like Emma. Go Figure!
I hope you enjoy!

Two new thoughts...

We did not admit Emma into the hospital today and I'll tell you why. While Emma has been home the past two weeks she has not done as well as I'd hoped. Obviously her weight has not increased well. Her sats have come down a little but not a lot. She has had some episodes of desats and bradies. And here lately has been vomiting, usually following some gagging. The doctor called last night and suggested we admit her because he didn't know what was wrong. So we had the choice of taking her in last night or this morning. We decided to wait until the morning.
Well last night I gave her her meds by mouth like we had done in the hospital. She desatted and paled out. It scared me but she pulled out of it. That is what started my thinking process. Why are we giving her meds by mouth when she aspirates anything that is not thickened milk? Could she be aspirating her meds? Then I started thinking about her milk and could she be aspirating that too. Well, in the hospital they have these individual bottles of formula that they give at room temperature. They don't warm them up. Well, I have been warming up her bottles. I think by doing that, I'm thinning out her milk. So the combination of those two thoughts sent me on another mission.
I stopped warming her bottles and she was able to take all 2 oz. for once and not puke it up. She also woke me up to eat before my 3 hour alarm went off. I gave her meds in her milk so that helped that. She ended up eating 10 oz. during the night and didn't puke once. Praise God! I called the doctor and told him what I had discovered and asked if we could do a weight check on Friday and if she wasn't getting better by then, then we could admit her. He said that would be fine but if she pukes once, we need to admit her. I said no problem. I really believe that God gives you gut feelings and insight to what is going on. And it's always in the right timing. Crazy!!!
So hopefully she will take off and this will work. I'll tell you what...I know this girl better than she knows herself.
I'll keep you posted.

Admitting into the PICU...

We are going to be admitting Emma into the PICU tomorrow. Yes, it rips my heart out. I feel like a failure. She did not gain any weight the first week. The second week she only gained 2 1/2 lbs. She eats but turns around and yerps it up. I don't know if her reflux is worse. I don't know if it is because of her calcium levels being high. I don't know if it is her kidneys. I don't know if she has developed a thickening in the muscle below the stomach that is not allowing food to pass through. So they feel it is best to admit her and run some tests. I'm beyond discouraged. This is the last thing we want to do but we also want her to be well. So just please keep us in your prayers.
The good news is that she had a brain scan today and her hemmorages are resolved. I also asked if they would go ahead and do her hip scan (it was supposed to be next week) and they did and her hips are fine. She got her vaccines today also.
I'm going to go now. It's probably going to be a hard night. We will be on the 1st floor of the hospital in the PICU. I'll keep updating as we go along.

I just LOVE my girls!!!!

I just REALLY love my girls!! I love their different personalities and quirks. I love who they are and getting to know them. They are each so special to me in different ways. Alyssa finds joy in so much. She is very inventive. Today she made a kite out of paper and a paper plate. My heart broke when she went outside to fly it and it wouldn't. But she still took it down to the park tonight with Mike hoping it would work down there. She likes to make tents and she will work on it for hours, perfecting it to the inth detail. Of course, she gets very upset if Loren even moves it an inch. Then she tells Loren that she is not going to be her sister anymore. She says "I'm just going to be mad right now". Today she said that she wasn't going to let Loren stay in her room ever again. (Funny since they share a room). She said Loren will have to sleep with us from now on in our room. Despite the little disputes, they love each other and tickle each other and play hours on end. I didn't think they would play so much since they are 3 1/2 years apart. But they do and I love it. I've been trying to explain to Alyssa what twins are and how her sisters are twins. She said, Yes, and Claire (her cousin) and her are twins because they have the same jacket. Again...cute!
Loren is at that stage where she is happy 99% of the time and always glad to see you. I love that!!! She wants to talk so badly and she understands so much but just isn't quite there yet. And I'm o.k. with that. : ) She is my climber and tornado. Yes, we started using the straps on the high chair. The other day I found her with windex. Yes, she squirted it in her mouth but thankfully it ran down her mouth and she didn't swallow it. At least, enough to hurt her. It covered her shirt though. Then she found a battery and started to suck on it. I got it in time. Wheww!!! She likes electric outlets. Lovely!! I would say she is her cousin Andrew's match. She is really going to do me in. She gives kisses and they are great! She makes the mooa sound.
Emma is incredibly sweet and loves to be cuddled. I love her little bald head. She is my first baby without hair and my first baby that has some rolls on her thighs. Love it! I love that she is a fighter and she lets you know when she is not happy. I'm so glad she is in our lives and has won the battle time and time again. Everything we have been through was so worth it and I'd do it again in a heartbeat. She has beaten the odds and will continue to do so.
Olivia is a sweetheart too. She is my youngest although she doesn't look it. She is more calm and mellow although today I caught her with Emma's oxygen tube in her hand pulling on it. I was like let's not start this already. She has really taken off and is becoming more and more strong every day. She likes to cuddle too and I'm thankful for that.
It is so great having everyone together. We are slowly but surely adjusting. I know it will get easier with time, at least medically. I'm just glad they are all alive and full of spirit. I treasure each moment with them and I hope they will always know how much we love them and how much gray hair they gave us. Hee hee!

Emma has a head sono and a weight check on Tuesday. Please pray that she puts on weight. She is doing well eating but I want the scale to reflect that. I'm going to ask if they could just go ahead and do her kidney and hip sono while I'm there doing the head sono. That would definitely save me some time and energy. Emma, Olivia and Loren have shots on Tuesday. That should be fun. I'm allowed to go early to try to avoid the big crowd for germs sake. We also have an appointment on Wednesday for her eyes. Please pray that they are better, even completely matured would be nice. I'm feeling stronger. I still have my ups and downs but I know we can make it through all this. We have come so far I have to hope that it will get easier.

One last comment...I went to the Miracle Walk for Small Wonders at the Riverplex. It was great to see the nurses and doctors. I didn't take the twins for germs sake but I did take Alyssa and Loren. There were a bunch of people there that brought their kids that had been in the NICU and were doing well. It is great for the nurses and doctors to see these kids grow and succeed. I met this mother of triplet girls (Loren's age). We got to talking and she pointed to Loren and said is that yours? I said yes. And she said you have twins? I said yes, they are 4 1/2 months old. She was like How do you do it? I said you are the mother of TRIPLETS, that is amazing. She said no all mine are the same age and going through the same stuff. She didn't know how I did it with Loren and the twins. So I guess I know my situation is a little crazy when a mother of triplets asks me how I do it. Seriously!! CRAZY!!!
Well, I'm staying up late tonight to get some stuff done around the house. I know that is crazy but it's the only time I'm not feeding these people and changing diapers, etc. So I'm picking up when no one is following me around undoing everything that I do.
Thank you all for walking with me through the hard times. I know it's tough and most people say they don't know what to say. And that is o.k. Sometimes that is the best thing to say to people in these situations. It's like Hey, I care enough to say that I don't know what to say but I'm here for you anyway. Most of the time I don't know what to say either. Imagine that! Hee hee!
Well, I'm seriously getting off this computer now. It's 12:45 a.m.
Love to you all!
Bethany

Attempt at pictures...

It looks like Emma is gaining a little weight. Let's all keep our fingers crossed. It is just going to be tricky with her home. Getting labs drawn and keeping on top of her high calcium levels. A lot of her levels were high...carbon dioxide, calcium, potassium, BUM, creatinum, etc. So they are trying to get her into the endocrynologist as soon as possible. I'm charting all her eating times and how much she takes. I'm also charting any alarms and any puking. She didn't puke at all today. According to the home nurse, she gained 2 oz. in 2 days so it looks like we might be on the up. I spoke with the nurse practioner in the NICU and she said it will take time for her to adjust too. I think she is doing better. I think the ear drops are helping her too to sleep and eat.
O.K. these pictures are my sad and lame attempt to get a picture of all my girls. As you can see, I need HELP!!! : ) This is why we leave it to the professionals. I just don't know if I want to expose them to the public to get these done. Bummer!
I hope you enjoy them.
So here are a couple funnies....
I found out that Loren thinks you can put toys in the toilet. I found a toy lemon and loaf of bread from Alyssa's kitchen set in the toilet. Lovely!!
Alyssa and Mom were playing restaurant the other day and Alyssa asked if mom wanted spaghetti. She said yes. Then she asked if she wanted a margaritta. Mom said "where did you hear that?" She said "From North Avenue Irregulars". This is an old movie that is almost as clean as little house on the prairie. It is one of my mom's favorite movies. Pretty funny that she learned that from mom!!!
I was talking to mom about a guy I saw on t.v. (I can't remember who it was) but Alyssa pipes up and says "You mean Rock Obama?" How cute is that? It just goes to show how much they pick up. She is so smart. She remembers a lot of big names that I'm amazed by. She has been asking if we can go to MI to go to the Pere Marquette. It's a little park we go to down by the boardwalk. She just remembers things that she might have only heard once.
Loren is cutting her 4 canines. Two are through and the other two are trying. So my nights consist of waking up, feeding one twin, then the other, then getting Loren and trying to console her. I would give anything for some sleep!!!! Things are going better at night though.
Well, I'm exhausted (imagine that) so I'm off to bed. If I can bathe my children and myself and manage to feed everyone - including myself - I've had a very successful day!!! : )

Therapy..

I think when I have the hardest time talking to God is when I know I'm going to have to give up trying to control things. I think that is how I've been feeling. Then the more I think of it, I'm like why would I not want to give up control? Hasn't He shown that He has a plan for Emma. I mean seriously, she wasn't even supposed to survive the operation. It was a surprise she lived after birth with her being so sick. So why have I been stressing and struggling over her issues now? If God could bring her through all that, I know He has a plan for her. I think one of the hardest things is to watch your child go through things they shouldn't have to. So many things that we go through with our children is probably exactly how God feels about us as His children. Whether it is our child that has made a bad decision, is on the wrong path or is in pain emotionally or physically - all this is hard but there is always something to learn from it.
I'm feeling better today. Probably because my blogging is professional therapy for free as my good friend says. Sometimes I don't know all that is inside until I start typing and then I see all the emotions and thoughts that are within all built up. Last night, I didn't sleep one minute!!!! (Thank you Olivia!!!) This morning Alyssa came in my room and I finally took a short 30 minute nap at 6:40 a.m. I will eventually fall over. I'm sure of it. Emma is doing better eating. I'm finding that if she eats a smaller amount, then I need to feed her after 2 hours. If she eats a good amount, I can wait 3 hours. But she really just has to be on a rigid schedule right now. We need to see if she is working too hard with her lungs/kidneys/etc. to see if it is affecting her weight. We'll know more next week.
I need to get my children in bed but I wanted to thank you for all the prayers and encouraging words. God has been with us so far and I know He will never leave us nor forsake us. He has plans for us, to give us a hope and a future. I'm excited for what He has in store. Love you all!
Bethany