Happy Thanksgiving

Didn't want to tease you with just a few pictures.....so here they are.




















We do have a lot to be grateful for. It has really been a challenging and rewarding year. Mostly, I'm grateful for what God has taught us this year. That He does speak to us and He does care about everything. That He wants us to lean on Him and give him control of our lives. That He loves us very much and wants the best for us. And that prayer is powerful. I'm grateful that our lives and plans were in His hands and He has walked with us every step of the way. I'm grateful for the four beautiful girls that we tuck in bed every night. I'm grateful for my amazing husband that has been so supportive and thoughtful to me. I'm thankful for our families that have stepped in and been there for us this year. I'm thankful for our church family and neighbors that have helped us through. And I'm thankful for all the doctors and nurses we have met along the way and helped our girls survive. We have a great deal to be thankful for. Sometimes it takes almost losing someone to realize how fragile life is and to appreciate the life and health we do have. As hard as it was this year, I'd do it all again to have these precious lives here with us.

I haven't updated in awhile so I'll just start throwing things at you.
Emma Grace is 8 lb. 5.6 oz. (She was 7 lb. 8 oz. two weeks ago).
Olivia Michelle is 12 lb. 7 oz. Growing like crazy!!
Both are getting over a cold (not RSV) that has been in our house for over a week now. Lovely! It started with Loren with a fever and then a cold and next the twins got a cold and then myself and Alyssa and then Mike. So we have gone through the chain. The worst parts are Emma's bloody noses. This dry weather is really taking a toll on her along with the cannula. The cold isn't helping but it should be better once we get past it.
Emma is doing well over all. The things we will be watching and working on is her calcium level and her nephrocalcinosis (calcium buildup in kidneys leading to kidney stones). Everything else seems to have resolved. We'll just keep getting weight on and hoping to get the oxygen down. That has not been better since her cold.
Good news - Olivia is off her machine!!! Yes, no cords attached. It has been wonderful!!! Just in time for Thanksgiving!! There is a picture of the machines except for Emma's oxygen. Not all the cords are plugged in but you have an idea of how many cords we deal with daily. We try the hardest to keep the kids from playing jump rope with them.
What else....oh...my results from my Cat Scan. I have had a very frustrating time finding out any information about the results. I've talked to a nurse and that is it. The dr. has been out and can't speak with me for another week or so. What I've understood from her is that I have cysts on both kidneys. He called it a tumor, she called it a cyst. Don't ask me...don't know. But anyway, on my left kidney there is a cyst measuring about 7 cm by 7 cm - about the size of a racketball. There is calcium buildup along with kidney stones. On the other kidney is a cyst measuring 1 by 1 cm. Not so big and nothing else. I'm hoping to get more information because I don't feel like I really know what is going on and I'm being told different things. If this is something that we'll have to continue to follow for years, I want more info. than what I'm getting and I won't hesitate to switch doctors. But I'll wait and see if he calls or I'll call and see if I can talk to him. It sounds like the main thing is they will have to monitor the sizes because they could get big enough that they could start affecting my other organs and then they would have to go in and remove or drain it. So if I'm looking pregnant at any point - I'm not. It's just a big cyst. Hee hee!! I'll fill you in if and when I get more information.

We had a great Thanksgiving with my parents coming first and then Mike's parents coming. We put up our tree and lights and had a great time! Just in time for this beautiful snow! We watched the Colts win!!! Yea!!! We missed everyone but it was very relaxing. I will add pictures to this post tomorrow but I'm exhausted and am headed to bed. Much love to you all!

Good night!!
Bethany

Light at the end of the tunnel....

So I definitely think we are seeing the light at the end of the tunnel. Emma is gaining weight and eating like a champ. It is so great to see the result of the nutrition. She is really filling out. Her hair is growing. Her nails are growing. She is smiling and feeling much better. Her level of dehydration in one week went from 46 to 30. She is down in oxygen. If she does well this week, we will be ready to wean her off of oxygen starting Friday. We'll have to see how she is doing at that point. We have her weight check on Wednesday. I'm definitely anxious to see that reading. The girls will have their second synagis shot on Friday. These shots are $4,000 a month - all to prevent them from getting a cold. They will have 3 more shots after this - 5 total for the season. Technically, the season will last about 2 more months but insurance will not help out with that.
I'm taking the girls to the hospital today to get their monitors downloaded at the sleep lab. Hopefully, we will get Olivia off of hers. That would just be wonderful!!!!!! To be able to carry around a child without a machine. Definitely nice!! For Christmas, I would love to have both my daughters off machines and oxygen. Wouldn't that be a nice Christmas present? It could happen.
I'm loving watching our kids grow and learn. Fun and challenging all in one.
I'm going to get going because I have a house to clean, children to feed and diapers to change. Can you believe I have 3 in diapers? It hit me yesterday that I gave birth to 3 children in 13 months. My friend had a 10 lb. baby boy in September. Amazing!!! My biggest was 7lb. 6.8 oz. My others were 4 lb. 11 oz., 2lb. 9.4 oz., and 1 lb. 6 oz. Go Girl!!!

Love you all tons!!
Bethany

Good News!!!

The good news is that Emma's lab results came back and everything has normalized except the calcium which could take awhile. This is great news!!!
I did a little research last night on lasix and the side effects were right on with Emma. Her "reflux" wasn't reflux. It was nausea and vomiting (side effects). Dehydration, losing electrolites, renal complications (kidneys), etc. So we definitely hit the spot. I'm just soooooo thankful we didn't go ahead with the g-tube and still have all these problems. And then find out this is the problem when we had put her through the surgery and back on the vent. etc. So Praise God!!!

8 pounds!!!!

So Miss Emma....in one week.....has gained 8 oz. This is wonderful!!! We are down to one lasix a day and improving by the millions. I'm now seeing things that I now know were signs of dehydration and/or lack of nutrition. For example, her nails are now starting to grow. Before they were splitting down the middle and falling off. Her dry cough (it sounds like a dry heave which leads her into puking) is gone. She no longer pukes and I've even stopped her zantac. She is night and day different. Thank the Lord again for showing us and leading us to another answer. Friday we will be done with the Lasix. We then go a week and make sure there are not any changes. Then we start her off oxygen as long as things are still good. They emphasize only making one change a week. So we'll see. Next week we will have a weight check along with the girls 6 month checkup. Which means shots are coming up too. I need to look at the calendar for that. We did a bunch of lab work today and probably won't get the lab results until tomorrow. We are starting to see the light at the end of the tunnel. This will be a great Thanksgiving!!!!
Thanks for all the prayers!!! They have definitely been needed and heard!!!
Love to you all!
Bethany

Colts Rule!!!

Wow!!! So I have some catching up to do. First of all, Mike and I took a last minute trip to IN. I haven't been out since last April and that was for surgery in Cincinnati. Before that, it has been since probably January. It felt great to get out of the state for a little bit!!! Yes we took all four girls. The trip there was crazy. Loren was the least happy. But we made it. We had a very relaxing Saturday. Sunday Mike and I went to the Colts game in their new stadium. AWESOME!!!!!!!!!!!!
Thanks Stac and Mark!!!!! We love you!!!
It was again great to get out by ourselves for the second time and just enjoy each other. Awesome game!!!!

Both sets of grandparents split the girls up and watched them for us. Thank you!!!

Emma is doing really well. We have weaned her down to once a day on her Lasix and she is doing great!!! Her oxygen has come down and she is now consistently at 3/16. I just brought her down further to 1/8 because she is satting 99/100. So we'll see what this week brings. We have a weight check on Wednesday along with blood work this week. I know she is doing better. There have been so many changes.

Her soft spot is not sunken in. She is much more alert and happy. She is not sleeping all the time. She is not puking. She is hungry and is eating great!!! I'm truly amazed!! I'm excited for the doctors to see her again. If she keeps this up and is gaining weight then I'm going to cancel her GI appointment. We'll just hope and pray and see.

On the up....

Well, Emma has taken off. She is doing very well. She has not been puking at all. Her appetite has increased tons and she is more alert and you can just tell she is feeling better. Her in-home nurse stopped by real quick today to drop off a swing and I told her what had happened. She decided she wanted to weigh her. I was a little nervous to see. She had weighed her two weeks ago and she was 7 lb. 6 oz. on her scale. Today she was 7 lb 11.6 oz. That is HUGE!!!! That means that she has gained 5 oz. in two weeks. It's also big because her scale always weighs Emma the smallest between the 3 scales she uses. There is the NICU scale (where she always weighs the most - this is part because they leave all the belts and wires on). Then you have the pediatrician scale - this is the middle scale. Then the nurse's scale (weighing at our house) is always the least. For example, I would have an appointment at the peds. and she would weigh 7 lb. 3 oz. and the next day we would weigh her at home on the nurse's scale and she would be 7 lb. 1 oz. So the fact that in the NICU on Tuesday she weighed 7 lb. 8 oz. (with her belt and wires on) and then 7 lb. 11.6 oz. with everything off. Huge!!! As you can tell I'm a little excited!! I just really see a difference in her. I'm journaling everything - how much she eats, pukes, the times, everything. So now we just have to keep an eye on her oxygen and make sure that she doesn't need to go on diurel, which she might. We'll see...
Well, I'm off to bed. Later!!!

A what a big puzzle!!!

This little Emma has been such an amazingly complex puzzle!!!! Such complexity in such a small person. As much as I love finding problems and then solutions, I think I've had my fill for life.
So here goes...
Yesterday was her cookie swallow. To sum it up, she is stronger. She is not aspirating nectar (obviously) that is what she is on now (with the thickened milk with rice cereal 1:1). So they tried her with a honey consistency (this could lessen her down to a thickened milk of a 1:2 ratio). She did not aspirate that. However, she did penetrate it pretty deeply - almost to her vocal chords. She did aspirate straight milk. What this all means is that we could lessen the thickness of her milk but we do risk her aspirating. On a personal note - now that I've found a formula that doesn't make her puke, I'm not ready to change anything. But we knew we needed to talk to the doctors today to discuss her plans.
So today was her NICU follow-up. Mike and I were both in shock when they put her on the scale and she had lost an ounce (in 4 weeks!!!!). She has barely puked up anything in a week!!!! How is this happening!!!
Well, the doctor came in and we started out talking about a g-tube. He said we can start out with doing some medical therapy with the GI doctor and see if we can get the reflux under control. Then the next step would be a G-tube. But then we were talking about how much she is drinking and how she has barely thrown anything up in a week. So that got our wheels turning. Maybe we are looking at the wrong thing. What really made his wheels turn was when he listened to her lungs. He said they are clear. I said I know. He said have they always been clear. I said yes. So everything shifted at that point. If there is no fluid on her lungs, and she is on such a harsh diuretic, then what are we getting rid of??? She is basically becoming dehydrated. She is getting rid of all her fluid in her body. So this goes back to make sense of other problems.
Lasix is increasing the calcium in her.
Lasix is depleting the electrolytes in her.
Lasix is probably why she is not gaining any weight.
The dehydration is not helping her calcium buildup in her kidneys.
So the plan is now....that we will still see a GI specialist to rule out the reflux problem and just see what is going on. But most importantly, the game plan is to get her off her lasix!!! We have started the weaning process but it will take a couple of weeks. If I see that she needs more oxygen, I'm to call the doctor and we will probably start her on some diarel (a different diuretic). We will repeat the blood work next week and see if it has made a difference. If it has, I'm sure we will then do another sono of her kidneys (we haven't done one in a month and a half). I'm praying this is the problem. We really need to get this under control. We have a month to do that. We don't want to go any later because we don't want to hurt/affect her growth for the future, especially her brain development.
Please keep us in your prayers that we, the doctors and us, will figure this puzzle out. The last thing we want to do is hurt her and if a g-tube is the way to go, sign us up. But if this is the solution, then that would be awesome!!
I know this is complex. After Alyssa I felt like I earned my nursing degree. After Emma, I think I earned my white coat. : )

By the way, the weights are...
Olivia....11 lb. 8 oz.
Emma....7 lb. 8 oz.

4 pounds different. Crazy!!
The girls will be 6 months old on the 22nd of this month. They are beautiful and so sweet!!!

Last Saturday we had two amazing ladies come and watch all our children for us. As a bonus, they were nurses. It allowed Mike and I to get out of the house together and have the whole day. It was so incredible. We saw a movie and got almost all our Christmas shopping done. We just walked and talked and ate. The food was warm and we didn't have to share. We just really enjoyed the day. It was much needed and our girls had a great time!!! What a treat!!!! Thank you!!!

Tomorrow I go in for blood work. I am having a CAT SCAN done on the tumor on my left kidney on Friday. They want to see if it has gotten any worse or ruptured or if it is bleeding. This will also tell them exactly what this tumor is. I'm not worried about anything but I will keep you informed of what I find out. I would like to know how big "massive" is though. Just how many pounds could I loose if we got ride of that? Hee hee.

Well, have a great night! I'll keep updating when I can find a minute to breathe. :)
Love,
Bethany

p.s. I'll try to post pictures next time.

Quick update...

Emma had her eye exam on Thursday. Both eyes are mature finally!!!! Yea!!! One more thing off the check list.
Her urine test came back showing bacteria. They said this is normal with babies wearing diapers but they are going to play on the safe side and treat her with amoxicillin for 7 days.
She has not spit up in 4 days now. Yea!!! This formula is working and we are back to Zantac. Some of you have mentioned if we have thought about getting a nissen. We met with the GI dr. awhile back and discussed the g-tube and the nissen. At this point, as long as the doctors are fine with her progress, we do not want to do the nissen. To solve the reflux for a short time with a long-term result of never being able to vomit or burp...we're just not ready for that. She is still growing and coming down in oxygen. We do know it is an option if it comes to that. Thanks for the info.
Emma is currently down to 1/8th of a liter. We have 1/16th, then 1/32nd and then we are off. We are not pushing her because we do want her to grow and not struggle to breathe. But when she is satting high, we lower it. We are just letting her lead the way.
We are repeating the cookie swallow to see if she is still aspirating liquid. Part of me doesn't want to do this because what we are doing works finally - eating wise. However, her kidneys need more water/liquid if we can so we'll see what the outcome is.
The endocrinologist called 2 days ago and was fine with all of her results. He said the sodium and magnesium and a couple other things are high but he is pretty sure it was because she is on the powder formula. I told him that I just switched it back to liquid the day before. We are going to give her some time and then repeat the blood work. He seems very comfortable with her. Also, the ionized calcium that was high in the hospital is normal now. That is great!! And her thyroid is normal. So we are looking better for sure in this area.
Now we focus on her kidneys and see what we can do here. Her cookie swallow is Monday and her NICU follow-up appointment is Tuesday. She is starting to pick up her weight so that is great!!!
Well, I'm hitting the sack. Definitely tired!!!
Love to all!!!
Bethany

Prevacid

It's me...again.
So I don't think the prevacid is working any better.
She took her last pill of that today. So I'm planning on going back to Zantac tomorrow. She is back on Enfacare and they are the "ready to use" kind, not the powder and she seems to be holding things down better. I really think the consistency is different. We bought a case, which is $89 and it lasts about 6 days. Holy cow expensive!! At this rate, we will definitely be standing on the corner with a mug for change. J/K. We will need to continue this for at least 7 more months. I wonder if this could be considered flex spending next year???
Anyhow...for a "term" baby, reflux usually peaks at 4 months and then gets better. Technically, her adjusted age is 3 months. So I guess that means it could get worse this next month and then start to get better. I personally don't think it could get worse. :)
We are doing pretty good here. I have an angel of a neighbor who is going to watch my girls tomorrow so that I can go work out. I've just learned that I need to give myself breaks. Easier said than done - I will say that. I'm getting more sleep at night, it's just not good sleep for the time being. Hopefully that will get better. I still don't know how to get time to myself in the morning or night without burning the candle at both ends. My girls are usually up at 5:00 a.m. and go to bed at night around 10:00 p.m. So it is not like I can get up any earlier or stay up later to get stuff done. It is definitely challenging to figure out what works.
Today I was explaining to Alyssa that I was going to vote and how that works. She said, "Mom, I voted today at preschool". "I voted for the color pink. And then I voted for shapes". "I chose a heart". She said green won but she was sad because she wanted pink to win. She said she wanted to choose pink, blue and purple but her teacher said you can only choose one. She said there were 3 sticks in the green. I thought that was pretty cute. Loren fell asleep in her swing out back. Emma and Olivia are smiling more and cooing. It is very sweet!!
We have decided to not go anywhere for Thanksgiving and Christmas. As hard as it is, we know we have to protect Emma and Olivia from all germs. We just can't take that chance. We have to live with the outcome and the risk is too great. They have compared their lungs to the immune system of AIDS patients. Their lungs are lacking that immunity and won't be able to fight it off if they were to get sick. They have advised to stay indoors as much as possible. It will definitely be different for the holidays but still good.
I must get to bed. Love to you all!!
Bethany

Urologist

We had a long visit at the hospital today. We went for Emma's Urology appointment. While we were there, we also downloaded Olivia's monitor. She is doing well and I think we will be able to get her off of the caffeine and see how she does. If they decide to take her off, then she will need to go 2 weeks without any alarms for them to take the monitor away. That alone would be awesome!!! These wires are making us crazy!!!! It makes it hard for me to walk around the house at all with either baby. Slings and carriers just don't work at this point. If we could get rid of Olivia's monitor, I could walk around with her when she needs calming. Plus, it would eliminate us getting the girls tangled up together. I find out that plan on Thursday.
Back to Emma....She had to have a catheter for a urine sample. Hate that!!! She wanted to send me home with a Foley cath. and do a 24 urine sample but then she decided that they could just see how these test results come back before having me do that. They did blood work. She got stuck 3 times to try to get enough blood - one in each arm and one in the hand. I hate watching them poke and then move it around to try to get more out. Torture to watch!!! Poor little Emma. :(

So talking to the doctor about Emma. She has Nephrocalcinosis. No clue if I spelled that correctly. This is the buildup of calcium in her kidneys that will lead to kidney stones if not treated. So our treatment...first off, she wants to switch her to diarel and take her off of lasix. I told her that they wanted her on the lasix to decrease the calcium levels. She said the lasix actually increases the calcium. Go figure!! So hopefully we'll get that switched. The other thing is she wants to increase her water input. I told her about the cookie swallow and that she can only have things that are thickened. So she is going to talk to the doctor. We might repeat the cookie swallow and see if her muscle has strengthened at all. So we'll see what happens. She is supposed to call me tonight and let me know the plan.

While we were in there, she asked if there is any family history of kidney stones. I told her about my kidney tumor. I told her all I knew was that he said I didn't have cancer and that they would watch it. She gave me some literature on what I have. It is called angiomyolipoma. It is a benign, non-cancerous kidney tumor containing smooth muscle. Often treated by nephrectomy. She said there is a very small chance that it would turn into cancer but it is possible. But still a very small chance. She said the bigger complication is just that it is a big tumor and it will be an annoyance. She said that it could rupture and have excessive bleeding. She said any trauma or high blood pressure could make that happen. I called today to see when my cat scan is scheduled. It will be either this month or next. I did learn more today about my situation than I did with my doctor. Too bad she is a pediatric doctor or I would switch. : )

So Emma and Olivia are both sleeping after a long day. We have two more appointments this week. Thursday morning is Emma's eye exam. Please pray that her left eye is mature. It would be so nice to not go back for 6 months. We also have a pediatrician appointment to see how Emma is doing and she if she needs any changes made.
Much love to you all!
Bethany