Update...

Wow! I guess I need to catch up. Who to start with first....
Alyssa - had an x-ray, EKG and Echo cardiogram on Wednesday at the hospital. She kept saying "I don't want to have surgery". I kept telling her we weren't. We had a good report. Her heart is about the same - not much worse. He said she will have an open heart surgery where they will replace her pulmonary valve with a human donor valve but he wants to wait as long as possible since that donor valve only has a set life span and then we will need to replace it again. It was good to hear that news. I kept thinking if they tell me she needs to have surgery now, I think I'm going to lose it. But we don't so we are good.
Olivia - I'm trying to remember what I wrote prior to this. We went to the Dr., had an x-ray and blood work. The x-ray showed a lot of gas. Olivia was put on Zantac and what a blessing! She slept the whole night bedsides her feedings. She has stopped spitting up. Thank God for Zantac!!!!! What a great night!!
Emma - Big day!!!! She came off of the c-pap today and was put on a nasal cannula!!!! Wow!!!! She also came off of gown, glove and mask!!! Mike and I got to hold her for the first time without all that stuff on. It was great!!! So far she is doing amazingly on it. They will let her adjust and slowly wean her down. She is on 4 liters right now. Go Emma!!!
Loren - nothing medically (Thank Goodness). She is our climber. Walked in to the kitchen today and she is on the kitchen table. She loves to kiss Olivia. She loves to dance - looks like she has an invisible hula hoop on. Oh..and she likes to yell Hi to everyone.
Enjoy the pictures!
Also...Emma has almost tripled her birth weight. I think she is 2 ounces away.

Frustrated...

Last night was very frustrating. Olivia has been up a lot at nights but last night was horrible. She was up from 8 p.m. to 3 a.m. straight and you could tell she was uncomfortable. By 3 a.m. with no sleep, I was very much wanting to know what was wrong. From 3 a.m. on, Mike's mom took over. Olivia has always spit up some but in the past couple days it has gotten really bad. She is very gasey too. On Saturday, the day she was discharged, they had started her on polyvisol with iron. That has the tendency to constipate. So we went about 3 days without a good stool. There was some stools but not ones that were good enough for me to feel good about. This morning she had her first good stool followed by several more. Considering her history (NEC and an Illius), I was a little nervous/cautious about her spitting up and being gasey and not stooling well. So we went to the the Doctor today. Even if it was just getting a peace of mind, it was worth it. If it was something, I caught it early. If not, no harm done.
Her Dr. wanted to be extra cautious with it, so Olivia had an x-ray (which was done in the office) and some lab work. The x-ray came back showing that she had a lot of gas but no dialated loops or anything to re-admit her. So that is good news. She started her on zantac to see if that helps with all the spitting up. We've narrowed it down to either reflux or the formula I'm putting in her breastmilk. I nursed her at 4:00 p.m. and didn't have any spit up afterwards. The difference there is that I didn't offer her a bottle afterwards. Usually I do and it has formula mixed in with it. The next feeding had zantac with it and she didn't spit up either. So we'll see how tonight goes. I spoke with Emmma's nurse tonight and she recommended that I hold her upright for a half an hour after I feed her to help with the relux too. She said that reflux tends to get worse and spikes at 4 months then starts to decline. That is good news. The good news is that she is 5 lb. 1 oz. She is doing really well! She is very sweet and loves to be home!
Emma Grace is kicking tail. She is 4 lb. 1 oz. Wow!!! That is my girl! She is tolerating the decrease in oxygen also. She is now on a c-pap and doing great! I just called and she is at 44% oxygen. We'll see if they make a change tomorrow.
I'm going to be selfish by asking that you pray that I will get some sleep. :)
Having a new born is tiring but this is different. I know something is just not right with Olivia and please pray that we can pinpoint the exact culperate.
Thanks and good night!!!!

Update...

I'm going to make this short because I know it is going to be another long night. : )
Olivia is still doing well. She sleeps great during the day and is up all night. Lovely!
Emma is doing really well. She was at 41% oxygen on the cypap today when I went in. Then they took her rate away this afternoon which put her on the c-pap and so far she has tolerated it very well hanging in there at 44%. He told me that he would like to get her to a high flow nasal cannula by the end of this week. That would be great!!! We'll just keep cheering her on.
Alyssa is going in tomorrow for her yearly checkup with her cardiologist. She will have an x-ray and echocardiogram. She has a regurgitating pulmonary valve that we continue to monitor so we can see when she will need to have it replaced (another open heart surgery). Last year, on a scale of 0-4 (4 being the worst) hers is a 2-3. So we'll see what the last year has done. I hope she will not be scared for these tests.
Olivia had an eye exam this afternoon and her eyes are still immature (they are still developing). She did not see anything wrong but they will need to see us again in a couple of weeks to see if they have fully developed and watch for retinapathy of prematurity.
I think that is all for now. Enjoy your sleep tonight! I'm jealous already.

So let's get a better post out there...

I think my post yesterday was pretty wimpy and showed my lack of sleep so I'm going to make up for it by putting a lot of pictures on here. Enjoy!
Olivia is doing well at home. She has had two bradys (both went off while she was eating followed by a huge burp - and she self corrected). All the other alarms were just telling us that a lead was off. She loves being snuggled. Alyssa is all about being motherly to her. She wants to hold her, rock her, carry her...yes...we did draw the line somewhere. She is a great big sister. Loren has started giving Olivia kisses. It is very sweet! Alyssa loves to put her hand sanitizer on. I have to keep Olivia out of reach from Loren - if I didn't, she would end up back in the hospital. : )
We had a pediatrician appointment today and Olivia weighs 5 lbs. Big girl! They said that I'm allowed to nurse her twice a day now. They will continue to do weight checks and as she grows they will continue to increase the amount of times I can nurse. The doctor was very pleased with her. They were very good to send me straight back to a room instead of waiting in the waiting room with all the germs. : ) That made me feel better. We have to watch her weight. If there is too much of a weight gain, they might have to put her on a diuretic for her chronic lung disease. Right now she is right on target and does not need that. Yea!
It is great to have her home and now I'm ready for Emma!!!
Emma is doing well. I was able to make it to rounds this morning. They are going to try to slowly get her off of oxygen again. They took her rate from 20 down to 10 and she seems to be tolerating it. She is currently at 50% oxygen. He hopes to wean her down so by the end of the week she will be on the nasal cannula with a high flow. I hope it works but I'm just sitting back and watching, encouraging her along the way. I'm so proud of how far she has come. I think Olivia and Emma are looking more and more alike every day. I can't wait to get them together! Hopefully sooner than later.
Have a great night!!!
I'm going to get ready for my long night.
Thanks for the prayers - keep praying for the health of both our girls and that they will be together soon.
Love,
Bethany
P.S. Emma's day home will have a ton of pictures of her too!!!! : )

One down..one to go...

Yes, just as I'm sure you are waiting to see the next episode of "Days of Our Lives", you are waiting to hear the verdict of Olivia coming home. Olivia did come home last night around 6:30 p.m. I got a phone call around noon saying that she was ready. We were very excited but had to rush around a little since we had little notice. She is doing well. I'm on the tired end of things since I just got reintiated to the sleepless nights hall of fame. I'm running on about 2 hours sleep. She has been sleeping really well during the day...the nights - forget it! Oh well...I'm so glad she is home. We had a nurse stop by today and check her weight and vitals. She is doing well. She weighs 4 lb. 14.1 oz. (She came home at 4lb. 13 oz.) So we have one down and one to go.
Miss Emma is doing pretty good. She is still on the nasal cannula ventilator (like cypap). We went in to see her last night. She was at 60% oxygen. She immediately starting satting high so they had to keep turning her down in oxygen. By the time we left, she was at 40%. It was really cool! Like us being there really helped her. I hope she makes some progress this week. I can wait to have her home too. It is hard leaving one there. I'm glad Olivia is home but I want Emma home too. Hopefully soon.
Well, I'm going to go tend to my baby. : )
Love to you all!
Bethany

Keep on keepin on....

I know it has been 2 whole days. I'm sorry.

I feel like a lot has happened. I'm just going to fill you in. I don't know what I've told you and what I haven't and to be frank...I'm too tired to go back and read what I already wrote. Two days ago both girls were doing well. Olivia was on the road to coming home this weekend. Emma was doing well with her c-pap settings. Last night we went in and I guess Emma rebounded. She went from 30-40's on the oxygen to 100%. So they started trying other things and they basically did everything but reintibate her. She has in the nasal cannula on the ventilator. So she is basically on the ventilator but she just doesn't have the tube down her. That really is a good thing. I'll take anything as long as she doesn't have that tube down her. Since they switched her, she has been in the 50's and 60's for oxygen. She had a good day as far as staying stable and not getting worse. We are being very careful to not wake her and make her worse.

Olivia is ready to come home but is not passing her car seat test so I don't know when she is coming home. They said she has a 50/50 chance of coming home tomorrow. Whatever that means. She has been taking all of her feeds and I was able to nurse her today for one feeding and she did great. I spent the whole day with her. She got her pictures taken. She got a bath. I gave her her medicines. I fed her at every feeding. The day went well. It's just very draining and I'm feeling like I'm at the end of my rope again. I guess this is just how the phase goes. You would think I would be used to it.

It didn't help that yesterday a light went on in our van indicating something was wrong. This afternoon it went off. So is there something wrong? Mike and Tom are going to check it out this weekend. Then tonight when I was pumping - my pump broke. The milk starting flowing down the tube and into the machine. That can't be good. That is the LAST thing I need. I might be at the NICU all day tomorrow just to use their machine. Aughh!! Mike is trying to fix it...we'll see if it works.

I almost think I need another week with Olivia there so I can rest up again - mentally!

Please keep praying for Emma's lungs. Please keep praying for Olivia's digestive system...that it keeps working without infections. And please keep praying for our endurance to keep on with this journey. I know this is another point where God will pick us up and carry us through. I'm going to call it a night and go see if my pump is fixed. Oh yea, please pray for my pump. Just kidding. : ) Have a great night!

Love you all!
Bethany

Nesting...

Yes, I'm nesting. I scrubbed the bathroom that we painted last weekend. I cleaned the laundry room. I've gotten caught up with the laundry and have it all put away. I've dusted our bedroom. And I still have a list a mile long. If all goes well, Olivia will come home Saturday or Sunday. I plan on rooming in Friday night. I'm very anxious. I want to be all caught up so that when she comes home we can just sit and hold her and relax. We'll see how much I can get done in the next two days. : )
Olivia is eating all her feeds by bottle. She is up to 24 ml. (Remember she needs to get to 40 ml.) She is doing so well! I'm so proud of her. I'm ready for my girls to come home!!
Emma is doing awesome too!! She is doing so well on the c-pap that they are talking about switching her to the nasal cannula this weekend. Wow!!!! After that, they will get her down enough so that she can take a bottle and she'll be out that door before we know it. Incredible!!!! It has been a very long two months and I can see the light at the end of the tunnel. My life will be caotic here real quick and I don't care!! : )

Cypap to C-pap...

Emma and Olivia are two months old today. They have come so far and are growing stronger every day. I want them home so bad!!!! I'm ready to hold them in the comfort of our own home, to let them meet their sisters and snuggle with us til the wee hours of the morning. It's definitely getting closer.
Emma came off of the cypap today and went to the c-pap. Basically, that just means they took away her rate (breaths per minute). She just has a continuous pressure. She is doing really well with that. We'll see what tomorrow holds. I don't know how far they are going to push her. She's amazing. Emma Grace weighs 3 lb. 9 oz. (It's amazing to think that she weighed 1 lb 6 oz. at birth). Not to mention the weight she lost after birth. She is growing more hair and still loves to eat!
Olivia is doing well and eating also. She weighs 4 lb. 10 oz. She is taking all eight bottles. She is at 20 ml. a feeding. By Friday she will be at full feeds which is 40 ml. The discharge nurse came and spoke with me today about plans. It sounds like we are getting close. I will probably room in with her Friday night. She needs to pass the car seat test and Mike and I need to watch videos. Then she should be good to come home. If things go according to plan with no more bumps in the road, she should have her home by Saturday or Sunday. We'll see. We will be having in-home nursing. Basically, that just means that a nurse will stop by 2 or 3 times a week and check on the girls. She will weigh them and check their heart and lungs, etc. I know this will give me a piece of mind. Plus, I won't have to keep taking them in to the Doctor and exposing them to all those germs.
Here are some pictures of the girls!! (Olivia does have an i.v. in her head).
Enjoy!!

What a great day!!!

Here is Grandma with Olivia and the other two are precious pictures of Emma off of the ventilator.

Maybe it is just my imagination...but I'm starting to feel like when we hold Emma that she does better. Yesterday I held her and it was wonderful!!! She was between 55-70% oxygen at a rate of 20 breaths per minute. And today she is better. This morning I went in and she was at 37% oxygen and doing well. They decided to lower her rate from 20 to 10 and she is still doing well in the 30's. I'm so thrilled!! We'll see where this goes. They are taking their cues from her. Go Emma Grace!!!
Miss Olivia is doing well also. They did another x-ray this morning and she looks good so they restarted her feeds. They are not going to gut prime. They are starting her feeding schedule. I fed her 8 ml. at noon and the nurse fed her two more bottles since. Yea!!! Go Olivia Michelle!!!
Mike and I painted another bathroom. Each day I'm feeling more and more prepared to bring home these little bundles. I look forward to the day that I can dress them myself and just sit and snuggle them in the comfort of my own home. At the rate Emma is going, they just might be home at the same time. : ) Who knows?

I got to hold Emma today...

I got to hold Emma today for a brief moment. I loved every minute of it! Then she pulled out her feeding tube which cut our holding time short. She is just so sweet and doing so well. She is still on the cypap and at 55% oxygen. She had a very good day today. We'll see what tomorrow holds.
Miss O. is doing better. They have stopped her feeds until her belly heals. They are letting it "rest". She is coming back negative for infection. She does have dilated loops in her bowels and a lot of gas so they will wait for those to resolve. They have her scheduled for another x-ray in the morning. They did start her on TPN so she is getting all her nutrients through her i.v. If this will make her better, I'm all for it. I've seen her more awake in that last day than the whole last week put together. I think she is looking better.
Emma and Olivia have some of the best nurses taking care of her - ones that we really love! I appreciate all that they do and how they care for the girls and know them like we know them. That means the world to us!!! Thank you Julie, Lisa, Linda and Mickey!
Mike's mom is here this week and that will be a lot of help for me to get into the NICU to be with my girls. I need to get some good holding time in. Again, we'll see what tomorrow holds.

When one goes up, one goes down...

Around 2:40 p.m. today, Miss Emma was taken off of the ventilator. Yea!! She is on cypap. It is like the c-pap but it has a rate with it. That means it gives her so many breathes a minute. She is doing well so far. She is at 55% oxygen with a rate of 6. She does not like that thing in her nose. When she cries now you can hear her. She is very hoarse though from having the tube in her throat for so long. She likes having her bottom patted. She still has the gown, mask and glove on and they said she probably will have that until she is released. That kind of stinks but what do you do. We will know more in the next week as to whether she stays off of the ventilator. We need to keep praying for those little lungs.
Olivia was taken off of feeds today. There is a small amount of blood in her stools. She has been puking for about a week now. It seems to have started when they ran out of my breast milk and put her on formula. She was on formula for a day and a half and then she was back to my milk. It seems like she has an illius - her intestines might be irritated and inflamed. They did an x-ray and it showed a lot of gas. They did some blood work and so far it shows no infection. They stopped her feeds and started an i.v. with sugar water for now. They will do another x-ray and blood work in the morning. Based on that, they will either restart her feeds or keep her off and start TPN. Please pray that it is nothing and that her body will rest overnight and heal so she can start eating again.
Just another dip in the roller coaster. This time we have two roller coasters going and one is going up and the other is going down.
Thanks for the prayers!!!!

Big Day...

Tomorrow might be the big day. Emma has gone down on her oxygen from 67% to 45%. She has come down on her rate from 42 to 35 and is now down to 30. Her pressure is down to 26. Her blood gas at 2:00 p.m. was awesome! They are trying to get her numbers to 22 and 20. If they are down to that by tomorrow morning (that is their goal), they will attempt to extibate her (take her off of the ventilator and put her onto the c-pap). She is doing very well and we hope that she continues. I'm thinking positive but I also know the reality which is keeping my feet on the ground. Please be praying for her during the next 24 hours that she will come off and stay off. I kept hearing a sound coming from her like she was snoring. The nurse said she had a leak. To me it sounded like a bad thing but then she explained that the swelling in her throat has gone down so now air is leaking out. That is a good thing. She is off of lasix now. We are definitely on a roll and I want that ball to keep rolling. Go Emma! We are in your bleachers cheering you on!!!
Olivia is up to 6 bottles a day now. She needs to take 100% of all 6 bottles for her to increase to 8 bottles. I fed her today at 2:30 p.m. and she took 28 ml. So she had 10 ml. left. There are two feelings/emotions that go with this. #1 - I know that the nurse could have fed her all of it. So with me doing it, it probably held her back. #2 - I have to get comfortable feeding her and I have to learn sometime. So it was probably really good for me to get in there and start feeding her myself and work with her on it. I'm going to be much more confident bringing her home if I'm more comfortable with it. So it was probably worth her not taking all of her bottle. She still likes to sleep a lot! Must be like her mom. :)
We'll see what tomorrow holds.
Until then,
Bethany

Keep it up girls!!!

Quick update...
Emma had a good night. She is in 66-70% oxygen. Her rate is at 48. Her blood gases this morning were good. So we will see what they decide on rounds. They will probably do some more lowering of her rates and pressures so we'll just keep praying that she will continue on this path.
Olivia had a good night also. She was allowed 3 bottles and one tube on nights and she took all three bottles. She will be allowed 3 bottles on days so we'll see how she takes those.
Keep it up girls!!!

Daddy's turn...

Daddy got to hold Emma today for the 1st time. She is 8 weeks old today. He loved every minute of it. She did not require any extra oxygen while he was holding her. Yea!
So after Emma's great blood gas this morning, they went down on the rate (on the conventional ventilator)from 60 to 55. They did a blood gas after that and an x-ray. The blood gas was good. The x-ray looked the same with one side very hazy. So they rotated her with her other side up. Within minutes she went down on oxygen from 98% to 80%. They went down on her rate again from 55 to 50 and then to 48. We went in at 4:00 p.m. and her oxygen was down to 66%. Her blood gas at 6:00 p.m. was good so they are going down on her rate at 3:00 a.m. from 48 to 42. They will do a blood gas at 6:00 a.m. and see how she tolerated the rate drop. We are holding our breath and praying that she continues. They said they are going to keep pushing her as long as she is tolerating it. She seems better and is loving to be touched now. We'll see what tomorrow holds. Please pray for no infection. That is the last thing she needs right now during this process.
Miss O. is doing well. She has taken her bottles well today. 38 ml. is her full feeds. She took a 38, then 38, then 28 (because she ran out of time - they only allow 20 minutes for feeding so they don't start burning calories), then 38. So we are on a roll. If she keeps this up I could be rooming in with her very soon. Again we wait and watch.
Thanks again for all the love and support!!! We appreciate your prayers and encouragement - it really is what the foundation of our daily walk and this whole journey is made of. Thank you for your comments in response to the blogs. I love reading them!!!!
I can't wait til the day when I get to put our twins side by side and take a picture of them together. Someday I'll post that picture on this blog spot!! : ) Won't that be a happy day!!
Love,
Bethany

Requiring more oxygen but doing better...

During the night, Emma was requiring more oxygen. She had been in the 80's and last night was in the 90's. But they decided they would leave her be as long as she wasn't at 100 and staying there. Remember she is off the jet so they had to go up on her oxygen. Well, this morning her blood gas was really good. So I don't understand and neither does the nurse. She said sometimes it doesn't make sense. She said you can have a baby that does so good during the night and then the blood gas comes back horrible. So I don't know what they will decide on rounds. They might decide to leave her be or come down on the machine. Please keep praying that this will work. We really need to get her off of the ventilator for her sake.

Olivia did well last night and took all of her bottles she was allowed to have. So today they should to up to 6 bottles a day. We'll just have to wait and see if she takes charge.

Here are some more pictures...

Here are two more pictures of me holding Emma. Mike will be able to hold her for the 1st time tomorrow. yea!! By the way, she weighs 3 lb. 12 oz.
Loren loves her cell phone!! Yes, we are in trouble!!!
Alyssa fell asleep on the way to Michigan. No I swear I did not drug her. : )

Emma in my arms....

Yes, I finally got to hold Miss Emma Grace today. She did really well and I loved every minute of it despite the mask, glove and gown. She is so beautiful!!! Believe it or not, 3 lbs. can start to feel like 20 lbs. after awhile.
Emma was taken off of the jet today and is holding steady. She is still on the ventilator. They will check a blood gas in the morning to see how she is doing. Hopefully she will be off that in a few days. We need to keep praying for her little lungs.
Olivia took her last feed by bottle - all 38 ml. of it. Good girl!! I hope that she will keep it up. She did spit up all over dad tonight. It was funny (I'm sure daddy didn't think so). Hee Hee!! : )
I think that is all for today. We'll just keep waiting and watching and praying.
We love these girls so much!!!
Have a good night!
Bethany

Today is a better day...

I do feel better after a good night's sleep. I spoke with the nurse this morning about Olivia's feedings and I'm understanding how it works a little more. Again, she just needs time and practice. I wasn't understanding because she was doing so well and then she took a couple steps back. There really isn't a reason (which is what I was looking for and couldn't find) besides the fact that she is just not ready.
Please pray for Emma today. They are going to attempt getting her off of the jet. She will be on a conventional ventilator and they will raise her pressure to compensate for her being off the jet. So we will just wait and see. Her infection is gone now. They were waiting on that before they attempted to get her off of the jet. I'm a little anxious and nervous at the same time.
I'll post another blog at the end of the day to let you know how it goes.
Until then,
Bethany

I think Olivia is just wanting to wait for her sister...

I think Olivia is just wanting to wait for her sister. The girls will be 8 weeks old Thursday (which is 37 weeks gestation). Olivia is so close to coming home but just isn't real interested. All she has to do is drink 8 bottles in 24 hours and she would rather sleep. On Sunday she took 5 full bottles. The past two days she has not done as well. She will come in her own time and that is obviously not now.
Emma is staying the same. I know I should be grateful that the girls are not getting worse but I'm wanting them to take steps forward. I want them home. I know it will not be as easy as having them in the NICU together but I'm willing to give up easy to have them home and get to know them. I guess I'm just frustrated today. I'm frustrated that I have to gown, glove and mask to be with Emma. I just want to touch her hand without a rubber glove. I want to touch her head. Wearing all that stuff makes you really hot too. I want to hold Olivia at home on our couch where we can both be comfortable. I want to put her own clothes on her. She had an outfit on today that just made her look so drained and pale. That sounds petty but you should have seen it. I want Emma to be off the ventilator. I can't imagine having that thing in my throat all the time. I know I need to be patient but I'm having a hard time with that today. I'm ready to feel like their mom - holding them and kissing them. I still haven't held Emma. Maybe tomorrow she'll be well enough. I can't believe they're almost 8 weeks. I feel like each day they are there, I'm missing a part of their childhood. Someday I'll have them home and will be able to give them their first bath with me and see them smile at me. I'm sure tomorrow I'll feel better. Today I'm just frustrated.

Here are some new pictures...

Emma has an IV in her head - just to let you know what that is. They are both growing well and holding strong. Enjoy!

A nice break...

What a nice, relaxing weekend! We spent 2 days in Grand Haven, MI camping with family. My brother and his family flew in from CA, my sister and her family drove up from Cincinnati, my sister and her family came from St. Louis and my parents came up from Indiana. There is just something about being out in nature away from the busy life where you can just sit around a campfire and take in the smell of the pine trees, sit on the beach and watch the waves crash, watch your daughters play in the sand or eat the sand (Loren). : ) We love to walk out to the lighthouse and watch the boats come in. When the girls are better, we'll go back and spend a week there.

Before we left Friday, we found out Emma had an infection. When the tests came back with the specific infection we found out she had a yeast infection. It was in her tracheal aspirite which means it was probably in her lungs too. It was not in her urine or blood so that is good. They had to switch her to other antibiotics because the two they had started would not work for that specific infection. She seems to be holding strong. They caught it very early. She also pulled out her ventilator tube again and they had to reintibate her. Lovely! Emma Grace is growing well and is now 3 lb. 10 oz. She is getting so big!!
Miss O. (as her primary nurse calls her) is doing well. She is now 4 lb. 7 oz. She had a little bit of trouble over the weekend. They ran out of my breast milk and had to supplement with formula. I was in MI and couldn't get them more. She was pukey on Saturday and some on Sunday. We don't know if it was because of the formula or not. They are not concerned because most babies spit up some and she is not acting sick. Mike and I took in 50 bottles last night so we'll see if she is still pukey now that she is back on my breast milk. She did take 3 bottles yesterday and she took all 36 ml. of it. That is really good!! We have to get up to 8 in a 24 hour period.
Mike and I have our monitor and CPR training tonight. I'm anxious to get this ball rolling!
Well, that is all for now.
Until tomorrow...
Love,
Bethany

Depends who you talk to...

I'm learning that it depends who you talk to on the subject of what is going on. I was kind of panicking because one lady I talked to thought Olivia could be home early next week. So I was putting some effort into cleaning my house and getting it ready. It's pretty intimidating to go from a clean/sterile environment to my house of two children and dust. Then I start stressing because I haven't really been doing enough with Olivia to feel comfortable. I've been letting the nurses feed her the bottle because she is still in the learning process so I figure it would be better for them to do it, than have her fail with me. I didn't want to hold her back. I haven't learned how to prepare her medicines. I haven't learned how to prepare her bottles. I haven't watched the videos, etc. Anyway, so I called the nurse and spoke with her. She thought I had a good week before Olivia came home. I felt better with that. Plus she said that I would room in with her one night before she came home. Again, good news. So my goal is to get in there as much as I can next week and get familiar with my girl. I talked to the discharge lady on the phone and she said that she could also write orders for a nurse to come by the house and just check on us, weigh Olivia, etc. if it would make us more comfortable. It's nice to know that is an option. Once I room in, I know I'll feel more comfortable. I did with Alyssa. I have fond memories of getting up every two hours and feeding her watching Mike sleep soundly since he had to work the next day. :)
The nurse also suggested that we didn't bring her home the following day after rooming in but to go home and get a good nights sleep and take her home the next day. Sounds good to me.
Both girls are pretty much doing the same. They found the start of another infection in Emma's tracheal asperate so they have her on antibiotics to head it off.
I'm off to bed.
Love,
Bethany

The discharge nurse called...

Hello Everyone!

Yes the discharge nurse did call today about Olivia. Mike and I are taking the CPR course Monday night. The monitoring company is supposed to call us today to set up a time that we will meet them in the NICU for training at Olivia's bedside. She is taking 1/3 of her feeds. She has to get to full feeds. I think we will probably be bringing her home next Tuesday. Cray to think about!!! I'm in some serious nesting though trying to prepare.
Emma is doing really well. I'm so proud of her. She has come so far. She is feeling better every day.
Well, this is short and sweet so I'm going to go clean. : )
Love,
Bethany

Excited and nervous at the same time...

I have a million things running through my head....
First of all, Emma is doing well and still tolerating everything. They didn't change anything today. They just let her adjust to the changes from yesterday. That is good. She is so very sweet! You look at her and she is so swaddled up that she looks like she weighs 15 lbs. and all you see is the top of her head. I guess she is cozy. : )
Olivia graduated to an open crib today like her big sister Emma. She seems to be doing well holding her temperature. You know, you want them home so badly and then when the time comes it's overwhelming and I think you go through a little panic mode. That is how I'm feeling today. The nurse told me that they have made orders to get us into a moniter and CPR class. So right then I knew we were looking at a week, give or take. She told me that Olivia will go home on caffeine so she will need to be on a monitor. At this point, Olivia is on caffeine, Lasix and diarell. I don't know if she will go home on all those meds. But the nurse said that they will teach me how to give her her meds. So I need to learn that. I also need to learn how to make her feeds since they add a fortifier to the breast milk. They will replace the fortifier with formula. So I need to learn that. I need to watch some DVDs before I go home. I can watch them right there in the NICU while I sit with the girls. I guess my to do list just grew and maybe that overwhelms me.
So I came home tonight from seeing the girls with all that on my mind and then Loren decides that she is going to climb onto the kitchen chair and then onto the table. She is my climber!!!! aughh!!!! How am I going to do this? (is what I'm thinking). I know....very carefully. Anyone that is helping watch Olivia has to take a CPR course. I'm not sure about the monitor class. I know we can have up to 6 people in the class with us but I don't know if that is something we can teach people on our own. I'll probably feel more prepared as we get closer. Oh...also Olivia has to pass a car seat test. If she doesn't pass, she'll use this car bed they let you rent from the hospital.
I'm going to give my mind a rest and head to bed.
Goodnight!
Love,
Bethany

I spoke with the nurse...

I spoke with the nurse this morning and Emma's 6:00 a.m. blood gas was good. She is anywhere from 45%-60% oxygen. Her pressure is now 28. I don't know what the doctor's plans are for her today - they hadn't rounded yet when we talked. So we'll see...

The nurse told me after Olivia had come off of the oxygen not to be surprised if she had to go back on it because she has been breathing fast. But so far, she is still off which is good. She took 2 bottles last night and was able to drink all 16 ml. in 15 minutes. That is very good! We'll just keep on watching her too.

I'm trying to get packed. We are making a 3 day camping trip this weekend and I'm very much looking forward to it. I'm dying to get out there with nature and just drink it in. We'll see the girls Friday before we leave and Sunday when we get home.

Have a great day!!!
Bethany

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