THE PLAN...

I called the NICU yesterday and asked if I could speak with the resident (even though that is not my first choice). They said they would have someone call me back. Emma's doctor actually called me back which was so nice. I told her that I really didn't feel like I knew what was going on. She was so wonderful to give me a full report on Emma including the plan. She said everyone was pretty surprised that Emma came off of the ventilator. She has moderate lung disease. Any way you look at it, it is chronic lung disease. She just doesn't have severe or mild. It's moderate. She was getting respiratory treatments of the pulma chord (what people take with asthma - steriod puffers). She was doing well so they took that away. After a few days of Emma's breathing starting to get too fast they realized she was missing it. So they gave it back. They said it takes 2-3 days to kick in. Day 3 will end tomorrow afternoon. If by the end of the weekend she is not doing better, we will start the process of possibly getting a g-tube (feeding button in her belly). If by the end of the weekend, she is doing better they will give her a week to get her feeds down. If that is not successful, we do the g-tube.
Of course with everything there is positives and negatives. Emma needs to be home and bonding with us. She needs to be getting more developmental stimulation than in her crib in the NICU. She needs to be held by us. The doctor said she could stay in there another 3 months trying to eat but she really needs to be home with us. The g-tube would help her out. We could still try to bottle feed her, we just wouldn't wear her out. They are also going to check out her heart this week to make sure she is not having anymore heart issues....like pulmonary hypertenstion which is what she had before. The down sides...obviously surgery. The scariest part for me....is she would be back on the vent. during surgery. It could take 3 days to come off. It could take longer.
So this is all a lot to digest. Bottom line, she needs to come home. The g-tube would be temporary which is good. So we need to pray for a miracle - that she would be strong enough to eat this week. And if not that she would come through the surgery successfully without remaining on the vent. Definitely scary again!
The days to come will show us how she is.
On a positive note...Mike's coworkers bought us a triplet stroller!!!! We couldn't believe it!!! It was wonderful!!! We really need it since Loren is the age she is. What a BLESSING!!!
Please keep praying!!
Thanks!
Bethany

Feeding issues...

Hello! Let's talk about feeding issues for both girls...
Emma....has not been bottle feeding at all because she has been breathing too fast. So they restarted her breathing treatments yesterday(kind of like an inhaler for asthma). Hasn't helped so far but it might take a few days. Who knows? Joni and Kelly Conrad...did either of you deal with this?
Olivia...has gradually gotten worse with her puking. Especially the past two weeks. So two days ago, at Alyssa's physical for preschool, her doctor asked how Olivia was doing. I told her fine except for the spitting up. She said to try the rice cereal in formula. I did and amazingly she has stopped spitting up. I've never been so surprised. We went from projectile to nothing. So she has been doing that for 2 days now. I was still debating whether I should still pump and deal with the spitup or if I should just call it quits. My sanity is screaming to quit. It has been VERY hard. Usually one or all three of my children are crying while I take the 20 minutes to pump. It is so time consuming between pumping and feeding Olivia let alone cleaning all the parts that I barely have any time for my older two. But I thought before I quit I'm going to talk to my doctor about it. Maybe I could go to nursing exclusively? It would take a lot of work and she would still spit up but at least we could cut out the pumping. But we can't really do that because she stil needs the supplements. Well, today was her appointment and she did not gain weight well. They like to see 14 oz. for 14 days and she only gained 10 1/2 oz. So that just confirmed that we need to do the formula with rice cereal. That is a weight off of my shoulders I have to admit. I'm thankful I got them past their due date. They got a good 3 1/2 months with my milk so you know what? Good job Bethany!!!
So they will want to see me in a couple of days to see if she is picking up her weight gain or not. I'm waiting for the nurse to call and let me know what the doctor says.
We all, except Mike, have small colds here in our household so that is not fun. I have to watch Olivia carefully to make sure she is breathing o.k. (since she has chronic lung disease). Other than that, thank God it is Friday!!!
I hope we figure out something with Emma soon but I'm doing better being patient.
Sleepless in Washington,
Bethany

Teaching me patience...

I do believe that most of the things we go through in life are to teach us something. It just takes me awhile to figure it out. :) Isn't that how God probably is with us? So patient while we continue to make the same mistakes over and over. Or the fact that it takes a while to grow and learn and yet He is so patient. I had to come to realize again that God is in control and He knows Emma's path and what is going to happen daily. He says in scripture to "Be still and know that I am God". Yes, the "Be still" is hard for me. Always has been. If there is one thing my husband would tell you that I need to work on, it's patience. When I get impatient, my fears take over. The fear of losing Emma...feeling like we are going backwards...the fear of never moving forwards again.
With her bad blood gas, the fears started coming back. Most of all, the fear that her lungs were giving out. As I went in the hospital that night, I just put my hands on her and prayed for every part especially her kidneys, lungs, brain and eyes. I asked God to heal them all. That is all I can do - pray.
The next morning her blood gas was excellent. All her tests came back fine - no infection - and her x-ray showed improvement. The nurse said it must have just been a fluke or caught her at a bad time. Hey, whatever it is, I'll take. Or maybe it was the constant reminder of God that says, "Hey! I'm still in control here". Back off! O.k. so maybe He didn't tell me to back off but maybe just to butt out! Just kidding. Mom, don't fall off your chair. I just wrote "butt". : )
Anyway, an update is what you are all probably waiting for. Emma is doing fine. They finished up a 24 hour urine test today. They had to do it twice because they are having trouble keeping it in the bag. She keeps soaking her clothes, etc. So they were told just to do the best they could.
The feeding therapist came down yesterday morning and fed her, trying a different nipple that she cut. She took 30 out of 38 so it looks like it is working. However, Emma has been breathing too fast to eat. So they have tubed her since. The nurse said this is not a setback - her lungs are not getting worse - it's just a turn in the road. She said this process is very hard and we just need to give her a lot of patience. There is that patience word again. So please keep her breathing in your prayers along with her kidneys, brain and eyes. I have yet to hear the results of her eye exam yesterday. Hopefully today I will hear the results. Pray that the ridges will go away and the blood vessels will still completely form and mature. Pray that the grade 2 blood on her brain will keep resolving and that God will repair the damage that has been done. Please pray that her calcium levels will come back fine and that the calcium in her kidneys will disappear and that they will say her kidneys are fine and they can't explain it. I love it when that happens. Just like when Emma lived through the surgery and they couldn't explain it. Or when her heart healed within 3 days of the surgery and they couldn't explain it. That is what I'm asking for.
Here is some wonderful news - Olivia had her eye appointment yesterday and her blood vessels have completely formed and are "Mature". Yea! That is great news!!! We will go back in 6 months for them to recheck her. She is doing really well. I'm very anxious to see how much she weighs on Friday. I hope she is on track.
Alyssa had an awesome time at tumbling last night. Her sweet friend Ellie was there and that made it great! It's good for her to get out and to be involved in something. Life has revolved around the girls so much lately that it's good for her to have some "me" time.
Loren has a runny nose. I'm keeping the girls apart as much as possible and using the sanitizer between handling the girls so we'll see.
Well, Alyssa is needing my attention so I'm going to go.
Thanks for the patience that you all have given me through my ups and downs. Thanks for being there for me. I appreciate the emails and phone calls. And Betty - thanks for watching the girls for me yesterday!!
Love you all!
Bethany

Possible infection...

I went in to see Emma tonight. She is so beautiful!! She was wide awake just looking around. The nurse said they had done a test to see what her calcium level was and they got a bad blood gas. So they ordered a x-ray and several more tests. Her lungs didn't look any worse than her last x-ray. Two of her tests have come back and they are off but not too bad. They are still waiting for the results of her CRP and some others that will take longer. They went ahead and tube fed her. They are basically looking to see if there is an infection. She also gained a lot of weight in the last 2 days. She gained 4 1/4 ounces in two days. They are keeping an eye on that. Gaining too much weight is not good. We'll see what tomorrow holds and what those test results are. They are also doing a 24 hour urine to see exactly how much calcium is in her kidneys/body. I'm still not really knowing what is going on with that. I don't know that I will know anything until they can figure it out. She also puked while they were tube feeding her....I have never seen that happen before with her. The nurse said she just probably got her feeds too fast. I'm not really buying that. I suppose it could go along with an infection if she had one. We'll see.
I'm going to go now. God is going to have to carry me through this one. I know He will. He says so. I pray Olivia sleeps well for me tonight. : )

Downer...

Sorry this post might be a downer...that is just how I'm feeling right now. I feel like I'm at the end of the race and feel like I can't go on and I am not yet seeing the finish line. I feel like I'm putting all my strength into getting through just one day. I guess you could say my gas tank is empty again. All 3 of my kids at home are demanding in different ways. The house is always demanding. But this is something every parent feels...it's life right? Is the NICU still this taxing on me? or is it just the journey that is tiring? Is there going to be another wave of energy to get me the rest of the way through this? Is this just a wall? This is what has been going through my mind. I really feel like I can't do this any longer.
I feel like we keep hitting road blocks with Emma. The feeding therapist came in this morning and they worked with her bottle. Now she can get more out of it but she is working too hard. The doctor doesn't want to cut it or make it bigger though because she doesn't need to take in too much too fast. So she said that Emma needs to work harder at it. I guess I'm a little frustrated with that. They are watching her weight and calories because the last thing they want is for her to start burning calories because she is working too hard to eat and then lose weight. Time will tell I guess.
I'm really going to screw up this spelling....the endocrinologist called today and said that Emma's calcium is too high and they are looking into it. They are doing a genetic study and a whole bunch of other tests. They are looking into kidney problems, high blood pressure problems and hormone problems in our history. I am not sure what any of this means...hopefully I'll get more information tonight when I go in.
Emma gets her eyes checked tomorrow in the NICU. Olivia gets her eyes checked at the doctor's office. We'll see how those turn out.
Alyssa starts tumbling tomorrow night. That will be really good for her to get out of the house and get rid of some of that energy. She also starts preschool next week. Again, she needs that right now. It will be 2 1/2 hours a day for 3 days.
Please keep us in your prayers right now. I know Mike and I are both wearing thin.

Love you to all! Thanks again for the support!
Bethany

Results from the cookie swallow...

Hello! I'm going to make this quick because ironing, pumping and laundry is calling my name. And then putting away groceries, unloading the dishwasher just to fill it again and pick up my kitchen counters. And it's 10:45 p.m.
They did the cookie swallow on Emma and found that she was aspirating everything except formula with rice cereal. They tried breast milk, honey, nectar, etc. I guess this solves my "not producing enough" problem. Emma will be on Enficare with rice cereal (almost the consistency of oatmeal). The problem they had this weekend is that it is too thick for her to get through the bottle. But they need permission from the feeding therapist to either stretch the nipple or cut the hole bigger. Hopefully this will be resolved tomorrow. They have had to tube her all weekend. They were able to use up the rest of my breast milk though and that is good. Her last bottle of that is at 8:30 a.m. tomorrow. Just in time.
Emma is up to 5 lb. 3/4 oz. Yea!
We'll find out this Friday what Olivia's weight is.
I know we have a least 2 doctor appointments this week. Tuesday is for Olivia's eyes. Friday is for her weight. Alyssa's eye appointment is September 5th to see if there has been any improvement.
I'll update tomorrow and let you know what is going on with Emma. We are so close. We just have to get her eating. Please pray that this works.

3 months old!

Emma Grace and Olivia Michelle are 3 months old today! Wow! How time flies and yet it seems like forever. I know that sounds crazy and contradicting but it is true. And still they are both not quite the weight of a newborn.
Emma has been doing o.k. with her feeds but seems to be having a little trouble and ends up bradying. So they are concerned that she is aspirating milk into her lungs. So this morning she had a feeding therapist come and watch her eat to see what she thought. They decided to do a cookie swallow test. Where do they come up with these names? : ) What they do is feed her and while they are feeding her, they take x-rays to see if any milk is going down into her lungs. If it is, there are some things they can do - like thicken her milk with rice cereal. If it isn't, then we just give her more time to grow and practice drinking. Hopefully I'll find out the results in the next hour. She is still at 1/4 oxygen so that is good.
Olivia had a great night last night. Nope - still don't know what I'm doing differently. But I'll try to keep it up. : )
I was pumping today and looked over....Loren had stood up out of her highchair and was sitting Indian style on the TRAY!!!! Are you kidding me? What are these people trying to do to me. So the highchair is no longer a form of containment.
Alyssa and Loren found these ladybug outfits in the closet and decided to wear them. Very cute!
Loren has started taking off her shirt by herself. That is her in the picture climbing on the table AGAIN!!!!
Here are some pictures - Enjoy!!
Love,
Bethany

Looks like we are getting closer...

Well Emma is progressing with her bottles. She took another full one (35 cc.) at 2:30 a.m. Other than that, she has been taking between 20-25 cc. She only took 12 for her morning feed. Sometimes they do well for 3 feedings and then get a little tired. Then they start back up again. I'm going to get in there this weekend and do some more feeding and watch the videos we need to get her home. We also have to do the car seat trial. She is not quite 5 lbs. so we'll probably see if we can use the one we got for Olivia now that Olivia is over 6 lbs.
Emma's calcium is high. It's something they have been keeping an eye on to make sure her kidneys are o.k. She has not developed any kidney stones so that is good. It is just something they will probably have us follow up on. The resident and I talked today to try to figure out how soon she might be coming home. She said they haven't really discussed it because they didn't expect her to do this well respiratory wise. She said they are all surprised. She is going to get back with me.
So after my great night with Olivia the night before last, last night was horrible with hardly any sleep. I can't put my finger on it!!!! Why more gassey one night and not the next???? I don't understand these people I gave birth to.
I'm going to try to catch a nap today. : )

Not much to update...

Emma is still in 1/4 liter of oxygen and doing well with that. She has been taking between 10-15 of her 35 cc. The nurse tonight tried a different nipple so we'll see if that helps. Her last feeding which was her first time with that nipple she took 21 cc. That is definitely better. But they will have to do it a couple times to see if that is consistent.
Olivia had a great night last night! That is what is so hard. One night is horrible, the next night is wonderful. And I can't put my finger on what the difference is. One feeding she spits up tons, the next not so much. By the time I figure it out it will be different again. : )

Things are good and I'm off to bed. I never know what my night will hold.

Home Oxygen

Emma is down to 1/4 of a liter on home oxygen! So Emma has made some huge leaps. She went from 2 liters to 1 liter. Then they switched her over to 1 liter on home oxygen today. She was satting high (which is good) so the moved her down to 1/2 liter. She was satting high again so they moved her down to 1/4 liter. She is doing very well. As she keeps satting high, they will keep turning her down. The next step is 1/8, then 1/16, then 1/32 and then completely off oxygen. The good news is that she is free to go home as far as oxygen is concerned. That is why they call it "home oxygen". She is still learning on her bottles and that will determine when she will come home. Hopefully while she is learning to eat, she will come the rest of the way off of oxygen. Boy, that would be a miracle but hey! we've already had two miracles. The first is that she made it through the surgery. The second is that she pulled out of being so sick. We are hearing from nurses now how severely sick she was (so close to death). I think they feel like they can be open now that she is doing so well. Many of them are still so surprised that she pulled through. She really is doing well. So the nurses told us to get our house ready because she is coming home soon. Again, it's all up to her on how fast she learns to eat. She had her eyes examined today. He said that there is less congestion and that is good. I didn't ask for an explanation - I'm just happy she is better. They will check again next week. Also her grade 2 blood on her brain is resolving so that is great news. Go Emma!!
Olivia is doing well. She has 2 doctor appointments next week. One is the eye appointment and the other is her pediatrician for a weight check. We'll see how she is doing. It would be nice if her blood vessels have completely formed in her eyes. We'll see...
She still keeps spitting up like crazy. I have to watch and see if it gets worse - informing the doctor if it does. I'm tired of doing laundry. I might as well not bother taking a shower and just wake up in the morning and go straight to the fridge, get out her bottle and dump it down my shirt. Yum!!! :(

Oh well...I love my girls! 4 girls...yep, I still can't believe I have 4 GIRLS!!!! Oh the hormones that will be raging in my house....and all at the same time!!!!

Alyssa starts preschool September 2nd so we are looking forward to that. Loren is in the phase where she picks up everything and comes over and hands it to you and wants you to say "thank you" and take it. So most of my day consists of taking that stuff and putting it back. I don't really have anything better to do....like pumping or feeding people or cleaning. Nope...just putting stuff away.

I'm going to try to get some sleep - I only slept 2 hours last night so I'm a bit tired. Hopefully we'll have more good news tomorrow.

Thanks for all the prayers and love!!!
Bethany and Fam

I know it has been awhile...

I know it has been awhile...sorry...I'm sure I've kept everyone is suspense. I've just been in robotic mode lately. My emotions are tired. Emma is doing well but I find myself a little reserved with my feelings. Always cautious of a "down" coming. She is definitely surprising us though. They had tried going down to 2 liters again and she has done very well with that. Last night we went in and I scrubbed up with my sister and was ready to walk in when one of Emma's primary nurses mentioned something about Emma in a different room. She let us know that Emma had moved to room 4 - the "feeding and growing" room. After almost 3 months in the same spot, same room (room 1 - what they consider the Intensive Care Unit) and here she is in a different room, different spot (with a window view might I add). : ) I told Mike today that I really felt like one of us needed to go in and just cuddle with her for an hour or so. So I went in and held her. It was the first time she has let me hold her for as long as I wanted. In the past she has tolerated it for a short time and then she would start to desat. Not this time. I held her for an hour and a half. They also started nippling her. She has taken 7 cc and 10 cc with the nurses and then 6 cc for me today. Her full feed is 35 cc. She is doing well for having a bottle in her mouth for the first time. She really doesn't know what it is. She is used to her pacifier - sucking on it with nothing coming out. Now something is coming out and she doesn't know what to do with it. She has to organize the sucking, swallowing and breathing thing. When I called this morning she had been in 34-38% oxygen which is great. Well, when I went in she was at 41%. Up a little in oxygen - so I asked the nurse if she has been doing o.k. today. She said yes and she said she was up in oxygen to compensate for the change. I didn't know what she was talking about. Then she told me they had lowered her to 1 liter. Wow! While I held her she came down to 38% oxygen. That is really great! She really is moving along. We are still looking at 2-3 weeks before she can come home. We'll see. She will be 3 months old on Friday. Usually I would say time flies....not in this case. I think we have been here forever.
Mike and Alyssa went in tonight. The nurse told Mike that it was really great to see Emma doing so well. She said they are so used to seeing babies in Emma's situation come in and are there for a few days and then they pass away. She is one of the few that make it out of being so bad. She was really happy to see Emma pulling through. Go Emma!!!
Olivia is doing well. Everyday I'm getting more and more used to her - finding out the best way to burp her, the best bottle for her, how she does best doing this and that, etc. She had such a good doctor's appointment last Friday. They want her to gain an ounce a day. It had been 7 days since the last visit. So instead of gaining 7 ounces, she gained 10 1/2 ounces. That's my girl!!! You go porker!! She is up to 6 lb. 2 oz. She still sleeps a lot but I'm enjoying that right now. (At least someone is sleeping). : )
My mom came this past week and helped me out a ton. She really is an angel to me!! She helped me gut out my guest bedroom that is becoming the twins room. We took a full van to Goodwill and threw away some stuff. It felt great!! Plus we basically cleaned the house from top to bottom. It was tiring but much needed and it felt great. I'm trying to get my house as maintainable as possible. Plus she watched the 3 girls while I went in and stayed with Emma. My mom went back home on Friday and will probably come back when Emma comes home. I know I'll need the help then. Until then, Mike and I will take turns every other night going in to see Emma. They are so understanding in the NICU. It really helps take away the guilt we feel. It doesn't take away how much we miss her though. Just keep praying that she takes to her bottle well and her lungs continue to heal.
I'm doing pretty well. It's been difficult to keep up with my milk supply. I took my last 60 bottles in to Emma. That should last her about 2 weeks. I'm supplying enough to feed Olivia fresh milk. But that is it. I'm not making enough to stock up for Emma. I started this herbal stuff called Fenugreek and am pumping every 2 hours so we'll see if this works. It needs to because formula is just too expensive for 1 baby, let alone 2. If this doesn't work, there is one more pill I can try. It might sound weird but please pray that I can rest enough, not stress, drink enough and pump enough so that my supply will increase.
Mike is doing pretty good as far as I can tell. He and Keith worked on the basement this weekend. They got the framing done except for one wall. It's good to see that area taking off again. It is just hard for him to get down there. Most of his nights are in the NICU after work and then he comes home in time to eat dinner and then crash. His birthday is tomorrow so that should be fun.
Alyssa is doing well. She is pretty clingy these days. I love watching her and Loren playing together. Two days ago, Alyssa and Loren were in their room. Loren was in her crib standing up being loud. Alyssa was standing across the room. I heard Alyssa shouting to Loren "I'm in here with you". "And when I'm in here with you, you can't whine". It was pretty funny. Then they were playing in their tunnel (one of those slinky ones). They had part up on the couch and the other half on the floor. Well, Alyssa "helped" Loren fall down the tunnel onto the floor, then fell down on top of her. Next thing you hear is "Sorry" coming from Alyssa. then Alyssa climbs back up and out and says "I think she is hurt" as Loren is crying. It might have been one of those "you had to be there" but it was hilarious.
Well, I need to get to bed. Sorry for the long blog but it has been a couple of days since I have written.
Good night!
Bethany

Feels like forever....

I'm starting to feel like this is going to forever be like this - like it is never going to end. This roller coaster just won't stop and let us off. There is not a lot of change right now which makes everything seem so much slower. One of my favorite nurses today asked how I was doing. All I could think of to describe how I feel is that I feel like a robot. My emotions are drained and I'm just going through the motions. I've gotten so tired of trying to control this ride, that now I'm in the back seat just riding not saying a word - mostly because I'm just too tired. I feel like saying "Is it too much to ask for my girls to be together? For all of us to be home and be a family again?"
Emma is doing o.k. She is at 3 liters at around 34% oxygen. Definitely pretty good but I don't know what is going to make her good enough to tolerate 2 liters. They are going to try it again tomorrow. My expectations are not high - mostly because I don't see how she is any different than when they tried it before. She is very adorable. I held her today and rubbed her head. She liked it for a little bit and then she was done. She lets you know when she is satting 95-100 and then starts dipping down in the 70's and 80's. You know then that she is ready to get back in her crib. As soon as I put her back, she was right back up in the high 90's. She is still just working to breathe. They say that time is the only thing that will help now - time to grow and heal those little lungs. We'll see. Maybe she'll surprise me.
Olivia is doing well. I don't think she is gaining weight like they want her to. We have a weight check on Friday so we'll see what they say. Her reflux is not so bad if we sit her up and don't move her around too much. She is sleeping well. I'm thankful for the monitor. That allows me to sleep better - it's one less thing I have to worry about.
I need to go feed her right now so I'll write more later.
Good night

Back to 3...

I went in today to see and hold Miss Emma and she was very tired. She was desatting and had a brady but was trying to hold steady. After I left, they did an x-ray and turned her back up to 3. The x-ray did look better but after seeing her more awake and happy at 3 they decided to leave her there and just give her some more time. I am very o.k. with that. I want her better but it has to be in her own time. I want her better before she comes home.
That is pretty much the only news today. Mom and I will go in tonight and see her. Maybe Grandma can hold her for the 1st time.
That's all for now.

Down to 2...

Yes! Emma Grace moved down to 2 liters today at 12:30 p.m. and is doing well at 42% oxygen. We will hope that she stays strong at this rate. If she is doing well tomorrow, we might be able to try a bottle. That would be awesome!!!! We are definitely getting closer to coming home. I don't understand why, but it seems that it is always the hardest the closer it gets. You would think that it would be harder when it is farther away and doesn't seem like it is ever going to get better. At least for me, it gets harder as it gets closer.
A few of you have told me that they have had trouble posting a comment on the blog. Feel free to email me - I do love getting responses!!!! My email is miklikmb@yahoo.com.
Olivia is still doing great!! She seems to be doing well with this new formula. She is also doing better sleeping at night. I'm hoping to get in with Emma a lot more this week. Get her ready to come home. That would be awesome!!!
Well, I'm off to getting ready for the long night.
Love you to all!
Keep those prayers coming - they have really brought our girls a long way. Remember - Emma was not supposed to be with us and here she is. What a miracle! They both truly are!
I'll try to do pictures tomorrow. Oh...also...Alyssa got to hold Emma today. She loved it!
Good night!

Every day gets harder...

Every day gets harder that Emma is not with us at home. I don't care that it will be more work, I want her home!!! She is doing really well. She is still on 3 liters of flow at 34% oxygen. That is the lowest she has been on oxygen. She is absolutely beautiful!! She has really filled out. She weighs 4 lb. 7 oz. I'm hoping this week brings a lot of progress. My mom is coming to help out so I should be able to get in the NICU more. She is going to help me catch up on some sleep too. That will be NICE!!!!
Olivia is doing very well. She is at 5 lb. 9 oz. We are trying a new formula that is hypo-allergenic for babies that have trouble digesting cow's milk. It's geared towards colicky babies. She seems to be doing better already. Hopefully this will up her weight gain too. We go to the eye doctor this week on Tuesday and to the pediatrician on Friday. We have the early childhood development nurse coming on Thursday. I'm so glad I got all of Alyssa's appointments out of the way before the twins came home.
The eye doctor checked Emma's eyes this week and she has developed stage 2 level with her eyes. They have developed ridges. Don't ask me what that means because I don't know. All I know is stage 3 is the worst. She probably developed the stage 2 from being on the oxygen for so long. This could get worse slowly, quickly, stay the same or go away. There is no way of predicting what is going to happen. The one thing they said is good is that she is off of the ventilator. I spoke with her eye doctor (which is also Alyssa's eye doctor) and he is not concerned at all. She thinks she will be fine. So if he is not worried, I'm not. He is the best doctor we could have for them.
That is all for now. We just need to keep praying Emma home!!! Oh what a glorious day that will be!!!!

Due Date

Yes, today is August 7th, the twin's due date. They are 11 weeks old today. Emma is still hanging strong. She is still at 3 liters flow and 40% oxygen. I held her tonight for a short time. It was amazing just to look at her. She is sooo big compared to birth. She has tripled her size. She has really filled out.
Olivia is doing well too. We have a doctor's visit tomorrow and I think it will go well. I think the most challenging part will be taking Alyssa and Loren with me. We'll see how it goes.
I'm off to bed. I hope tonight goes as well as last night. : )

How do I say this in a kind way?

O.k. so I want to give myself the idiot of the year award. When Olivia was discharged, they told me to give her 38-43 cc. of milk every 3 hours. I had given her up to 45 after that because I thought she must be growing and needing more. So yesterday I was replaying over and over again how she has been at night. I kept thinking she acts like she is famished. Yesterday she was eating every 2 hours. So I thought you know what I'm going to try and see how much she will take. Yea, well, she downed 65 cc. like it was nothing. Then the next feeding came and I thought she probably would take a lot less since she took so much the time before. Nope, another 65 cc. So can I say I earned this award because she has eaten from 65-70 all night. And Amazingly - she slept like a champ the whole night. Are you kidding me? Was I so sleep deprived that this problem/solution didn't even cross my mind? I was just so used to 2 1/2 months of being so strict with her feeding schedule. It was always an amount - no more, no less. I am feeling better. I think I actually slept about 6 hours last night and it was great!! She woke up every 3 hours to eat. Thank the Lord I came to.

Emma is doing incredibley!!!! They lowered her yesterday from 4 liters to 3 liters and she has done great! They kind of expect her to compensate for the lowering of the flow by going up on the oxygen. She has not done that. She was at 40% when they did it and she is at 40% now. Praise the Lord!!!!

I'm anxious to see what they decide in rounds today.

Another day...

Considering that I had a baby (Loren) last April 07, it's funny how much you forget the all-nighters. I know I'm dealing with a lot more with Olivia though. Just her apnea machine alone can make you go crazy. Mostly all the alarms that her leads have detached are the ones that are the worst. Since she has been off of the formula, her spitting up has come way down. She has also started to stool again. She is growing well. She is 5 lb. 5 oz. The nurse will come again Wednesday and then she will be done for now. We have an appointment on Friday for another weight check. Even though Mike is not getting up to feed her, he has had it rough being up with her fussing and alarms, etc. Poor guy! He really tries to give me a break but it is hard since he has to get to work every day. The good thing is the more she grows and strengthens, the better she will do with her eating and burping and sleeping, etc. Emma and Olivia's due date is this Thursday, August 7th. Crazy to think about!
Emma is doing well at 4 lb. 6 oz. She is still at 4 liters on the nasal cannula. They said they might try to bring her down to 3 liters tomorrow. She is very sweet! Right now, Mike and I are taking turns to go to the NICU. He went last night so I will go tonight. We'll just keep it that way until my mom comes and stays with us. The earliest that would be is next Monday. We'll see how things go. I'm really wanting Emma home. I know I'm losing my mind and I know it will be extra work and I will be more exhausted than I already am but I really miss her. I hope it is soon. I just have this hole in my heart from her not being with us.
Alyssa is so helpful with Olivia. She loves to wrap her in the blanket. She likes to hold her and does a good job with it. They snuggle together on the couch.
I think that is all for now. I have ironing and laundry to do.
Love,
Bethany

I'll make this quick...

I'll make this quick because I need some sleep. Last night I was up with Olivia til 6:30 a.m. She would not sleep at all and was spitting up like crazy. She was constipated too. So after racking my brain, I have finally decided that for sure it must be the formula she is on. The Doctor has had me feed her just breast milk today and there has been no spitting up. She has also started to stool again. We'll see how tonight goes. I feel certain this is the problem because I keep going back to the time she was in the hospital. The day they gave her formula because she ran out of my milk, she immediately began puking and has had problems ever since. If I could, I would just feed her my milk. But they said because she was 2 1/2 months premature, she really needs the calcium and some other stuff in that for her bones, etc. They are going to consult with the main Doctor in the NICU that deals with all the formula, breast milk, feeding issues and see what he says. They might just try a different kind. If she does well tonight, then I will know for sure that it is the formula. If she doesn't do well, then I'm back to hitting my head against the wall. Otherwise, she is doing well growing. A nurse will be coming tomorrow to check her weight and see how she is doing. We have some really good snuggle time. She loves to cuddle. Despite the sleepless nights, it is so good to have her home.

Emma weighs 4 lb. 6 oz. She is growing well. I held her tonight. It is the best feeling to be able to go in and pick her up and hold her when I want. She loves to snuggle too. She has the best nurses! They love to spoil her with hugs and holding her. I really appreciate that because I can't be there all day and I love to know that she is being loved and getting attention. Today Mickey was snuggling her and that meant so much to me. Tonight was a little hard. I just want to take Emma home with me. We are going on 3 months here in another week or so. They haven't changed her oxygen because they don't want to move too fast. She is doing really well and we don't want that to change. So we are just requiring a little more patience. Someday, although it feels like it will never happen, we will have both girls home and I can't wait for that day!!! I'm so tired of going to the hospital. Well, my pillow is calling me.

Please keep praying for Emma's lungs - that they will be able to continue to heal so she can come home soon. Please keep praying for Olivia's intestines - that we can sort out this problem. We love you all!

Bethany