Update..

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

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

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

Together at last!!

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

Feeds

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

Preparation for discharge...

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

Cookie Swallow

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

No go...

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

Are we turning a corner?

I got home last night and decided to practice some more bottle feeding on Olivia. I didn't have a whole lot of success at her 3:30 a.m. feeding. In fact, I was ready to throw in the towel. I just knew if it was hard for me to get it to not jam, then it would be hard for a baby to be patient while I worked on it. And the nurses would not have time or patience to deal with it. But then I had a revelation. So at my last attempt at 6:00 a.m. I tried my new theories and it worked. Olivia ate her feeds in 12 minutes. So I went in and fed Emma at 8:30 a.m. and she took her feeds (about half of what Olivia gets) in 8 minutes!!! She did awesome!! The whole goal we are trying to accomplish here is to feed her without her wearing out. Well, 8 minutes is great!!! It has always taken about 20-30 minutes. I spoke with her doctor who was back from her conference. She wanted to see the bottle and was impressed. She had feeding therapy come and watch me feed her at 2:30 p.m. That went well also! However, because Emma is a silent aspirator they want to make sure this bottle and milk combination is working and she is not aspirating. So tomorrow afternoon they will do another cookie swallow and see if anything is going into her lungs. PLEASE pray that this is not the case. If we pass, then we start increasing her feedings and as long as she tolerates without wearing out, we are on our way to bringing her home. The doctor came by her bed tonight while Mike and I were there and commented on how she looks like a different baby. She is alert and looks more healthy and comfortable and really good. I agree. We met with the surgeon and she agreed that we should give her another chance before we do the surgery. In the meantime, she has postponed her surgery to next Tuesday. Hopefully, we will not be going that route. Please continue to pray. We are almost there!!!!
Mike said his gut says that we have turned a corner. I hope so.
I must get some stuff done.
Love you all,
Bethany
Also...some of the doctors said that they might be asking me to help change some of their feeding protocols. They loved the bottle idea and might want me to teach it so they can feed the weak and sick babies like Emma that can't take their foods like stronger babies. Wouldn't that be cool? :)

Bottle feeding

Today went well. I went in and held Emma. She did great through the night and this morning. I've never seen her so awake. You could tell she felt better and you could hear her breathing was much more clear, not rattley. Her numbers were good most of the time. The one time she acted up was when they rounded on her. That is when she decided to have high respirations and brady. I was like "Are you kidding me?" The nurse told the doctor that she had not been doing that. Emma was just fussy at the time. She seems to be pretty gasey.
I showed the doctor the bottle and explained it to her and she said I could nipple her once a day and use that bottle. The doctor said she liked my ideas. Very good. So I fed her at 2:30 p.m. and she took the whole thing. It took a little longer at first because I was having trouble with the bottle. I eventually had to switch it out to the other bottle (I brought 2) and then she took off. It is a very tricky bottle because of the vacuum. The bottom has to be level or it loses its suction/vacuum. Anyway, I am going to be practicing again on Olivia tonight. I have to. It's the only way I'm going to get good at it. I'm going in tomorrow morning to feed her and I want to feel a little better about it. She did well afterwards. Much better than the last time we fed her a week or so ago. So we'll see...
Mike and I are still meeting with the surgeon tomorrow to discuss the surgery. We will probably make the decision to give this more time. But we want to know what it involves anyway.
This is going to be a week requiring patience. We definitely want her to let us know what she can handle. She is still at a 1/4 liter and that is wonderful! Please keep praying for her and us that we can finish out strong.
Love,
Bethany

Wow!!!!

O.k. so how do I keep my excitement under control????
Things have just been happening in a way that only God could be controlling it. Where do I start? So Mike has had, from the beginning of the thought of the g-tube, a gut feeling that it is not meant to be. He has been trying to figure out what it is exactly. Then we were supposed to have surgery Friday. It was scheduled and everything was set to go as far as having that reserved for us. Then the nurse said something to the surgeon and he had no clue that he was supposed to do that and he said I have a full schedule on Friday and I don't want to do surgery at night and he is taking his daughter to college that night and will be gone for 2 weeks. So there is that. The schedule now moved the surgery to Tuesday. Then I get this gut wrenching feeling that her reflux has to be playing a part in it. So I discuss with the doctors all my observations with her and her behavior, etc. They said we could try the zantac. Yesterday at 2:30 p.m. was her first dose. She did well during the night. I was there at rounds today and we talked about trying to nipple her today...but my gut didn't feel great about it. Thankfully, the doctor and nurse spoke before I did and just said let's give her one more day based on the fact that zantac usually takes 24 hours. If this was my one chance I wanted to give her a good shot and I thought one more day of the medicine would help. So that was that and I felt really good about it. Emma has been on 1/2 liter of oxygen and they said they wanted to try and get her down to a 1/4 liter before the surgery. Well, they tried and she was satting in the 80's so they had to keep her at a 1/2. They want to see her in the 90's. Well, I called in to talk to the nurse tonight and see how Emma is doing. She said, "Bethany, that zantac must be working because her throat seems to be less swollen. She is breathing better and her oxygen is down to 1/4 liter." Praise the Lord!!!! All her "symptoms" seem to be better. Less grouchy, respiration is down, etc. Yes, I'm trying to be reserved but I'm also excited.
So here is the other thing. I found a bottle that I know will work without having her work hard. This might be sad, but Olivia is my ginny pig. She takes thickened formula with rice cereal anyway. So I gave her the dosage that Emma would take and she took it in less time than her bottle (I usually don't make Olivia's as thick). I know this will work. There again I don't want to be to sure, but I'm sure. I know I'm not making any sense. So here again I will be in rounds tomorrow and propose my idea with the bottle. I feel like I have a great background given that I have experience with feeding a child with a cleft lip and palate. I have used the pigeon, haberman, and syringe nipples/bottles. This is not one of them but it has a vacuum that will take away the extra effort needed to eat the thickened formula. I have seen them before but my mother-in-law mentioned that it helped her feed her daughters (twins) when time was tight. So...I was in Walgreen's a while back buying something for Loren in a hurry (I think we lost her only pacifier) and I saw the bottles and I remembered what Linda had said. I thought I should just get them later. Then I was like nope let's just get them now. Won't hurt. So today, months later, I was reorganizing some things when I saw them. Then the thought occurred and so on and so on. Well, Mike and I have decided that we will not have the surgery unless these fail and I just really believe they won't. So there is my long-winded blog. I hope I can sleep tonight. If they let me use it tomorrow, I will be in there for every feed. I need to know that it is being used correctly and she has a fair shot. I will even stay the night. We are so close!
Please pray for continued improvement for Emma. Please pray that I will be allowed to try this bottle tomorrow. This is truely a miracle!!!! All things come together for good!!!
Love you all,
Thank you for all the support, prayers, concerns, questions and love. You make it possible to have this journey.
Good night!
Bethany

Zantac

Sorry it has been crazy and I haven't written in a couple of days....
I'm feeling a little better. The surgery date has moved to Tuesday. We meet Monday at 3:30 p.m. for a consultation with the surgeon to be informed and make a final decision. I will wait until then to give you all the specifics on the surgery. It will be two fold with a g-tube and a nissen.
However, in the meantime, I have been wondering for awhile how much Emma's reflux has been affecting her situation. After a few days of researching and thinking about things, I started to put together that not all of her symptoms could be because of the chronic lung disease but could be because of the reflux also. She arches her back, she is very uncomfortable, irritated, grouchy, not sleeping well, breathing fast. So I went out on a limb and asked the doctors today if we could at least try to give her some zantac to see if this helps anything. If it helps her to be more comfortable, I think her breathing would not be so fast (she breathes fine when she is not mad - when she is resting). I think it would help her sleep between feedings (not get worn out) and just overall be more comfortable. I needed to at least discuss this with the doctors before I say yes to surgery. Whether this works or not, I know I did all I could. They started Zantac today at 2:30 p.m. so I don't really know how long it will take to see any results. She is currently being tubed so that doesn't help her reflux because it doesn't have the rice in it. But if she does well, they might start bottle feeding her tomorrow with the rice cereal. We'll see...
I feel better just knowing we gave it a shot. If nothing else, I have peace about that. This will at least distinguish if it is her lungs or reflux. If this were to work, then we don't do the surgery. If it doesn't work, we probably will go for the surgery. Please pray that this will work. I know I said I would send pictures but I'm too tired. Hopefully tomorrow.

The car has stalled...

Yes, we are beyond EMPTY and the car has stalled. It is so hard to write when times are tough because I don't want to poop on every one's day. Usually either Mike and I are up when the other is down. This time we are both at rock bottom. Just completely drained. Feeling like there is no way we can keep going. It's been a hard couple of weeks for me. I'm feeling so empty myself that it is hard to give anything to anyone, especially my children and family. I keep thinking that I will wake up the next morning feeling energized and like I can keep going. And yet, morning after morning, I have to force myself out of bed and to do what needs to be done. Numb and robotic. My head knows I need to capitalize on my mom being here and get things done that need to be done. Things that are much easier to do without children. : ) And yet, nothing. Thankfully she is here and helping keep my house in order and things going. I don't know that I could do the same at this point.
Emma's surgery is scheduled for Tuesday. They moved it back because it wasn't fitting into the schedule. My mom is leaving Friday and Mike's mom is coming for the weekend. This will be a huge help. Then we will be on our own for awhile, which is fine. We'll manage.
Emma is weighing 6 lb. 7 oz. She is really gaining weight well. Olivia weighs 7 lb. 6 oz. They are both very sweet! and I still long for the day that they are together for the first time outside of the womb. I'm praying that Emma will be off the ventilator quickly. Her primary nurse seemed to think that she might be on it for a little while. She just wants us to be prepared for that. Emma's eyes are looking better but are still not completely formed. She will continue to be checked until they are. Her kidney test came back good for no reflux so they stopped those meds. Her calcium is still high so they are still baffled. We are looking at anywhere between 2 weeks til who knows when for her to come home. A lot will depend on how fast she comes off of the ventilator. Please let that be your biggest concern in prayer. We have come so far and are so close that we don't want anything holding us back from having our girl home with us. Alyssa asked why I was crying today. I just tell her that I miss Emma. I told Mike maybe we are both so empty and on the down so that next week when we need to strong, we will be. Maybe that is our up.
Well, I'm going to help get the kids to bed. I will try to send pictures with the next blog.
Love to you all!
Thanks for the prayers!!
Bethany

G-Tube...

Well, it looks like we might be heading towards surgery to place a g-tube. Emma just isn't getting better. And until her lungs heal more, she won't. That could take months. I spoke with the doctor in great depth today about her, her situation, the possibilities, the solutions, everything and I feel pretty good about the g-tube. Mike is going to be talking with the doctor so we can make the decision together. If we decide to head that way, we are looking at possibly doing the surgery this Friday. Emma needs to be home to grow and mature and heal. She also needs to be with us for developmental growth. The nurses keep telling us that she will thrive once she is home. They are taking steps to get her ready for surgery if that is what we decide. They are making sure she is getting her nutrition. They are running tests - Upper GI - to see about reflux. Emma has kidney stones with dialtated kidneys so they started her on amoxicillin to fight off any UTI infections that could arise and they are testing her for reflux with her kidneys - different from her stomach. The surgery seems minor from what I can tell. Probably 1 hour. The risk we have with her is that she will be put back on the vent. during surgery. Don't like it, but that is part of it. She could be off of it by the time she gets back into the unit. Or it could take a couple of days or longer. This will be our biggest prayer request during this time. If she comes off quickly, she could be home within the week. I will let you know how things go and what we decide. Please keep Emma in your prayers! Love you all!
Bethany

What to do?

It looks we are on a roller coaster with this feeding thing. Emma does well for a few days - is able to nipple everything because her breathing is o.k. Then goes a couple of days without nippling because her breathing is too fast or because she is worn out. It is very frustrating. We are so close and yet we can't seem to jump this hurdle. The question is how long is this going to take? If we give her 2 more weeks, will she be better then? Or will it take 3 months? How long do we think it is benefitting her to try or is it inevitable that we will go ahead with the g-tube in the long run? Right now we are giving her more time. But eventually if things do not get better we will need to seriously consider the downfalls of waiting too long - her not being with family, her not really having all the bonding time she needs, and her developmental skills (there is only so much they can do in the NICU). Please pray that this will be resolved and that we have the wisdom and peace to know what to do. I will be in there a lot this week - feeding her when I can and bonding more with her. Thankfully, my mom is still here and willing and able to watch my 3 girls so that I can be with Emma. I pray this week is a good week. Last week was hard.
Thanks for the prayers!! That is what will get us together here soon. :)
Love to you all!
Bethany

Pictures

Here are some pictures that I have been promising. Yes, I caught Loren in the act of climbing on her highchair. My mom was right by her so I felt safe to capture the moment on camera. Here is Alyssa going out the door for preschool. Hope you enjoy them!
The x-ray and all the blood work came back fine. No infection and the x-ray didn't look any worse. So they are going to try and nipple her again. She only took 15 at her 5:30 p.m. I know she was going to try again at 8:30 p.m. We'll see how that goes. If she doesn't pick it up again and is able to tolerate it, we'll be back on track to getting the g-tube. Obviously, that is not our first choice. But until her lungs heal, it might be our only hope. Please pray that we will have patience and wisdom during this time. We want to do what is best for her.

Head vs. Heart

It has been a trying last few days. Of course it is always 1 step forward 2 steps back. But I don't think that way. I can't think "Wow! That is awesome but I know tomorrow will be worse". And I know it's not really that "negative" attitude that it comes across as but I just can't adjust and take things that way. Emma was doing well taking 83% of her bottle and looking like she was ready to come home. She took 15 at her 5:30 a.m. feed, then 40, 40, 40, 40, 40, 40, 40 and then 15 again (5:30 a.m. feed). The next feed she took 30 but she was really tired. So two feeds in a row....is she wearing out? is it because the schedule was off a little? I don't know. But we take the cautious route which is good. They tubed her for the next 24 hours. They rounded today and decided they were just going to be safe and do a chest x-ray, CBC and more blood work. Make sure everything is still looking good and they are not missing anything. I do not know the results of that yet. Based off of that, they will decide when to nipple her again and how much. Mike and I had our home oxygen and pulsox training this morning. So we are pretty ready to go.
I just had a really hard morning. A lot of emotions building up over time and I have to let that out occasionally. Well, my heart and head collided today. My heart aches to have Emma home. I miss her. I want to hold her. I need my baby with me. My head tells me she is better off in there and that we need to make sure she is ready. My head tells me life is really going to be turned upside down when she comes home more so than it already is. I know I need to be patient, but my heart doesn't understand that. Emma is 105 days old. Mike doesn't like me to think about it that way. We are 17 days away from being in the NICU 1/3 of the year. When the nurses say, "Let's give her a few more weeks", that feels like forever. One day in there feels like a lifetime. So you can imagine how long 2 weeks feels. So after I cried a bucket of tears to my best friend Mir, who had her son in the NICU when he was born (that is how we met) and then cried to two nurses and just talked things out, I'm starting to feel better. I just felt guilty for being selfish for wanting her home. I know Emma has gone above and beyond what we have asked her to do and here I'm wanting her to do more. I want her to get better so she can come home and I want it done now. I'm not thinking of her when I feel this way, I'm thinking of me. She needs to be with me.
So now I capitalize on the time that she has left in there. I need to get last minute things in order for her to come home. Mike and I need to talk about her setup. She is coming home on oxygen. The tank needs to be centrally located. Her cannula has 25 feet to work with. Her monitors need to be set up so we can see the numbers at all times. I need to have the girls out of reach of their sisters (especially if they have a cold). I will have to wear a mask if I get a cold. A cold could send her back in the hospital in worse condition. I think I'm going to try and keep Alyssa in preschool but they suggested I make her change her clothes and wash her hands as soon as she gets home. I need to find someone who can take and bring home Alyssa to preschool. I can't load up all the machines into the van and an oxygen tank to take her and turn around in 2 1/2 hours and do it again. Especially in the RSV (cold) season. I have a lot on my mind that I need to figure out. We might just need to sit Alyssa out for this year..I don't know. I hate for her to give up this part of her life. But we have to make life doable.
Olivia is doing well. I get concerned about her getting sick too but not as much as Emma. Maybe I should ask if they can just keep her til next spring...O.k. not gonna happen. : )
Well, this is a bunch of rambled thoughts. I basically just dumped my mind on you -- sorry
I'll update with the test results as soon as I get them.
Bethany

By the end of this week....

So the doctor said Emma should be home by the end of this week. You heard it right! She has been eating well and has come a long way!!! The doctor said if you asked her last week when she would be coming home she would never in a million years say this week. The discharge nurse called me today to set up training. I will be trained on home oxygen, pulsox monitor and breathing treatments. I already have the CPR and the Apnea monitor training. I watched the rest of my videos. I think I'll bring in the car seat tomorrow and have her tested for that. So the ball is rolling. She needs to be taking all her feeds for a couple of days so we'll see. I definitely have to have all the training before she comes home so maybe by Friday. We'll see. I think I'll believe it when she is in our van and we are driving home. Thank the Lord!!!

Keep on praying...it's working!

Well....after a frustrating weekend dealing with the idea of the g-tube, we now have our hopes up a little. I really wasn't opposed to the g-tube until I heard she would have to go back on the ventilator. I went into the NICU on Saturday night from 9 p.m. - 11:00 p.m. and it was perfect timing. I just went in to bond with Emma - getting some snuggle time and I was able to feed her. I worked with her and figured out a great technique to feed her. I have had a lot of practice feeding Alyssa when she was learning with the pigeon nipple that I know what to pay attention to. I noticed that if I didn't give her some resistance and the nipple went too far in her mouth, then the nipple wouldn't work at all. She took 30 of 38 for me. Awesome!!! The nurse had me take home all her nipples and cut them and also make out a card with instructions on how to feed her so the nurses knew.
I called the next day and the nurse said she had a good night. She slept for her first feeding so they just tubed her. The next one, she wanted the bottle. She took the whole thing. The one after that she took 35 of 38. They tried to feed her the next and she wouldn't wake up. So they let her sleep. During the day on Sunday, she took 15, then 24, then 20. I spoke with the nurse this afternoon. She slept during her 8:30 but took the full amount at 11:30 a.m. and 2:30 p.m. Wonderful!!!! I have yet to hear how her 5:30 p.m. went. I'm going to wait until after her 8:30 p.m. to call. This has been such a glimmer of hope. Last week her breathing was so bad they couldn't even try to feed her. Now they are feeding at least 6 times a day if she wants to. We'll just see what this week brings. Hopefully she'll get up to full feeds and come on home. Thank the Lord she is doing well. Just keep praying!!!!!