9.25.2008

Together at last

Sorry it took a while for me to blog. Will it be okay if I use the "I have twins" excuse?

So Liana came home yesterday!! We got her here at 4:30 and then the fun began. We have gone through so many diapers and it only takes 4 feedings for both girls to completely fill up our sink with bottles. It is crazy. 
When I woke up this morning, I walked in to see my two beautiful babies in their cribs. I just kept smiling. I have waited so long for this. God has given me the most wonderful gifts. We prayed so hard for these two girls, as many of you did too, and we have seen God fulfill a promise in our lives. We went from the doctors saying that we might want to consider taking Liana off life support to having her in our house eating like a champ, breathing on her own, and completely normal despite what the doctors say about her brain bleed. Then we prayed hard for Adleigh to have her tummy better and just two weeks ago Adleigh had major tummy surgery and we thought it would be forever before she came home. But God once again showed us how much He loves us and let that be the last hurdle she needed to jump over.We are officially out of the hospital with Adleigh being there 97 days and Liana 98. I just want to say thank you to my heavenly father for holding me during those times that I wasn't sure if I could handle it and impressing on my heart that my girls would be completely fine even when their situations looked bad.  My God is so amazing.

Now I know you want some pics. So here is Liana coming home:Here is our first family shot.
And a close-up of our precious babies.
I had a video but blogspot is sweating me and not letting it post so I will try again later.

9.23.2008

Adleigh comes Home!

(The video took a little while to upload so this was written last night)

We spent the night with Adleigh last night and she ended up having a brady at 4:30 am. It was really quick so they were still okay with her going home, but they gave us the option of putting her on a heart monitor. We decided to have peace of mind and bring Adleigh home on the monitor. So we have had one feeding so far with her at the house and everything is going great! We have waited over 3 months for this day and the car ride home was mixed with this overwhelming gratefulness to God for bringing her home, an excitement to have our baby with us, and nervousness as we left all that we have known for 3 months and being solely responsible for this little life. Thank you so much for all your prayers and I can't wait to tell our girls what amazing people were going before the throne of God on their behalf.

After we spent the night with Adleigh, Liana's doctor came to talk to us about her and now she is coming home...guess when....TOMORROW! Wade's mom is going to keep Adleigh and I have to go to the hospital and room in with Liana during the day for about 8-10 hours so they know that I am okay with her heart monitor and then we will take her home tomorrow evening. Who would have thought that our girls would go home within a day of each other?!?! I am so excited. God has been so good to us and they are coming home healthy and happy little babies.

Here is Adleigh in her car seat about to go home.

Here we are in the car ready to take Adleigh home!
video

9.21.2008

The day is set

Looks like Adleigh will come home Tuesday! We are staying at the hospital tomorrow night and will have Adleigh in our room to make sure we can take care of her. I can't believe we finally have a day set. This could be the last night that Wade and I are at our house without a baby. Wow! She is doing great and she has had a few desats (her oxygen saturation dropped) with her feedings so we will just have to make sure that the new doctor for this week is okay with those desats and thinks she is ready to go home. (And just a note, I may or may not be able to blog from the hospital.)

Liana did have another brady today at 4 pm, but she came right back up so I am not sure if they will count that against her or not. I think since she was at rest when it happened it will start the countdown over, but if she has those every now and then but comes back up then we may just go home on a heart monitor.

As promised I have some pictures and a video. The first two are of Liana after bath time and the bottom two are of Adleigh. The video is of Liana loving her swing. She loves it so much that we are looking for this exact one to have at our house.
video

And to answer someone's comment...I am going to be very cautious about who the girls are around. The last thing I want to happen is to have the girls get sick and have to go back to the hospital. Preemies catch things so easily. Babies get the antibodies they need from the mom the last 3 months of the pregnancy and our girls were born exactly 3 months early! So, I am going to be a crazy person asking if you have been around anyone sick or if you feel slightly sick. I will make sure that you wash your hands thoroughly before touching the babies and probably give you some hand sanitizer too. So don't think I have anything against you, in fact I love that everyone is so excited to meet our little angels, but I just want to protect my babies.

9.20.2008

One brady

Liana went 24 hours without any bradys and then at 11 am today she had one. To her credit it was when we were putting her in a swing and somehow she kind of slumped over and had some reflux. So that is our bad. But the countdown restarted at 11 today and she has to go 7 days. I think now we know that we still have to be very conscious of her reflux and the Enfamil AR has helped her tremendously but it can still come up.

Adleigh had her CVL taken out today. And tonight she will finish the vaccine shots. She is doing great and eating like a champ. She is very messy eating and drools and spits everywhere. We are going to be using tons of bibs, thankfully we have a whole basket full of bibs.

That's all the news I have tonight. I promise I will post some pics tomorrow.

9.19.2008

3 months

I forgot to mention that yesterday our babies turned 3 months old and it just happened to be their due date too! Isn't that crazy. I have been to the hospital every single day for 3 months. It is seriously only by the grace of God that I have been able to do it this long.

Today I have some great news. Liana's nurses got her doctor to give her the Enfamil AR and her first time taking it was at 11 am. Since that attempt she has not had any bradys! I am hoping and praying that this is what she needed to stop having bradys and to make it home soon. We are praying that she is officially finished with her bradys and that she can come home in a week.

Adleigh is now in progressive care right across the hall from Liana. We could actually stand at the edge of each of their rooms and the girls could see each other. This is the closest they have ever been to each other. They are getting Adleigh ready to go home and they have set up all her follow-up appointments. I don't think I mentioned this but after her surgery they said that Adleigh wasn't growing lengthwise like they wanted and they were checking on dwarfism. Wade and I think this is completely ridiculous, but I guess they have to check it out. So today they did some xrays of all of her bones to get a base of her measurements so they can check it against that later on down the road. She also has jaundice from being on the IV fluids for so long so she had to have some blood work down by the GI (gastrointestinal) people to get a baseline for her bili levels and she will also see them again a little later after she is discharged. I think her immunizations will start tomorrow since today was such a crazy day for her. I just can't wait for when they are going to tell me the day that she is going to come home!

9.18.2008

Newborn size

Liana had some more episodes today. It was actually one of her worst days in awhile with how many bradys she had. So all the day nurses agreed that we need to either put her on Enfamil AR or add another teaspoon of rice to each ounce of formula she is getting. We had wanted to do this earlier but the day I talked about it to the doctor she was having an amazing day. But it looks like she is back to some rough days so I am going to ask again.

Adleigh didn't have her CVL removed today. It will be tomorrow when it is taken out and she is going to progressive care as well. She will start her immunizations tomorrow and it still looks like sometime early next week she will come home. I already told Wade to be prepared for me to go into task mode as I try to get our house completely ready for little Adleigh to get here. I am so excited!

Latest weights showed Adleigh being 6 lbs 11 ozs and Liana is 5 lbs 7 ozs. They are both in newborn size diapers and have pretty much outgrown their preemie clothes. My tiny babies are getting so big!

Episodes

So I have a mix of updates from yesterday and updates from calling this morning.

Liana had about 4 or 5 episodes yesterday where she dropped her heart rate and at least 2 of them she had to have moderate stimulation. I have had a lot of people ask me what these episodes are like so here is my best way to describe what she does: Liana finishes drinking her milk and for some reason (burping, trying to poop, etc) she has milk come back up her throat and it kind of sits there. She stops breathing and basically looks like she is choking but becomes very still and turns blue. She won't take any breaths and I have to stimulate her which is either pat her on the back pretty hard, flick her foot, rub her chest, anything to try and get her to take that first breath. A lot of times I have to do a mix of all those things to get her to breath but finally at some point she kind of gulps in some air. It still takes some time for her to get breathing steady, but afterwards she is completely wiped out and just falls asleep. It is hard having reflux.
So for the good news, Liana dropped her heart rate at 2 am and at 8 am, but both times she recovered on her own (no stimulation needed)! We are making some progress. If she keeps recovering on her own we can take her home soon. It is the ones with stimulation required that are keeping her there. My prayer has been that she will stop having the ones that need stimulation today and by next Thursday (she has to go a week) we can take her home! Please everyone who is praying for our girls pray for that specific prayer.

In Adleigh land everything is looking awesome. She is at 50 ml right now every 3 hours (10 ml away from 2 ounces) and she is being a champ eating it. She will reach full feeds (54 ml) tonight. The nurse told me that they are planning on taking her CVL out today. That is the line they surgically put in her chest that goes to a very large vein. All her IV fluids have been going through that but now she doesn't need it! Once this is taken out they are more than likely going to send her over to progressive care and let them give her the immunizations and she can be discharged from there. It definitely costs less per day for her to go to progressive! They are also checking her bili levels. This is jaundice but she got it because she has been on the hospital nutrients for so long. That IV fluid is harder on her liver. She will more than likely have to take a medicine (the lights don't work for this jaundice) to help her break down her bili and she will be on that for a little while. I think that is all the news. Keep praying, we are nearing the end of the hospital days!

9.16.2008

Counting Days

I talked to Liana's doctor and he said that she is doing so much better. He thinks she just needed time to get a little bigger and have her muscles be a little stronger. He didn't want to put her on the Enfamil AR because she is doing so well now and it doesn't have some of the nutrients she needs since she is a preemie. But we are just counting days now that she doesn't have bradys. She needs to go 7 days without one that requires stimulation and then we can take her home.

Adleigh will more than likely come home Monday or Tuesday. They decided to wait until she was completely on full feeds to give her the immunizations. That way if she gets a fever it won't mess up her feedings. So she will get those over two days which will be Friday and Saturday. She is still doing really well eating and she is at 38 mls tonight. We have to get to 54 mls for her to be at full feeds. She is getting to the point where she always wants to be held. Whenever we lay her back down she starts crying. Liana is the same way. I will just make it worse cause once they get home I am never going to want to put them down!

9.15.2008

Little ears

Not much new news today. Adleigh had her hearing screen today and passed in her right ear but not her left. It just means that she has some fluid in her ear. They weren't very concerned about it and said that with preemies it shows up a lot. So after she is discharged we will just go back to get it checked again. Adleigh is still doing great with her feeds and has passed even more through her system so it looks like we are almost home free! The nurse practitioner said it could be Friday at the earliest that she could come home!!!

Liana had less bradys today. I was going to talk to her doctor for this week but he had already left by the time I got to Liana. So tomorrow I will see what the plan is for her food. She is scheduled for another cranial ultrasound next Monday. I am praying that she could come home sometime next week. How about everyone join us in that prayer!

So much good news

Yesterday couldn't get any better. Liana was still off her oxygen and not getting so tired during her feedings. She seems to keep her oxygen saturation in the high 90s all the time. She still has some bradys associated with her reflux. When I fed her yesterday, she had two bradys because her food was coming back up and then 3 other spit ups after that but without the heart rate drops. So I am going to talk to the doctor today about trying the Enfamil AR. My thoughts are if she does the same thing then we can go back to breast milk, but if it does wonders for her then that is what she needs to have! So I will keep you updated as to what happens.

Adleigh is still eating great and she had a poop yesterday! This was the big thing we were waiting for because we needed to know if things could pass through her system after the surgery. The nurse practitioner also said that if everything goes according to plan that Adleigh could possibly come home this weekend. What?!?! Yep, we may have one of our babies home in the next week. So they are scheduled her for all the things she needs done before discharge (like the hearing screen and immunizations, etc) so we aren't held up with those. So pray for that to become a reality. I am a little nervous because I have had such qualified people caring for her for 3 months and I just hope I do a good job. Pray for Wade and me that we will be confident in taking care of our daughters. And pray that we figure out the magic combination of food and medicine so that Liana stops having these bradys and we can take her home too.

Here is Liana without her cannula looking uber cute.

And here is Adleigh yesterday zonked out on my lap.

And a sweet video of Liana while she is getting weighed. And just so you know Adleigh weighs 6 lbs 7 ozs and Liana weighs 5 lbs 4 ozs.

video

9.14.2008

Off O2

What a great day we had yesterday. I walk in to see little Liana's beautiful face...unobstructed. That's right she is off her oxygen! I was so excited. I didn't expect her to be off for awhile, but there she was chilling out, no desats. I was giving her the first feeding after she had had her cannula removed and it took her an hour to try and eat. I guess she was having to work a little harder in order to breathe while she ate. But after all of that they said she was still doing great.

Adleigh is still eating. She is up to 11 ml and goes up 4 mls every 12 hours. So I think by Thursday night she will be up to her full feeds (54 ml) if everything goes really well. Wade was able to feed Adleigh yesterday and he said she did amazing. It was one of the best visits he has had with the girls. Both of them were staring him down and smiling a lot. They love their daddy!

I also had a great shower yesterday and the girls got tons of cute clothes and some very important essentials for the nursery. Thank you so much to everyone who came.

9.13.2008

Eating again

I have got to stop waiting so late to post!
We got Liana a mobile today and it looked super cute. It even turns on if it senses her crying. That is one smart mobile. She was asleep when we put her back in the crib so we don't really know yet if she likes it. She only had two real bradys during the day and they were both totally reflux related. I just want to know what we can do to make this better. I know there is still the option of doing Enfamil AR (the heavy reflux formula) and at this point I just want whatever is going to make her the most comfortable. It can't feel good vomiting up your food at every meal.

Adleigh started eating today. She started out with some water/electrolyte combo just to see if she could keep it down and then at 8 tonight they were going to start giving her breast milk. She will get 7 ml every 3 hours and in the morning we should have a better idea if she is tolerating it or not. So far so good! Just keep praying that she has an easy time with eating this time around and that we don't have any setbacks. It is time to get her home and she has to be at full feeds for that to happen. Thanks so much everyone!

9.11.2008

The mobile

Just a quick update tonight. Liana did better today with her bottles and when I was feeding her she only had one small brady. She did spit up a ton right after she ate, but she didn't actually brady with that. The nurse said she thinks Liana will be in the hospital for at least 2 more weeks. She said Liana probably just needs to get bigger and that way her muscles will mature a little more and it will be easier for her to recover from her reflux.

Adleigh seemed a lot happier today. Before I got there she had pulled out her repogle tube (the tube that drains mucus out of her stomach). So the nurse decided to give her a little break and she loved it. And they are possibly going to start her feeds tomorrow! The developmental people decided to give Adleigh a mobile and Wade got to see her watching it. She stared at it forever and acted fascinated by it. So we are going to make sure Liana gets one now.

9.10.2008

Go away bradys

As I drove home tonight from the hospital I started thinking about ways I can steal my babies from the NICU/NPCN and bring them home. Well...I don't think I will do it, but if they are there much longer I can't make any promises.

Anyway, Liana is over the 5 lb mark now! She weighed 5 lbs 0.4 ozs! What a big girl she has become. She also has a little swing in her room and is put in it during the day to give her more things to do than just lay in her crib all the time. She seemed pretty tired today which made it a little tougher to feed her. She is still having bradys and that is what we really want to go away right now. Wade had a pretty scary moment when he fed her tonight. They are the worst things to go through and it really ruins the sweet time of giving your child a bottle.

During our stay in the NICU and NPCN our girls have usually been so calm and quiet. Maybe they were just too little to make much of a fuss, but Adleigh is making up for lost time right now. She has been really cranky the past two days. I am chalking it up to still having some pain from her intestinal surgery and wanting to eat really bad. But nothing can really console her. She won't take the pacy nor calm down if I tickle her head. She just cries for about 30 secs and then nods off for a minute and repeats the cycle over and over. But the more important news is that her tummy is looking soft and she is having bowel sounds and actually pooped a little yesterday. So maybe Friday they will start her feeds...very slowly. And...get ready for it...Adleigh is off oxygen again! She is breathing on her own and seems to be doing just great with it! I love it!

9.09.2008

Squeaks and Grunts

The girls were having a great day. Adleigh is still off the vent and in her crib. She seemed a little fussy today so we think that she might be showing signs of getting hungry. She slept for most of the day and then would wake up to give a good 15 second cry and then fall asleep again.

Liana had more rice cereal added to her milk. They also increased the amount of her reflux meds to see if we can get rid of some of the bradys that occur because of her reflux. She had some great awake time today with me and here is a video of her making some amazing squeaks and grunts. Not to mention she looks so cute trying to suck on her thumb and hand.


video

9.08.2008

Off the vent

Adleigh came off the vent today and they were able to stop the fentanyl drip, which was constant pain medication. She stayed awake the entire time I was with her which was like 2 hours! She seemed to be feeling so much better and hopefully in a few more days they might be ready to start some feeds back.

Liana is still doing really well. She had a few bradys this morning (drop in her heart rate) and they had to increase her flow from .5 liters to 1 liter. She can go home if she is on 0.1 liters so we have a little ways to go. I think all of her bradys and desats are still related to her reflux so if she keeps continuing this then they might put more cereal in her milk to make it even thicker.

If you have any questions, whether it is about what a term means or to ask something about our family (etc), please leave a comment and I would love to answer you.

9.07.2008

Sunday Morning

Today is the last day of the Daniel Fast. This also marks the last Sunday of our Gospel series and I am so excited to hear what Pastor Steven has to say to us. I am praying that even more people come to know Christ today. This fast was pretty hard just finding the time to prepare stuff and knowing that we couldn't make a run to Chic-fil-a when we were getting home at 9pm from the hospital, but it was so good to put my desire for food behind my desire for my God and use my time to pray for my church.

Adleigh, like always, is having a rough time recovering from her surgery. She kept looking like she was in pain and was having more bradys so now she is on a fentanyl drip (constant pain medication). So before she can be taken off the ventilator she now has to be weaned off her pain medications. So maybe in a couple of days she will be off. She is retaining A LOT of fluid. She basically gained a lb in 2 days and she looks extremely puffy. But the surgeon came by to look at her and said everything looked great on their end and she is recovering well from the incision.

The doctors went ahead and put Liana on a mixture of rice cereal and breast milk. Even with her reflux meds it just seemed that the breast milk was too light for her to keep down. With every feeding they would possibly have up to 15 ml of breast milk come up which is almost half of her food. So hopefully with this new combination of reflux meds and rice cereal she will be able to keep her food down which will ultimately take away her bradys. I am so glad that we are finally treating her reflux and I just know she is on her way to coming home!!!

9.05.2008

Success

Adleigh's surgery was a complete success! The surgeon was able to take out the damaged portion of the intestines and reattach the ends. We are so thankful for God answering our prayers to not have the ostomy bag. Now she will not have to go back later for another surgery!!! She is still on the vent since they gave her more pain medicine when she came back from surgery, but hopefully she will start to wake up and not need the pain meds tomorrow.

Liana had her oxygen flow turned down to .5 liters and is having a little more oxygen concentration with it. She seems to like this a lot better and this is much closer to the amount we can take her home on. The doctor also witnessed one of her reflux spells and decided to put her on reflux meds. It will take a few days to see if this helps her out a lot, but I think this will be exactly what she needs. Her brain ultrasound is still showing that is is progressing in the normal way and it is looking good enough that they said she won't need another one for about a month.

Today was amazing and thank you so much for everyone who went to God this morning and prayed for our sweet daughters. We definitely felt the power of your prayers today!

9.04.2008

Night before surgery

Adleigh's surgery is set for around 9:30 tomorrow morning. It is going to be a long day. Please pray that her intestines will be the best case scenario and that the surgeon can remove the damaged area and easily put together the ends.

Also, Liana is having another brain ultrasound tomorrow. She is doing so amazing and I can't wait for the scan to show she is healed.

I just read Psalm 104 (my dear friend Lisa Shea told me to read this passage today) and here are my thoughts the night before surgery:
What an amazing God we serve. The God who created all that is around us and controls the order of nature. He is mighty and just and has lavished blessings and love on us that we do not deserve. If just one person has seen this situation and has given their heart to our precious Savior then know that all of heaven rejoices with you! In everything we have been through I have felt strength and love washed over on me. God hasn't left us during this time instead he has shown himself to me in a new way that is much more intimate than my walk with Christ has ever been before. This is a difficult season, but it is one that I will remember back to and know that my God has taken the battle in his hands and in the end we will see victory. He is so good to us!

"I will sing to the LORD all my life; I will sing praise to my God as long as I live. May my meditation be pleasing to him, as I rejoice in the LORD." Psalm 104:33-34

9.03.2008

Intestines

Wade explained what is going on with Adleigh on his blog tonight, but I will just give a quick overview here as well. The test of her lower intestines came back and showed that an area in her large intestines has narrowed and is making it very difficult for Adleigh to pass anything through. So the only option the doctors have is to go in and cut out that portion and then they will either try to reattach the intestine or put in a colostomy bag. If she has the bag we would have to go back once she reached 12-15 lbs for them to go in and repair the ends. The surgery is planned for Friday morning at 10 am so please pray for her during that time. We are praying that they will be able to connect the intestine and not have to put on the bag since that would mean another surgery for her down the road.

Liana had a much better day today and only had one brady (too bad it was while I was feeding her). She now weighs a little over 4 lbs 8 ozs. We definitely needed to have a peaceful time with Liana to help us recover from the news about Adleigh today. Thanks for all the prayers...we need them!

9.02.2008

Swinging

Adleigh still didn't get to eat today. Her xrays showed her intestines were still dilated. She really needs to poop and when she tries to go she can't get anything to come out. What is so sad is when she cries while she is pushing because she is in pain. So tonight they were going to give her a suppository to help her move things through and then do a lower GI test tomorrow. That test will just make sure that her rectum and lower intestines do not have any narrowing. Adleigh got to have a swing beside her bassinet for some extra fun time. Here is her first time in the swing. She looks super excited...ummm maybe not.

Liana had a crazy day. She got cold and had to go back into her isolette. And then she ended up having a few more desats and bradys. They did a blood count to see if she has any kind of infection. The initial results looked good so maybe she was just having a rough day since she was cold. We also found out that her eyes have progressed to stage 2 like Adleigh's. Apparently they have to be identical in everything. Liana's next cranial ultrasound is Thursday. We are still praying for the "sun to stand still" and have her brain healed.

Their "due date" is September 18th and we are praying that some miracles will happen to get them home by that date. A lot has to happen but I know that God can do it in a day if he wants. I just miss them so much and it is getting so hard to leave them each night. I need them home.

9.01.2008

In da crib

Liana got moved into a big girl crib. She was keeping her temperature up and it looks like the crib can incline more which will be good for her reflux. She has been having less episodes, but she is up on her oxygen at 4 liters. Hopefully we can go down on that soon.

Adleigh was still NPO today. Her xray showed she wasn't ready to start feeds yet. But since this morning her tummy started feeling softer. Tomorrow they are going to get another xray and then hopefully start her on a pre-digested formula that she should have an easier time passing through. At some point we should be able to transfer her back to breast milk but we have to get her digesting something first.