8.31.2008

Posing for pics

Adleigh went NPO again. Her intestines had gotten dilated again and they didn't want to push her. So tomorrow she will get another xray and they will see if they are able to feed her again. We just want her to eat!

Liana looks like she is doing a lot better with more oxygen. At some point we will have to wean her off that again, but hopefully she will grow out of the bradys and desats soon.

Tomorrow we are going to start getting the nursery together! I can't wait to have it fixed up and ready for them to come home to.

Here are the girls with mom and dad (Wade with Adleigh and me with Liana).

More Oxygen

The doctors turned up Liana's oxygen to 4 liters. This is a step backward for us, but they think it will help her with her bradys and desats. And we definitely want to help her get rid of those. She had a brady yesterday morning, but the whole day after that she didn't have any episodes. So hopefully this is working for her. She is taking 3 bottles a day and seems to enjoy it a little more. Liana now weighs 4 lbs 5.2 ozs. Here is a picture of her sucking her pacy which looks so big compared to her little face.

Adleigh is doing great. They put her back on feeds and right now it is still breast milk. She gets 5 ml every 6 hours. If she keeps tolerating it then they will probably go to every 3 hours or possibly do 10 ml every 6 hours. I got some great pictures of her yesterday. She is getting so big, we are at 5 lbs 5 ozs now.

8.29.2008

Good Intestines

Adleigh's xrays of her intestines looked great!!!!! She has no obstruction or narrowing of her intestines. God is amazing. He protected Adleigh and allowed everything to be normal. They may have to end up giving her a formula that is more broken down than what breast milk is, but we should find out their game plan tomorrow.

We talked to Liana's NP and mentioned her going on reflux meds. She keeps having episodes around her feeding times and they have tried everything except giving her medicine. We just want her to be able to eat without having her face turn blue.

Thank you so much for your prayers! We are praising God and doing a happy dance right now.

Strength

We got some crazy news yesterday about Adleigh. Her xray of her tummy came back still looking pretty suspicious. So they decided to consult surgery to get their opinion on Adleigh. Surgery decided to do some xrays concentrating on her upper GI tract, but they couldn't fit her in until today. So sometime this morning they will put some type of dye thing in her stomach and then look at it through a series of xrays. They are mainly looking to see if she has an obstruction or if part of her bowel has narrowed. Then after figuring out what it is then they will make an assessment as to what needs to happen next.

When I heard all this news, I had a really tough time. I told God I was not sure how much more I could take. To be this close to their actual due date and then have the doctors say they are consulting with surgery on a matter really broke me. I talked with my friend Kelly and she was such an encouragement to me. I realized (with some of her wise words) that this is exactly where I need to be—in a place where I can't do it anymore. I was completely trusting God with our girls, but I also used some of my own strength to get through the day to day. Imagine how much glory God gets when there is no more of our strength to push us on. I will forever be able to look at this point and know that the only way I handled all of this is because He carried the burden for me.

To make a day even crazier I found out Liana had two big episodes (bradys and desats) that day. They decided to put her back on caffeine to see if that would help her remember to breathe. But with her episodes she ended up getting too cold and I couldn't get her out yesterday to hold her or feed her. I was so sad! I didn't get to hold my little girl yesterday.

Needless to say, just pray for our little girls to turn a corner and begin making the steps to be able to come home. Please specifically pray that Adleigh does not need any kind of surgery and that God will lay His hand on her stomach and heal it. We know that God spoke to us that the girls will be healthy and when I read this verse today I was encouraged:

"When God made his promise to Abraham, since there was no one greater for him to swear by, he swore by himself, saying, "I will surely bless you and give you many descendants." And so after waiting patiently, Abraham received what was promised." Hebrews 6:13-15

8.27.2008

Sensitive tummy

Adleigh went back to being NPO today. She just has a very sensitive stomach! She started spitting up a lot today and it was a brownish color. They did some xrays of her stomach and they decided to give her a rest until tomorrow. In the morning she will get another xray to see if she needs to continue tummy rest or if they can start again. She was getting each feeding through a bottle and she was taking that really well, so that is definitely a plus. They also took her out of her isolette and put her in a bassinet. She has been keeping her temperature really well so far. And she also got to have her sat probe taken off (that was the red light that was attached to her foot). So really the only thing she has holding her back is eating so please pray that she will begin to eat and tolerate it well.

Liana had another crazy brady when I fed her today. I hate those! She just needs to figure out to coordinate eating and breathing and sucking all together. That is a lot for a little preemie to handle. They are weaning down her isolette to try and put her in a bassinet soon. So hopefully she can stay warm like her sister!

I don't have a new picture of Liana tonight but here are two of Adleigh. One is her after she pulled her tube out so she doesn't have anything on her face and the other is from tonight when she woke up for me.


4 lbs

Liana went over the 4 lb hump last night. She weighs 4 lbs 0.9 ozs! Yay for Liana getting some meat on her bones. She has been doing amazing with her bottles and is taking 3 bottles a day in around 15 minutes. She does have the occasional brady (drop in her heart rate), but that is something she will grow out of.

Adleigh pulled out her feeding tube today and we got to see her pretty little face without a thing on it. I haven't uploaded my pictures onto my computer yet but I have a picture of her looking like a normal baby that I will post soon! We did find out that Adleigh has stage 2 ROP in zone 2 of her eye. The graph that they have looks like it is on the edges of zone 2 so I think that is pretty good, but they are watching her closely. Stage 2 can still clear up on its own so we are praying that Adleigh won't progress into stage 3. Once they go into stage 3 there is a laser surgery they perform. Our friends the Freemans found out that Kayleigh has stage 3 ROP and needs the laser surgery. I think it is scheduled for today so please pray for her. Here is a picture of the different zones of the eye. Zone 1 is where most vision occurs and our girls are normal in that area.

God has been so good to us. When I look at our girls and think back to what they looked like 2 months ago I am overcome with thankfulness. I mean seriously Liana was 1 lb 14 ozs! And now she is over 4 lbs. It has been a really long road and I am so ready for it to be over and get my girls home, but I have learned so much about patience and being thankful for the smallest things. We still have faith that our girls are going to come home as completely normal little girls! God is the supreme doctor and healer. Thank you for all your prayers because there is so much power through it and we have seen the evidence of it.

8.25.2008

Pretty Babies

Liana had a pretty awesome day. She did so much better today with her oxygen. She hardly had any desats or bradys. She is really getting the hang of eating from a bottle and it only took her 15 minutes to go through an entire bottle. She now weighs 3 lbs 15 ozs! We are so close to the 4 lb mark for her.

Adleigh had a great day too. She is still breathing without any oxygen and satting high. She has been having aspirate/residuals and tonight it had a slight green tint to it. If it starts to get really green then that isn't a good sign but right now it just looks like she is a little backed up and needs to maybe have a poop. But her tummy is still really soft and round so hopefully they can start her again tomorrow.

Here are two pictures for you all to swoon over!
Daddy and Liana

Adleigh looking bohemian chic.

Feeding update

Adleigh got to start feeds yesterday. They started her out with 3 mls and were going to keep her on that for a day or two until they were sure that she could handle eating. But last night she started having more residuals (food left in her tummy) and she would have that after every feed. So they decided to stop for a day and let her belly adjust and then start again tomorrow. Adleigh also had another eye exam yesterday and they want to see her again in a week. The official report hasn't come back but it still seems like it is just stage 1. We aren't really sure as to why they chose to see Adleigh back in a week and Liana back in 2 weeks, but I plan on asking the eye nurse today or tomorrow.

Liana did amazing with her bottle yesterday. We didn't have any bradys and she finished within 20 minutes or so. Also, it looks like her bradys during throughout the day are decreasing. When I called at 9 this morning she hadn't had any since 1 am! I am so proud of her.

In other news, I am starting to try and get our house ready for when they are able to come home. We want to do a really deep clean to get rid of any germs, Scooter hair, mildew, etc. So for this week I plan on getting everything in its place and get ready for disinfecting time. Not to mention we still have to get the nursery ready!

8.23.2008

Showing off a pretty face

Wow, today was amazing to see Adleigh without her nasal cannula! She was satting 100 the whole time which is the best she could possibly do. Her little nose looked so beautiful. I even think she was enjoying not having it in because she kept grabbing her nose like it was brand new to her. The nurse even said that they are most likely going to try feeding her tomorrow with an emphasis on taking it very slow. They want to make sure her tummy is going to be okay.

Liana did amazing with her feeding again today. She drank the whole bottle in less than 30 minutes and satted 100 the whole time and then at the very end she had about 4 ml left. She started to eat that little bit and then she had a brady! I keep trying to tell her not to scare mommy anymore but she doesn't seem to listen. That is Liana's biggest obstacle right now. She has about 4 or so bradys a day and they are usually about 30 minutes after she eats. They should go away with time so continue to pray that her little body will mature quickly and handle the reflux and not have bradys.

Her are some pics from yesterday and today.
This is Adleigh yesterday with our first captured smile.

Here is Liana sleeping peacefully.

And here is little Adleigh showing off her pretty face with no cannula. She does have some marks on her face from removing the tape though.

Off O2

I promise I will post more tonight, but I just needed to let you know that Adleigh is completely off oxygen!

8.21.2008

Fast

The girls are pretty much the same today as yesterday. Adleigh got to go down on her flow to 3 liters and at room air. And then Liana had 2 bradys when I tried to feed her a bottle so we had to stop and give it to her through the tube. I gave her a little pep talk and told her not to scare her mom anymore so hopefully she will listen!

Since I don't have much news about the girls I thought it would be good to let you know what the Joye household has done for the Daniel Fast. If you haven't heard about the fast yet here is what we are doing (I got this from Holly Furtick's blog) :Our church is doing a special fast for the next 21 days to pray for the work God is going to do in our church this fall. We will be abstaining from all meat and animal products, sugar, caffeine and foods with any additives. The fast comes from Daniel chapters 1 and 10 when Daniel did not eat anything from the king's table. You can read more about the details of the fast here.
One of the things about this fast is you need to really prepare and plan ahead for what you are going to make. Since I am at the hospital most of the day and don't get home until 7 or later it makes it hard to chop up tons of veggies and make something. So I have found a few quick and easy recipes that Wade and I will probably eat a lot for these 21 days.

1. Spaghetti: 100 % whole wheat noodles, tomato sauce, chopped onions, and chopped green bell peppers. This is super fast and tastes yummy.
2. Veggie Wrap: I sauteed a mix of veggies (Trader Joes had fresh cut Chinese Stir Fry veggies that I bought but you can also get a frozen bag) in a little bit of olive oil. And then put it in a Ezekiel tortilla.
3. Brown rice dinner: This one is in the recipe book (you can download from the link above): Mrs. Jones Brown Rice Dinner. I used a green pepper instead of a red pepper and I added fresh cut tomatoes. We ate this with some organic baked white corn chips. (This recipe has taken the longest because I had to wait the 45 minutes for the brown rice to cook)

So those are my super fast dishes I have made so far. Anyone else have something really fast that I can add to our list?

8.20.2008

Rocking some pajamas and a faux-hawk

The girls had a great day today. Liana finished her bottle with me in 30 minutes! I am so thankful that she has shown some improvement in this area. It also looks like she had less desats and bradys than the other day. She now weighs 3 lbs 9 ozs.
Here she is being all cute in her little pajamas.

Adleigh looked great today. She kept smiling at me and I was loving it. We still have a few days left of antibiotics so maybe when those are over we will finally start her feeds back up. We just have to make sure that her belly is ready for all of that. I got a good picture of her eyes open today and one of her little feet (even though you can see the sat probe and a band-aid from where they stuck her). I don't know if you can tell from the picture but she had a little faux-hawk going on there. I joked to her that she was already starting to take after her daddy.

On the road to recovery

Man, I have been so tired at night that I just can't seem to add in blogging to my nightly routine, but here I am giving you the update in the mid-morning.

Adleigh is still doing great. They say she is being really alert and moving around. She is doing great being on 4 liters of oxygen at room air. I am sure they will be able to wean her down even more soon. Yesterday the central line that she had surgically put in had some blood coming out of the incision. They checked everything and it still looked great it just might have been she pulled a stitch or something. So they changed her dressing and will keep watching it. There is a paste they can put on it to help any bleeding to stop. She weighed 4 lbs 13.4 ozs! Some of that is her retaining fluid so they think once she loses the fluid she might go back down a little. She looks like she is feeling so much better! We still aren't sure when they will start her feeds back. Her tummy still isn't completely normal but with each xray it looks like it might be getting a little better. She still has a few more days on antibiotics so they might just wait until they are finished. And lastly, we got the results back from Adleigh's eye test and she has stage 1 ROP in the second zone. So her and Liana have the same thing. Still isn't of much concern, but they will keep an eye on her.

Liana did a better with her bottle yesterday. She still didn't take all of it but she didn't turn blue. She seems to be going through a little bit of a weird phase. She had been eating her bottles like a champ and now she doesn't really care about eating from it. And she has had a few more bradys and apnea than she did a few days ago. They think it is just all reflux related so they increased the time it takes for her food to go in to 2 hours. I talked to the doctor about her brain ultrasounds and it is still slowly resolving. He showed me all her scans and you can see how it is starting to looking better. He and a nurse practitioner told me that the fact she doesn't need a shunt with a grade 4 bleed is a miracle already. The doctor even prayed with me after we looked at the scans...I love it! I just can't wait until we see all that God is going to continue to do in her life. I have no doubt that Liana's brain is going to be completely healed and that God will receive so much glory for it.

8.19.2008

2 months old

Adleigh and Liana turned 2 months old yesterday! Both of the girls were having a pretty good day. Adleigh didn't have any bradys or apnea so I am sure they will wean down her flow today. I got to hold her for a little bit and in the week that had passed since I last held her she has gained some massive weight. I felt like she was truly a baby now. She did have to get another blood transfusion because her hemoglobin was low. At some point they will let her get low enough for her to make her own blood, but since she is still getting over her infection they didn't want to push her.

Liana took a whole bottle from the nurse at 11 yesterday, but when I went to try at 5 she just kept spitting and gagging. At one point she had a brady and her face turned blue. I usually handle these situations pretty well, but seeing her face turn blue really scared me. Thankfully, she just had a lot of mucus in her nose and once we got that out she seemed to feel a lot better and could breathe easily. So we think that we might lower Liana back down to 2 bottles a day just so she isn't being pushed too hard. She also had her brain ultrasound yesterday and we haven't gotten the results back from that yet. Hopefully today I can find out something.

Thank you for all the prayers. Our little girls are getting bigger and stronger and we are so thankful at how God is already using them to touch other people's lives.

8.17.2008

Off the vent

Adleigh is doing great after the surgery. They were able to take her off the vent and she is at 5 liters on the nasal cannula. She seemed to feel a lot better and I finally got to see her today with her eyes open and moving around.

The girls each had their eye exams today and it looked like they were the same as last time. The eye exams are pretty stressful for them, but they both did really well. Liana needed to have a little more oxygen after her eye exam and they decided not to feed her with the bottle except for when I came in., so that she could recover from everything. Liana took 25 of the 28 mls she gets now.

Here is a video of Adleigh showing us her pretty face and acting like she feels much better.

video

8.16.2008

Central Line

Adleigh had the central line put in around 3:30 today. The surgeon said she did great. When we went to visit her after the surgery she looked like she was very relaxed and happy to be on some pain meds. She has been doing so much better with her breathing and if she hadn't been getting a surgical procedure done they would have tried taking her off the vent today, but now they will wait until she has woken up from the surgery. She is acting like she feels a little better with each day, but we have yet to see our little wide-eyed, curious girl. It won't be long before she is bouncing back though.

Liana didn't do as well with her bottles today. I think she only took about half of each one. When I was feeding her she was pretty much asleep the whole time. She now weighs 3 lbs 8 ozs!

Getting Better

Sorry my update is a little late. Just needed some sleep and went to a baby shower for my friend Janet Brey this morning.

Anyway, Adleigh seems to be a little more active with each new day. They were able to wean her vent settings some and she is doing much better with taking some of her own breaths on top of what the vent is doing for her. The doctor was going to give one last try for her to get a PCVC line put in. So they had a nurse last night that went to look to see if she could find a vein that would be good for the line and she couldn't find one. So it looks like they are going to do the surgery to put a central line in. The surgery for this is pretty quick and it won't really bother Adleigh much. And as soon as she doesn't need the line anymore they can take it out easily. So either today or tomorrow she will most likely have that procedure done. All of the cultures they have taken are still negative so the conclusion has come to that she has a viral infection. And her lungs have a lot of junk in them so they think she got pneumonia on top of that. But she is doing much better than a few days ago so I think we are at the end stretch with everything. By the way, Adleigh now weighs 4 lbs 7 ozs! Even when she is not feeling well she is still chunking up.

Liana is still doing amazing. They have her trying 3 bottles a day and she usually takes a whole one from me. She is doing much better with us handling her and the only time she really desats is if I am changing her diaper. She weighs 3 lbs 5.6 ozs! Little Liana is getting some meat on her.

8.14.2008

Trusting

It has been tough these last few days. Wade and I talked about how we are continuing to trust in the Lord, but it is so hard to understand why certain things happen. I just keep going back to the book of Habbakuk and remembering that the Lord is sovereign. I looked through some of my old blogs and I have seen how God has already answered so many prayers. So it takes remembering how God has worked in our past to help us in the present. God has spoken to us that the girls will be healthy so I am trusting in His promise.

So, the doctors still aren't sure of what is causing Adleigh to be so sick. So far the blood culture, urine culture, and lumbar puncture (spinal fluid) haven't had anything come back. The lumbar puncture (LP) was taken today at 5 so I wouldn't expect anything to come back from that yet. The LP will show if she has meningitis and if she does she has to be on antibiotics for 21 days. Adleigh's nurse today said she didn't think that she had meningitis since she was beginning to act a little better today. It is looking like she has a viral infection which they can't do anything for. Her body would just have to recover on its own. So they are trying to make her comfortable and give her all the support she needs with her breathing, body temperature, and nutrients. One big setback today was that the nurses were unable to get a PCVC (a more permanent IV line) in her vein. Basically they get 3 tries to get one in and today was the third try. So they will try to just use the regular IV for as long as possible, but the next step would be to surgically put in the line. So she would basically have a hose coming out of her chest. We definitely don't want Adleigh to have to go through another surgery so please pray that she will only need the regular IV and she can get it removed quickly.

Liana took another whole bottle today. It is so funny because for the first 20-30 minutes she acts like it is the most horrible thing ever and makes all kinds of faces at me and looks like she is about to cry. And then after 20 minutes she turns into a different baby and starts eating like crazy. So it takes a good 45 minutes to and hour for her to eat 26 ml (30 ml is an ounce)! She got the okay to get 2 bottles a day now so she will get one from me around 5 pm and one by the nurses at 2 am. Liana continues to do better with her oxygen and she seems to tolerate being touched a lot more now. She had a huge dirty diaper that ended up getting on her clothes and blankets and it took 15 minutes for me to clean everything up and she didn't desat at all during that time! I am so proud of her.

8.13.2008

What's wrong?

Adleigh is still on the vent and the doctors aren't really sure what is wrong with her. Nothing has grown from the blood culture so that is a good thing, but it also means that we don't know what she is trying to fight. She acts like she has an infection so they are giving her all the antibiotics she would need. They mentioned the possibility that it could be a viral infection which they can't really give any medicine for that. Her body would just have to fight off a viral infection on its own. Hopefully within a few days they can get her off the vent and put her back on the high flow. Then we will have to work back up on her feedings. But we are just praying that God heals Adleigh and gives her strength to fight off whatever is making her so sick.

Liana took a whole bottle today! It is still taking a lot of effort to make her eat it, but she eventually does it. She is being really alert when we take her out of the isolette and we love having those times with her. They moved her oxygen back up to 1 liter (she was down to 0.8) because she was desatting more and since the change she has been able to be weaned down to 21 percent which is room air. Next week sometime they will try to see if she can go to 0.8 again.
So there is a quick update for you...thanks for all the prayers!

8.12.2008

Back to the NICU

Adleigh had to go back to the NICU. The xray of her stomach this morning actually looked really good. So that wasn't the issue anymore. They were also able to wean her down on her oxygen to 0.2 liters. That is almost nothing! So today she started having lots of desats. This is not how Adleigh usually acts. She went from 0.2 liters up to 3 liters within 5 hours. So they did a blood count on her and she had a hemoglobin level of 7 (they usually want it to be 10-12). And it came back that her white blood cell count was a little off. Since all of this was happening they decided that she needed to go back to the NICU where she can get some extra attention. She ended up getting a blood transfusion today at 2 pm and she is going to get another one at 2 am. She was having way too many apnea spells (where she stops breathing) so at 6:30 pm they put her on the vent. I absolutely hate seeing her on the vent, but I know that this is what she needs to rest and breathe better. We started antibiotics just in case she has an infection and they 24 hour mark will be at 12 pm tomorrow.

Liana has been our little encourager today. She got to go down on her oxygen to 0.8 liters. She seems to like it but is still having to adjust to the difference. I haven't been able to get her to take a whole bottle yet, but she is getting the hang of taking one a little more and she doesn't get as mad when I put the bottle in her mouth. As soon as she takes a whole one they will let her try taking 2 a day. So my goal for tomorrow is to finish a bottle.

Here are our prayer requests:
  1. That the blood transfusion will help Adleigh regain her strength so she can get off the vent quickly.
  2. That there will not be an infection.
  3. That Liana will finish a bottle tomorrow.
  4. Liana tends to desat when we touch her so please pray that she begins to tolerate and even enjoy when she is being handled.
  5. And as always pray that Liana's next ultrasound shows her brain is clear of any evidence that there was ever a bleed.
Here is sweet Liana all bundled up with an awesome hat on.

A cute close-up of Adleigh.

And here is an awesome video of Adleigh from 2 days ago when we were able to feed her the bottle she finished and burp her!

video

8.11.2008

Adleigh update

I just wanted to put a quick update on Adleigh so you can pray for her today. I called this morning and found out they had stopped her feedings because she had air in her tummy and when they pressed on her stomach she seemed to be in discomfort. So they are waiting 24 hours and then seeing how her xray looks in the morning. If it looks better then she will get to eat again, but if it is the same or worse then they will have to send her back to the NICU so they can figure out what is going on with her. Right now she has an IV back in (so sad) and they think she just needs a little break from eating, but I will let you know the latest update tomorrow.

8.10.2008

Baptism Awesomeness

Today was amazing at church. We ended up having around 400 people decide to be baptized today at both of our campuses. Which means over the past 2 weeks 1,000+ people have been baptized. I was blown away by what God did in our church today. Also, the band did the song Healer and it was so powerful. I think a lot of people really connected with that song and I got really emotional singing it today.

Adleigh took one entire feeding through the bottle today...that was 35 ml which is a little over an ounce. I was so proud of her. Then I gave Liana a bottle today as well. She seemed to like it more than she did yesterday and it looked like she was eating but when we looked at how many mls she had eaten it was only 2. So apparently she just wasn't sucking hard enough to get anything out. Both girls were doing better with their oxygen saturations and bradys. We are seeing our girls overcome so many obstacles and we are praising God for all of that progress.

8.09.2008

Reflux and storm doors

Looks like the girls are enjoying progressive care. Today Wade's parents and uncle came to our house to fix some things before the girls come home. We now have a storm door on our side entrance because there was a bad draft there. They also worked on putting a closet organizer in the girls room. We are just trying to make sure our house is ready!

Everything is about the same with the girls today. Our main prayer for them right now is to grow out of their reflux. Their reflux causes apnea and bradys and although they recover quickly it still is something they have to really watch.

Liana tried to take the bottle again today, but was not having it. She only took about 4 ml out of it. But it won't be long until she takes a whole one. Practice makes perfect.

Everyone goes to Progressive

Adleigh and Liana are both in progressive now! Liana went today at 4:45 and so far she is liking it over there. She did have a couple of bradys (where her heart rate dropped) right before she was supposed to be moved so we had to wait a little while to see if she was going to be okay. Both girls are dropping their heart rate and having more apnea (not breathing) when they are eating and that is because they have reflux. Reflux is really common in preemies, but we want them to overcome this very soon.

Adleigh took another bottle again today and get 6 ml out of the bottle. This is 3 more than the day before. It won't be long until she gets the hang of it.

Here is Adleigh getting her bottle.

And here is Liana with her daddy holding her hand.

8.08.2008

Progressive Care

I called today to find out they were going to move Adleigh to progressive care today. She ended up going over there around 2 this afternoon. She has a great spot and it is so quiet and spacious. They also brought her down to .5 liter on her oxygen and she is still breathing really well. We attempted to give her a bottle today, but she only took around 3 mls. But she is learning and she will catch on to it pretty fast I am sure!

Liana will more than likely go to progressive care tomorrow. They turned her down to 1 liter on her oxygen today and they wanted to see how she did with it. So far she hasn't had too many desats. It is so exciting to see our girls finally becoming healthy babies! Praise our mighty God!!

8.07.2008

Taking a bottle

Liana actually drank 10 ml of milk from a bottle today. This is the best she has done with this so far and we were there to take a pictures and some video. So here is the short video we took!
video

I got to give Liana a tub bath tonight. She really seemed to like being all wrapped up in the warm blanket after the bath was over and it looked like she was enjoying her hair being brushed.
She also only had one desat episode recorded today which means she is becoming more stable with her oxygen. We are continuing to pray that she will be off the nasal cannula in a week.

Adleigh got off of her IV fluids called "triple mix" today. She is still on clear fluids and they will probably run that for a day or two. So we are pretty close to having that IV taken out! She is also doing so much better with digesting her food. She is having less aspirate and it isn't taking as long to go through her system. The girls keep having such great days!

8.05.2008

1 Liter

Adleigh went to 1 liter on her nasal cannula! She seems to like the change and hasn't desat any more than she did with 2 liters. She is working up on her feeds...she is up to 26 mls now. By tomorrow night she should be off of her IV fluids and then maybe Thursday she will be able to have her IV taken out. I am pretty sure as soon as she gets this IV out they will put in the order for her to go to progressive care.

Liana is doing about the same. They started giving her a bottle once a day yesterday. But she doesn't know what to do with it yet. She sucked a few times but then she chokes and forgets to breathe. But soon she will learn to coordinate how to breathe while she eats. They are also talking about Liana going to progressive care. Since she has MRSA they have a longer wait for a bed space, but I think they may give the order for her to be moved either tomorrow or Thursday.

Check out Adleigh being adorable yet again...(I do have a video, but it is too big so you will have to just see the pic right now)

And here is Liana with her primary nurse Darlania. We are going to miss her and all of our other sweet NICU nurses when we move to progressive. And Darlania is pretty sad about her leaving too!

8.04.2008

Bullet Point Updates

Here are a few updates from the day:
  • Liana's cranial ultrasound showed that it is still unchanged. This is still great news because it shows that she doesn't have any swelling in her brain. We are praying that her ultrasound in 2 weeks will show that the bleed is completely resolved and if they are coming home at the end of August then that would be her last ultrasound.
  • We found out the results of Adleigh's and Liana's eye test. Adleigh's showed that her eye blood vessels are still immature (which is the result we want) and Liana's showed that she has stage 1 ROP. Stage 1 isn't too bad and the ophthalmologist isn't concerned. This is something that can heal on its own and just needs to be monitored. He is going to check both girls in 2 weeks.
  • Liana may have the order written tomorrow to go to progressive care. They will try to send other babies if possible before her so that she and Adleigh can try and go around the same time.
  • Adleigh is working up on her feedings. She has still been having aspirate so right now she is at 23 ml and they can't go up on her feedings unless she has less than 2 ml of aspirate. We want to get that IV out!
  • On an interesting note, we found out that while we were blazing last night with no air that the NICU's air conditioning also broke and they were sweating it out too for a little while. They even took the clothes off the babies. It is pretty funny to think that the all of the Joye family was sleeping while it was hot! By the way, ours got fixed and it is cool again.
Thank you for all the prayers, love, and support!

8.03.2008

Baptisms, Eyes, and Air

Today church was amazing! We had spontaneous baptisms and so many people came forward. I was so excited and clapping and then I saw this middle school girl who was crying and after seeing her and thinking about all of the people coming down to publicly show their dedication to God I started getting teary eyed! It was awesome.

Liana had a bit of a rough day after her eye exam. The exam is pretty grueling and it really takes a lot out of the girls. Liana ended up vomiting/spitting up two times. She also had to go up on her oxygen percentage. She went through a lot today. We felt so bad for her. We haven't gotten back the results from the eye exam for either girl yet but we should know something tomorrow.

Adleigh didn't like the fortifier in the milk and she had too much aspirate so they stopped her on the fortifier and they are thinking of trying another type. They are holding her at 22 ml and tomorrow they will decide what their next step is. She still needs to get to 27 ml in order to be at full feeds and off her IV fluids.

When we got home from seeing the girls tonight, we walked into a house that was 89 degrees. Our air conditioning unit is broken. Apparently it will turn on but the fan doesn't work and it kind of sounds like it is going to explode and it is really hot to touch. So we turned it off and turned our ceiling fan on high. Hopefully our air conditioning service people can come out in the morning. We set up camp in the living room and have an air mattress to sleep on!

The girls keep trucking on

The girls are getting closer and closer to progressive care. It is awesome to hear the nurses say, "I will be back on Monday with her...that is if she is even here." How far we have come!

Liana has a cranial ultrasound on Monday. She has these every two weeks to keep check on any swelling in the ventricles and to watch how the bleed is resolving. All the doctors and nurses seem kind of amazed that she hasn't had any swelling in the ventricles. Wait until they see a completely normal brain on one of those scans!

Adleigh is still working on being on full feeds (the max amount of food for her weight). They added fortifier to the breast milk to give her more calories and when they did that she started having more aspirate (stuff left in her stomach). So, now they are going to hold her at a smaller amount and then see if she does better. They think she just needs time for her digestive system to learn how to digest this new part of food. So we probably have a day or two before she is off her IV fluids and on full feeds.

Both girls are supposed to have their second eye exam today. Please continue to pray that there will be no sign of retinopathy of prematurity.

I also had a shower yesterday and it was amazing. I felt so loved and the girls got lots of great things. We got a lot of our big items we needed and tons of cute clothes! Thanks so much everyone who came and for all the wonderful gifts. You all are so generous!


Here is a little family pic with Adleigh!

8.01.2008

It's August

It is officailly August. This is the month that we have been praying that the girls would come home. There are 4 weeks in August so if the girls are going to come home these are the things that have to happen before then:
  • The girls need to be off of oxygen. They are on 2 liters and we need to go to 0 liters. We are pretty close.
  • The girls have to learn how to eat with a bottle or learn how to breastfeed and take all their feedings that way. We haven't even attempted to bottle or breastfeed yet so we have some work to do in this area.
  • They have to regulate their own body temperature. They are both learning how to do this in their isolettes now. Once they have gotten good with that and stay hot in their isolette they will move them to an open bassinet.
There might be some more things they have to learn so if i think of any others or if I am told something else then I will let you know. These bullet points are what Wade and I are specifically praying for our girls to accomplish by the end of August. We just want them home so bad! Thanks for praying with us.

On another note...I know this is probably a longshot but I figured I would throw it out there. We have one White Martine Lifetime Crib made by Delta Enterprises and Babies R Us sold out of them and it has been discontinued. We want two of them so I went looking on Craigslist and found one, but the lady had already sold it. So if anyone has connections to this style of crib let me know because I would love to buy it from you!