Beauty to behold

The beauty of the morning as I left for work today.

..."Surely your God is the God of gods and the Lord of kings 

and a revealer of mysteries...Daniel 2:47 

 

The importance of words

There will be no pictures for now, since my camera was dropped yesterday and broken while two sisters where trying to capture the following hairdo.  Glad Aunt Sherri was able to get the picture and share it with me.

I am constantly trying to teach my students the importance of the meaning of words and using them properly so I guess I better take my own advice.  It is amazing how quickly Lia is picking up English especially since she mimics everything we say.  Just a couple of days ago I heard her say, "Oh my gosh!"  I told her "Oh my goodness" really sounds better so she is so cute and is constantly saying, "Oh my goodness,"  with the sweetest little voice.  Tonight as I was trying to give her medicine to her she thought maybe she had a choice in the matter and said to me, "I'm not sure?"  Unfortunately, she didn't have a choice, as she repeated herself again and grudgingly took her meds.  It is very obvious which ones don't taste too well.  Hopefully this one won't be a forever medicine, like the other one probably will.  Each new day we are experiencing the newness of her precious language and we especially love it when we say, "I love you" and she says, "I love you more!"

We went for xrays again today to make sure there wasn't too much fluid building up around her heart and lungs.  The cardiologist wanted to look at the xray while we were there and she said everything looked about the same.  There is some fluid, but not too much and it isn't increasing so they seem to think this is ok and she is recovering well. 

Yes, we are going HOME!

Chest xrays looked good and after we pack up and get discharge papers we will be on our way!

God has blessed us in a mighty way and we are looking forward to a life of health and happiness with our youngest Princess!
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Going home???

We just completed hopefully our last xray at the hospital. If everything looks good we get to go home today! We will update when we know the results, but Lia is feeling very good and the smiles are returning! We even got to sleep last night without too many interruptions!
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No more tubes!

Lia's last chest tube came out and the only thing she has hooked to her now is her telemetry box that monitors her heart.  No IV's, no tubes, no needles and this box is just attached with five small leads so it isn't painful.  She looks like a little pin cushion, with bruises and holes all over her little body.   She had an xray this morning and the doctor said it all looked good and they were very pleased with her progress.  We will be at the hospital just a little longer and they will do another xray and bloodwork on Sat. morning.  If it looks good we will be going HOME!  We couldn't have asked for a better place to be for her surgery, but we are more than ready for a FULL nights sleep in our own bed.  

Sisters passing time

Spending time in a hospital can be very tiring and boring, but having a sister to share time with certainly helps. We are so happy to be at a wonderful hospital with a fun playroom and nurses that are genuinely caring. They do their best to help kids enjoy their time here as much as possible.

Lia is feeling much better today and her chest tubes have slowed draining significantly. We have an early xray in the morning and if there isn't fluid around her lungs we may be coming home soon. I'll update tomorrow when we get results.
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What two can do...

Two are better than one,
because they have a good return for their work.
Eccl. 4:9

Today was the first day I had to go back to school and David had to work. With Princess #2 in the hospital, we had to decide whether one of us would be missing work or we would accept help from others. Amazingly, here are the words from my Journey devotional for today:

"If we continually reject offers to assist us, we're depriving them
and ourselves of a blessing. God didn't intend for us to do everything by ourselves.
He has placed us in the body of Christ to help one another."

It was difficult leaving Lia this morning as I left the hospital, but Mimi stayed with her and it was obvious that they had a great time together, and this is what I found when I returned:

A very happy little girl and a Mimi who seemed to have enjoyed her day,
even though it was spent at a hospital.

Here are a few other photos showing what happens when you are bored in a hospital bed, but you have friends and relatives that like to help entertain.

Lia and her friend, Alli blowing bubbles together.

Lia and Teta demonstrating the many uses of tissue paper.

Lia and Daddy calling each other.

As I was posting this David was putting her back in bed for the evening and her chest tube accidentally got pulled. The nurse was afraid it had pulled away from her lung, so we went for an xray at midnight. Fortunately, the xray came back good and she was able to rest well with the help of a little pain medicine.

Now it's back to work for another day of inservice and she gets to stay and play with Aunt Sherri today and then Maw Maw tomorrow. Words can't express how grateful we are for the help we have been given from our wonderful family and friends and prayer warriors.

God answered our prayers tonight in an amazing way. Lia took her medicine perfectly! This may seem minor to some, but this morning it took three of us holding her down to give it to her. Then this afternoon we met a lady whose little boy had the same surgery a few weeks ago and guess what? She speaks Mandarin and talked to Lia about taking her medicine. I really don't know what all she told her, but tonight Lia took all three meds and gave them to herself without even a tear. We said, "thank you God," the whole time as we watched in amazement. Then we praised her, ate some chocolate, and did the happy dance while she said,"settle down!"
Thank You Jesus for sending our answer to prayer through a beautiful lady.
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Playtime

Lia finally walked a little and made it to the playroom. We are having a terrible time administering her meds, so please pray this gets better soon.
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Such a small thing, but such a big deal

After Lia's central line was removed, she had to begin having her medicines orally. This has not been easy and last night was a nightmare. She is on three medicines and has to get used to this, because at least one of these will probably be a way of life for a long time and the other two may be temporary. She screamed and cried and we offered every form of bribery we could think of. Hopefully we finally got them in her, but I think about half of each one was spit back out. Please pray that she begins to accept these better. The doses are too small to put in pill form so she just has to take the liquid for now. Honestly, this was much worse than taking out the chest tubes and we hated to see her crying and fighting like this. She has been the best patient we could ask for so it made this even more difficult to put her through this pain. Her English is good enough that she quickly told us, "medicine, no like it!" That was quite obvious!

We were awakened at 5:00 am to a nurse coming to draw blood after we were told that they wouldn't be doing this today. Orders changed, but no one told us and poor baby was in a deep sleep(I'm glad someone was)and was awakened with a huge needle thus causing even more tears.

I was in the bed beside her comforting her after this ordeal and she finally fell back asleep. About 6:00 am when she was sleeping comfortably again, I heard her breathe three little words that made my heart smile...

I LOVE YOU!

Oh, baby girl, how we love you and wish we could make the pain go away. Unfortunately, this is all part of the process we have to go through to make your heart better.

Thanks for the prayers and support!

Progress

After a very hard day yesterday and a screaming hard morning during blood work, Lia is doing great. We were moved out of PICU and upstairs to a regular room! We are in Rm 318 at Cooks and will be here until her chest tube stops draining. That could be anywhere from a few days to a few weeks. She can not go home with a chest tube so please pray it slows the drainage.
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Tubes are out

Some of the tubes are out and thanks to our Child Life Specialist, Angie, Lia did amazing! Angie helped entertain her and gave her some fun games to play on her ipod. We hope to move to a room within the next couple of days.

Now we are one step closer to looking like this again:

We are ready to see this smile again!

Tubes coming out soon

We are waiting on the dr to start removing tubes now. Lia will have her catheter, central line and two chest tubes removed. She is on morphine to hopefully take off some of the pain. Please pray God takes away the rest! Let you know how it goes soon.
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Chest tubes

Lia woke up in a happy mood this am, but nausea quickly set in again. They say this is all normal and not to expect an appetite for awhile. Her little body is having to adjust to a big change as her path of blood has been totally rerouted. They are hoping to take out one or two out of the three chest tubes today. This will probably be a very painful process so please pray for minimal pain. Her chest incision looks great and does not give her any pain that we are aware of, but the chest tubes are painful. The drs are trying to get us a translator now to help talk to her, so if you speak Mandarin please come for a visit!
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Power of prayer

How many times do we doubt the power of prayer and think our little measly prayer isn't effective.? We say we will pray for someone and often forget, wondering if it really matters anyway.

Let me tell you that we have truly felt the power of so many prayers the past few days! The peace that God has given us during such a difficult time has been amazing. Watching your baby suffer is not easy and this morning she was having a very hard time. Nausea was getting the best of her and she was just so SAD! When my sister asked how my day was I told her, "Terrible, sorry, but you asked." I know she asked some of you to pray(I saw it on her FB page). Guess what, Lia began feeling better, which meant that mommy did too! She actually tolerated a popsicle and some sprite.

Then this afternoon she had a few more bouts with nausea and was completely solemn. She didn't speak and didn't have hardly any emotion. It was so hard watching our almost always happy little girl like this. We are so thankful that my mom has been coming to give me a break during the day to go clean up and David's parents have been relieving us to go eat.


We have a room at the Ronald McDonald House and this has been such a blessing to us. I hope you will click on the link and see what a wonderful place this is. They provide us with meals in the evening all cooked by volunteers.


This evening while Aunt Sherri was visiting, Lia called Uncle Mike in the waiting room and talked to him. We saw our first smile when he began to tease her. After that, she ate a few bites of ice cream and talked to us and we even got a few more smiles. That certainly did our hearts good.


They were able to take out a few of her iv's and her pacer wires. You may notice the dark area in the picture under her arm. This is a chemical burn from some of the cleaning solution they used before surgery that dripped onto her skin and didn't get washed off. She is still draining far too much fluid from around her lungs to take out any of her chest tubes so please continue to pray that the drainage begins slow down very soon.

I also want to report what a blessing it was to visit with baby Landry's parents tonight. I found out she is 10 days old and has had two heart surgeries. I told them that many of us had been praying for her and they were so thankful! They almost lost her the other night when I asked you to pray and I am happy to report that she is doing much better.

The prayer of a righteous man is powerful and effective.
James 5:16

2:00 am bath and bows

Lia was sleeping so well earlier that the nurses left her alone. That meant that at 2:00 am it was time for clean up. She was such a great patient as they ever so gently bathed her and changed her sheets. They are so good about making this painful process as good as possible. After the wound cleansing, teeth brushing, new sheets, and being weighed she and Princess bear were given matching hair bows. She also had a popsicle with her favorite color purple on top. Now it is 3:00 am and we can catch a few more zzz's.

For an update on baby Landry you prayed for: I haven't had a chance to speak with her parents, but was so encouraged to see them with her at the end of our room in icu. Praise the Lord, God must be healing her tiny body!

There is a also a story in the star-telegram and mineral wells paper about baby Peyton Hood who passed away. This is such a reminder of the brevity of life and how we should cherish every moment. It should also remind us to be so careful this time of year when the snakes are out.

So we are seeing that the Lord gives and the Lord takes away, blessed be the name of the Lord.

Kiss your babies and cherish each moment. I know I am seeing the gift of life in a whole new way lately.



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A new day

Lia is finally getting ice chips and is beginning to wake up. Just as I typed this she threw up the ice. She lost quite a bit of blood, but is doing better.

We had a very depressing night and ask that you pray for Paytons family. We wish they could have had the miracle we all prayed for, but we now pray for God to comfort them in their sorrow.

Lia is resting well now and our family will help give us breaks through the day. Thank you for all of the prayers and please continue!

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Resting

We were finally able to get back to see Lia around 1:30 am. Her vitals are good and O2 sats are already at 98 after being at 83-85 earlier. She is breathing on her own now with a little oxygen. She has lost a lot of blood and has had to have blood, platelets and plasma. She is getting more now. They gave her benadryl for nausea and she is sleeping so I am going to take a short rest also.
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Payton

Baby Payton just went home to be with our Lord. Please pray for this family. We are grieving with them as we wait to see our Lia.
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PICU-A hard place to be

PLEASE lift up a little girl named Payton that is in very critical condition. She is two and had the worst snake bite the dr has seen. Drs can't save her now. Only God can. They have a huge team working to save her. We can wait to see Lia as we pray they can save this little one!
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Out of surgery!

Lia is out of surgery and we just got to see her as they were wheeling her to PICU. She looked better than we expected, but she is still on the breathing tube and will probably be for the next few hours. Dr. Tam met with us and said everything went well during the surgery. We are waiting to go see her in PICU. Thank you to all of our family and friends that sat with us throughout the day. We truly appreciate the love, prayers and concern from so many of you. It has been a very long day but we are praising God that it has been so successful. Lia has a long road to recovery, but knowing her fighting spirit we know she will pull through in no time.

I will be spending the night in PICU while David takes a short nap at the Ronald McDonald house across the street before heading to work in the morning.

9:45 pm update

Praise God her little heart is beating on its own again! We just got the best news saying that it is beating and Dr. Tam is sewing her up. The nurses sew up the outer layer, but he does all the inside layers. They did have to give her platelets for her blood clotting. We are so excited to hear that our Lord that held her little heart and protected it while the dr. did the work has allowed it to beat on its own once again. We have about another hour to go and we should get to talk to the surgeon that has been working on her for the past 5 hours.

To Him Be the Glory! We are tired but very encouraged! His peace has been perfect through this day. Please pray for strong stomaches on our part as we see our baby girl hooked up to so many tubes and machines.

8:40 hourly update

Nurse Dee just called and Dr. Tam is finishing up his part of the surgery now. His part started at 4:45 so he has been working about 4 hours now. Lia is still on the bypass so it all depends on when her little heart wants to start beating again as to when surgery will be over. Please pray that her sweet little heart will start working again on its own. They will call again in an hour to update. I hope to hear that her heart is beating on its own by then. Once the dr. finishes, the nurses will be doing all of the sewing back up. One of the nurses told us that he lets the ladies do the sewing so that it looks pretty!

I hope this makes sense. My mind is getting very tired now after such a long day.

We just got the message from a nurse that she is still on the bypass as Dr. Tam works. She is stable but they needed to give her heart a rest.
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Jesus is holding her heart now

We just got the call at 4:35 pm saying surgery just now got started and they are hooking Lia up to the bypass machine at this time. This seems like such a long time, but Dr. Tam explained that it could take a few hours before he even got to her. There is much to do esp. if they run into any scar tissue before he can even do his work. So at this moment a machine is pumping Lia's blood while her heart is stopped for him to work on it. Please pray for steady hands, wisdom for those working and Lia's little heart to restart the way it needs to in a few hours.
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In the best of hands

Lia is officially in surgery now. They carried her off sleeping peacefully to get her ready. Dr. Tam then met with us for about an hour giving thorough information. He went back to do his magic while God does his miracles at about 3pm. It should take about 5 hrs from this point but they promise to update through the surgery. I will update when we hear something. My dear prayer warriors, you are the best!
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Finding comfort in big sister's arms while we wait even longer. She finally fell asleep while we talked to the anesthesiologist. This is good because she was getting very anxious! LOVE how God calms our anxiety!
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Still waiting

We are waiting for them to come get Lia for surgery. We were told we have the BEST doctor, BUT not to be surprised if he runs late. This is typical. We thought they were taking her at 11, but no one has come yet. I wish we could just avoid this, but since that isn't possible we are ready to get this show on the road.
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Still smiling!

After the cath today we spent the rest of the day in the room at Cooks Children's Hospital. The anesthesia upset her stomach a couple of times, but she was finally able to eat this evening. She was so happy to have her big sister, grandparents and aunts, uncles and cousins come visit and bring her goodies.

Tomorrow her surgery is scheduled for noon and should last at least five hours. The drs are confident that this will repair her heart, but there are many risks involved. Your prayers for peace are getting us through each step of the way.

Sorry for any typos as I am updating from the tiny keypad on my phone instead of my computer.
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Feeling better for today!

Believing for tomorrow! Our God is faithful!
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Heart cath done

Just met with the dr and sounds like Lia did great. We are waiting in her room and she should be in here in about 15 min.

They are confident that the surgery tomorrow should do great things for her.

Can't wait to hug my baby again!
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Landry

Please lift up a sweet newborn baby named Landry that just went back for heart surgery.
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Heart cath

Lia just went back to have her heart cath. They will go in through her neck and groin to get a good look and make a plan for surgery. She hated the nose spray that made her loopy! Lots of tears. This should take about two hours and they promised to update during the procedure. Thanks for all of your encouragement and prayers!

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Pre-op

It is hitting me; we are about to go through some pretty major surgery. We just left the hospital after going through pre-op. Lia entertained everyone and was a great sport. God's peace is amazing even as we prepare for very tough days ahead. Today she had a nose swab, blood work, lots of pokes,an xray and met many new people. It was such a joy to have a wonderful translator named Regina explained everything and played with Lia, helping her feel at ease.

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"Jesus swimming?"

Did that title catch your eye?

After a full weekend of fun and adventure we were winding down for bed tonight. Bedtime is quite an ordeal, but has always been such a sweet time as we get to listen to our kids talk, pray and share their hearts.

While putting little Ms. Lia to bed, we were discussing our plan to go swimming tomorrow. Swimming is one of her favorite activities and she made it clear that she like the "big pool" over the "little pool." We named off each person that would and would not going and she wasn't too fond of the idea that daddy would not get to go. Tia informed me that it just wouldn't be as much fun without daddy since he is the "fun" one! Lia still doesn't understand why daddy leaves and goes to work. During the list of who would be swimming she said, "Jesus swim?" After thinking she was saying someone else I realized she wanted to know if Jesus would be swimming with us. I told her Jesus would not be swimming, but that He lives in our heart and she was perfectly satisfied. Oh, the sweet faith of children! What a comfort it is to know that He really will be holding my baby girls heart in the coming week and He is right with us as we are swimming.