HERE WE GO AGAIN...

We are stuck in a never ending nightmare. NIGHTMARE! Leila started getting sick again today. They don't know whats wrong yet. She is going up on her ventilator rate and oxygen. Practitioner suspects infection, possibly pneumonia.

She just came off antibiotics yesterday (I think) and she just started getting fed again today after doing so well through surgery. I am at wits end trying to reason with doctors, nurses and  managment on how to prevent so much infection.

Amie and I are losing our minds.

God said he wouldn't put more on us than we can handle? I'm looking for that passage. Probably have it out of context.

Please pray for Leila and us.

EIGHT WEEKS

Eight weeks is a LONG time. Especially when your world is turned upside down. Leila and Logan have grown so much over the past 8 weeks.

Logan was born at 1lb 10 oz. Today he is 4 lb 0 oz.

Leila was born at 1lb 11 oz. Today she is 4lb 4 oz.(Oh and she has been through two surgeries)

Leila was feeling so good today that she was bright eyed and awake this morning and smiling at us. It has been six days since her last surgery and thirteen days since her first surgery. The surgeon told us to expect 10 to 14 days before they started feeding her again. Today she had satisfied all the criteria the surgeons wanted before they start feeding her again. That's 4 days sooner than expected. God has been good to us. We are thankful for his grace and mercy.

Logan has been on CPAP for 7 days now. He has even been breathing on his own when he manages to knock the CPAP off his face (yea, completely off). Pray that both Logan and Leila continue to do so well that everyone is stunned.

We have had some tough times especially with hospital management. However, we have had some outstanding Nurses that I want to thank. Here are their names in no particular order (I'm sure that I'll get to update this list over the next several weeks).
Lori #1
Lori #2
Jenna
Jean
Teresa
Kelly
Meredith
Ashley
Becky

We have also had two outstanding doctors: Dr. Blake and Dr. Aggy

Amie got to hold Leila tonight. Here are the pictures.

Leila was so happy tonight

And she was so sleepy too

Another hair bow

They call CPAP the "Pig Nose" ... I can't figure out why

Gave Logan a pacifier. He was wearing that thing out.

Feeling pretty good

Logan's CPAP machine. It helps him breathe. It sounds like a mad scientist chemistry lab.

BATTLESCARS

Leila came through her surgery today. Dr. Kelly said that there were a few centimeters of her lower intestines that had to be removed because they were blocked from scar tissue (that was a result of her original problem). She seemed to be resting well this afternoon and I was told that she even opened her eyes some. She is going to have three battlescars: one from her drain tube that was in her side, one from her heart surgery and one from her surgery today. They will always be there to remind us of the hard times we all have been through.

The lady from infection control came by today to lay down the law (her name was Susan). Apparently she was on vacation last week and the next person in charge should have moved Logan on the day he started looking like he had an infection. So Susan made clear the difference between her and us on the food chain and decided that Logan would be moved to another pod tonight (although she wouldn't directly say it and we had to pull it out of her that she was making the decision). This was all done per "hospital policy" which nobody seemed to be able to understand last week and only Susan knew. Regardless, we couldn't do anything about it. We did sit down with Dr. Kirk and work out some of the friction we have had. We also talked to her about some of the issues we are seeing with hospital policy (especially the communication breakdown). I think she agreed with us and said she would elevate the issue.

This has become a real battle. Physically for my kids. Mentally, spiritually and emotionally for me and Amie.

A TIME TO PRAY

Psalm 56:3-4 What time I am afraid, I will trust in you. In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me.

It's time to pray again. The surgeon came to look at Leila today. He thought she was strong enough to have the inspection/surgery on her intestine tomorrow. Surgery starts at 9:00 am and should last a couple of hours depending on what they have to do. We are trusting that God will take care of her. The surgeon has to go in just to inspect her. She might be completely healed or she might need a small fix or it could be something a bit more serious. I believe she will be ok tomorrow, but I will still pray. I trust that God will take care of the things the doctors can't.

Oh, and Logan's cultures were negative. God is good. He is fine and I think he was fine all along. They are going to finish his antibiotics as precautionary measures so we have to wear the gloves and gown for another seven days...

GOT TO HOLD LEILA AGAIN

Both babies were doing well today. They are going to take Logan off the ventilator again today. I hope he does so good that he doesn't have to go back on it. Leila is going to have a contrast study done tomorrow (meaning they give her a fluid that shows up on x-ray so they can see her intestines and decide what to do and when to do it.) The nurse let me hold her today. It was awesome. Held her for an hour and a half. Here are the pics (I hope you're not diabetic because these are the sweetest pictures you've ever seen)

Me and my two pretty girls

RANT

Whew! We made it through the week and I didn't have a meltdown. Well, almost. Earlier this week, Dr. Kirk called me at work and said Logan was running a fever and she wanted to run every test immaginable to figure out what was wrong with him (including another spinal tap). I gave her consent because it is better to be safe than sorry.

In hindsight, I should have asked her if they took his temperature more than once to see if it was measurement error. (A week or two earlier we took Logan's temperature and it was over 100 deg. F and took it again an hour later and it was normal. Turned out that his temperature probe wasn't on him correctly and his bed got a little warm).

They grew a blood culture and "found" an infection in his blood ("found" because they generally will do several cultures to make sure they didn't contaminate it). And off goes Dr. Kirk following the trail of possibilities down to the very end (ignoring the fact that Logan was acting like a well baby and had no symptoms of being sick). They also took an x-ray of his belly and decided that he looked like he had the same thing his sister had (in spite of the fact that he has been digesting breast milk fine for the past 4 weeks). Two days later when Logan is still fine and not "clinically sick", Dr. Kirk is scratching her head and they decide that what they thought they were seeing in his xray was really where his diaper was folded over... By the end of the week, Logan was doing even better than he was the first day, especially with his breathing, and his second blood culture was negative (smells like they contaminated it).

After all that, they decided to do a third blood culture which we will know the results of by Monday. Here's the kicker, they were talking about putting him in the "sick baby" pod for babies with contagious infections and leaving him there until he leaves the hospital. WHAT? You want to put a healthy baby that you can't prove is sick in the sick pod?? This is ludicrous. We argued with the nurse and doctor all day. Finally, after we returned from dinner, we got to talk to the charge nurse (who must be able to get our concerns to the right people). She listened and seemed like she was going to do something to help us. If his culture comes back positive on Monday they will likely move him. We are very frustrated. Here's the data again and you can decide

Logan had a fever.

Not sure if it was a real fever or it was measurement error.

Fever was gone an hour later.

First blood culture grew bacteria.

Not sure if the blood culture got contaminated.

Logan's vitals look good.

Xray looks like intestine problems similar to sisters

Logan has been feeding on breast milk for four weeks

Intestines seem to be working for past four weeks evidenced by lots of messy diapers

Logan's blood gasses are good.

Probably mis-read the xray. What they thought was a problem area was most likely where his diaper was folded over.

Logan's ventilator rate is as low as they can go without taking him off it.

Second blood culture didn't grow anything.

Third blood culture pending.

SIZE OF A MUSTARD SEED

Ever had a little one go off to surgery? It's no fun. Especially when they are 6 weeks old and less than 4 pounds  heavy. Leila had her surgery to fix her heart murmur and to get a central line placed in her chest (it keeps her from getting 2 or 3 IVs in one day). About 2 hours of surgery. She came through fine and her vitals have looked good all evening. She is still sleeping off the anesthesia so she doesn't respond to our touch or our voices right now. Hopefully tomorrow she will be feeling better. And Logan is still doing ok. They didn't take him off the ventilator today because he has been having a few "spells" where he doesn't breathe and his blood oxygen concentration drops. The doctor also mentioned that it looks like he has a hernia which will need to be fixed later on.

Thanks to all who have been praying for Leila and Logan. Thanks to Dr. Kelly the skilled surgeon who was successful at fixing one of Leila's problems. Most importantly, thanks to Jesus for keeping Leila strong and bringing her through for us.

All you prayer warriors out there, don't stop praying. We got over the hill today but the next week or two we are approaching the mountain. I am praying specifically that Leila's intestines will heal completely without the need of surgery. I want this for Leila but I also want this to be a testimony to Dr. Kirk. Dr. Kirk seems to be a pessimist of sorts (but a nice pessimist). She also likes to point out what ailments our children have then extrapolate to the "possibility" of the worst possible outcome (which I believe is mostly for the benefit of the resident students and partly to show how much she knows. I don't appreciate it.) I pray that God will divinely heal Leila and prove that there are greater things at work here than technology and medicine.

ADVENTURES IN NOOGA LAND

Not looking forward to this week. Leila is having heart surgery tomorrow to close her murmur. The doctor's want her as strong and healthy as possible in case she needs intestinal surgery in a week or two. It will probably take a week for her to really heal up. Tomorrow is going to be stressful. To top it off, its going to be stressful at work later this week. Just want to warp into next Saturday and skip the next five days.

Logan holding onto Momma

Since the weather has been so nice the past two days, we decided to get out and try to get our minds off the coming week. We walked the pedestrian bridge over the Tennessee river, people watched at the park, walked around the park outside the aquarium and walked the trail next to the river. We saw some very funny and interesting things. I'll share for your enjoyment.

A guy was fishing off the river bank. He caught a couple of good size catfish.

This guy was about 10 feet away from the fisherman. I think he was waiting for dinner.

Some strange buoys off the river bank.

Not sure what they were doing. Dancing with colored blankets?

Water steps

Water cannons

Van-Face

It's not everyday you get to see superheros walking around in broad daylight...

CHEESE!

We had two camera hogs tonight. We gave Leila a "bath" tonight. Let's just say that it was almost equivalent to giving a cat a bath. She stayed mad until I got to clean her head. She liked that. Then I got to "brush" her hair. Ever brush your hair with a toothbrush? It works well for baby hair. When we got done with her hair we went ahead and brushed her teeth...

"Brushing" Leila's clean hair

After we finished with her "bath", we tried to calm her down by rubbing her head. She liked it so much that she decided to smile at us. We were able to catch a little smile on camera. It took about 30 minutes to catch this one.

Happy to be clean

 Logan had his bath earlier in the day. I think Logan got jealous when we tried to get Leila to smile for 30 minutes. He decided to throw a tantrum. When mom went over to his bed, he decided to stop his tantrum and smile at his ability to get his way. He was smiling for a solid 15 minutes and we caught a good one on camera.

MWAAHAHAHA! You came when I called.

THANK YOU

Thank you to everyone who has been praying for Logan and Leila. Thank you to all the people who have given their time to do something for us. Thank you to the people who have donated money, gift cards and food. Thank you to all the people who have cried with us. Thank you to the people who have sacrificed. We are grateful for good friends, coworkers, family, and church members who have helped us get to this point. We fully intend to send out thank you cards, but we have so many people to thank that we are overwhelmed.

Please contiinue to pray for Logan and Leila (especially Leila). The next week is going to be tough for her. The doctor told us today that Leila will most likely have heart surgery on Monday. This surgery is common in newborn infants. The heart surgery procedure will be a small incision in her side where the doctor will insert a small titanium clamp to close the blood vessel on her heart that won't close on its own. That titanium clamp will remain inside Leila for the rest of her life. The doctors say that the procedure is routine, but can still be risky.

Hang in there Leila. One day we are going to go home and play together.

HAPPY? BIRTHDAY

Exodus 17:11 (NKJV) And so it was, when Moses held up his hand, that Israel prevailed; and when he let down his hand, Amalek prevailed.

Moses holding up his hands is like prayer. We have been praying constantly that God would heal Leila. Have you? Don't stop praying because that's when we start losing the battle. A couple of relatively good days quickly turns into another nightmare.

We are facing what is possibly another few bad days ahead. Leila hasn't been doing well today. Doctor's seem to think infection AGAIN. The doctors don't know anything. Her breathing hasn't been ideal the past two days. She was clearly in pain today but nobody knows what from. I hate seeing her writhe in pain.  It makes for a not-so-happy birthday. 

Let's review the list of miracles that are on the "doctor's-dont-have-a-clue-and-God-needs-to-fix-list"

1) brain ventricles not improving

2) heart murmur not improving

3) going to wait 4 to 6 weeks from when she got sick before doing anything on intestines

4) more infection

5) two black toes 

6) breathing not good past couple of days

Mom and kids made these for me today

Leila's birthday wishes to me. A little bright spot in a worrisome day.

Yesterday Logan was looking around.

Another hair bow. Hope she starts feeling better.

EASTER SUNDAY

This is Leila and Logan's first Easter Sunday (or as my Dad likes to call them, Lola and Leigan). I think Leila was pretty happy about that. She was smiling at us all day long. First thing this morning, we went in and started talking to her and she smiled at us for the first time. Later on in the afternoon, we came back from church and started talking to her again and she was smiling again.

There hasn't been much change the past few days. The doctor told us they wanted Leila to be a little bigger before they give her the contrast solution to look at her intestines. They talked about doing it Monday but it might not happen for a few more days as long as she is doing well. Still no changes with Logan. They are both still breathing on the ventilator but at a low rate and 21% oxygen (like what we breathe).

We went home for a few hours to go to church for Easter service. It was a good day overall. I'll try to get Leila to smile again and hopefully catch it on video.

She is 5 weeks old and she already has 4 different hair bows...

Diaper time again.

EPIPHANY

Remember last post talked about how much it costs per day to have physician care (about $2500 per day) and that thankfully this is NOT what we have to pay since the insurance pays a lot of it. I have been thinking some. WHY does it cost that much???

When people want to eat tomatoes and there isn't much production, the cost of tomatoes increases a little, but not so much that most people quit buying tomatoes. Now think of this from a little higher perspective.

When your car breaks down what happens? Some people have the knowledge and skills to fix it on their own but most people don't. So most people pay the mechanic to fix their car. These days that costs about $70 per hour. Pretty expensive. Lets go one step further.

Now you have health problems or twin pre-mature babies in the hospital with problems. There are only a handful of people who have the knowledge and skills to fix you or your babies. That means the cost becomes what most people would consider depressing. Ok, that makes sense why doctors make so much money.

I hope you see the trend now. The bigger the problem (or the more severe) the less people that can help you and the more it costs to fix the problem. Seems logical, who said they didn't need math when they grew up?

Let's follow this trend to the very end and most important point. Now you come to the end of your life. You are about to cross over death and into eternity. Who do you call to fix this; the pool of people to choose from has been reduced to one person. Do you have enough money to pay the debt; No, credits and paper money are useless and all the precious stones in the world were made by this one person. Do you have the intelligence to talk or negotiate your way out of this problem; NO, He is the way the truth and the life. These things were determined once and for all before we even existed. The Good News is that Jesus paid our sin-debt by sacrificing his perfect (sinless) life on the cross. He paid the highest cost to fix the biggest, most severe problem in the history of man. No-one else could pay for it or fix the problem. Whoa, that's big stuff.

And he rose from the grave three days later. That's called Easter. Happy Easter everyone. Leila is celebrating Easter with the little pink bow in her hair.

They put a bow in Leila's hair. How adorable.

Here's a better picture.

Day ?? - I LOST COUNT

Ever had one of those moments where you do something and can't remember if you did it or not a few minutes later? I had that discussion with some of my co-workers a few days ago. You do something so many times that you can't remember if you did it or if you did it right. I tend to forget what day it is or what time it is since I live in eastern time and work in central time. Did I put the bills in the mail? Did I lock the car door? What did I eat for breakfast this morning? Did I eat breakfast this morning?

It seems that all I do anymore is pray that God will make Leila better. That her intestines would heal properly. That her heart valve would close up. That her ventricles in her brain wouldn't cause any long term problems. That there would be no disabilities. And on and on and on...

Leila was looking a little puffy today. The doctor said she is retaining some fluids but they were planning to give her a diuretic to help. They also think there is a blockage in her intestines now that has either been there from the beginning or has been caused by scar tissue from where her perforation is healing. More tests next week and more waiting. I'm not enjoying this patience thing.

Aside from that, everything else seems to be going ok. Logan doesn't have any serious problems right now and when Leila recovers from her problems things should start looking up.

Oh and I picked the wrong profession apparently. It costs about $2500 per day for just the doctor for one day of care. Fortunately, our cost is much smaller than that and the insurance company appears to be filing things correctly for the most part.

Enough rants. Here are the pics.

Leila resting today. Looking a little puffy. Hair seems to be growing some.

This is the respirator that helps them breathe.

The monitor displays heart rate, blood pressure, respiratory rate and blood oxygen concentration

Day 32

Brian is back at work full time which means he has been driving over an hour each morning, working a full day, running errands back home, driving over an hour back to Chattanooga, and only having a few minutes with our precious babies before it's time for bed and he has to get up the next morning and do it all over again. Yes, he is a wonderful man and I don't know what I would do without him! That my friends is why you have not been blessed with one of his wonderful posts in a few days. Sorry, you get one of my posts again :).

First, I want to say that it was awesome to be back at church on Sunday. We are very blessed to have such a wonderful church family and we miss you all very much. To all the kid's in children's church: Thank you so much for taking the time to make us cards. We really enjoyed reading them all and we miss you all more than you will ever know. Thanks for all the prayers!

The past few days there haven't been many changes for our babies. Leila is still recovering but seems to be doing much better. She is almost as low as Logan on her ventilator now. Her belly has been soft and looking much better and she hasn't had much coming out of the drain she has going into her stomach. Dr. Blake said yesterday that her intestines are not as dilated as others have made it sound. They are also hearing bowel sounds again. Never in a million years did I think I would be so excited over poopy diapers :). The surgeon said he thinks she probably has a small blockage due to scar tissue from when her intestines perforated. We are very hopeful that once they decide it's time to go in they will find that her intestines are just fine and working like they should. God is good and has definitely been watching over and healing my baby girl.

Logan has just been doing his thing and hanging out. They are slowly weening his ventilator back down to the lowest settings again. He seems to be doing well with his feedings and is steadily gaining weight. He hasn't managed to take off any more of his diapers but he is definitely starting to let us know when he is unhappy. Yesterday, he was making a face and was moving everywhere. Being momma I was trying to figure out why he was so unhappy. The nurse told me I could go ahead and change his diaper and see if that helped. It didn't. We tried different things and I finally saw that he had spit up which he was hiding pretty well. The nurse cleaned him up and he was fine. He did the same thing later and all it took to make him happy was the nurse rolling him over into a different sleeping position. We will for sure have our hands full with these two. It's amazing to see their personalities coming through even when they are still so little.

Here's their stats as of 4/2/12:

Leila weighed in at 2lb. 12oz. (part of being her stomach issues but we think she is evening out now) and was 36.5 cm in length.

Logan weighed in at 2lb. 3oz. and was 35cm in length.

A few pics that haven't been posted yet...

 

 

The first time Brian got to hold his little girl.

Just missing little man

Logan resting on momma

DAY 28 AND 29 - 1 MONTH

One month old today. Well, lets call them negative two months old today since they were born about 3 months early. Everyone who has a baby that is truly one month old and healthy should be thanking God every minute of the day. Don't take things for granted. It truly bothers me to see very pregnant women smoking or drinking alcohol. Some even do drugs while they are pregnant. But not Amie. She did everything right. She didn't even take Excedrin or Tylenol when her back and head were hurting. Now you see my frustration. I empathize with King David:

Psalm 13 (NKJV)
1) How long, O Lord? Will You forget me forever?
     How long will You hide Your face from me?
2) How long shall I take counsel in my soul,
     Having sorrow in my heart daily?
     How long will my enemy be exalted over me?

3) Consider and hear me, O Lord my God;
     Enlighten my eyes,
     Lest I sleep the sleep of death;

4) Lest my enemy say,
     “I have prevailed against him”;
     Lest those who trouble me rejoice when I am moved.

5) But I have trusted in Your mercy;
     My heart shall rejoice in Your salvation.

6) I will sing to the Lord,     

     Because He has dealt bountifully with me.

We decided that we needed to go to church today. So first thing this morning we went to see Leila and Logan before we made the drive home. The nurse practitioner told us that Leila's belly was starting to look bad again. They took two x-rays this morning and decided to put the suction tube back in her belly through her mouth. We heard later on that she had a bowel movement (yea, you wanted to hear that I'm sure) which is typically good news. Hopefully that means a step in the right direction. 

I got to hold Leila for the first time

Logan made it over 48 hours off the ventilator before he got tired. They put him back on the ventilator early this morning. Yesterday, the nurse put him on his belly to rest. Apparently he was resting so well that the nurse didn't want to bother him when it was diaper change time. So she put his diaper on backwards to keep from moving him too much. I thought it looked funny so we took a picture.

Logan's diaper on backward

One other thing. I know the "Helping Hands" at church have cut my grass. I thank you. Also, I am told that someone I have never met (who lives close to me) has been coming by to cut my grass and even fertilized it some. Whoever you are I thank you from the bottom of my heart. I love clean cut yards and it makes my day to hear that there are still Christ loving servants out there who will go out of their way to help someone in need. Thank you. I would love to meet you one day and thank you in person, but if that never happens I pray that Jesus will greatly bless you and reward you here on Earth and in Heaven.