Wednesday, October 30, 2013 Update

Today I arrived at the hospital around 3pm. There were a couple of wrecks on the Gulf freeway today in the rainy mess.  This was the view out of the window behind Lenah's crib.  You can see the Astrodome in the distance.

She was sleeping when I arrived.

Today was much like yesterday for Lenah.  Her belly was more bloated today though.  They are still waiting patiently for her to make a stool specimen for them to test.  She was having regular daily poo diapers until they decided they wanted to test one.  I think she may have test anxiety issues. Ha. She seemed happy to have me visit. She was smiling a bit here. Her liver specialist was back in town today, but was in surgery and I was unable to talk to her.  I will try to speak to her tomorrow and see what she thinks about the discussions the other doctors have been having.

She was smiling a bit here.

Thank you for checking up on Lenah and for praying!

Tuesday, October 29, 2013 Update

I arrived at the hospital around 2:30 today.  I wore a procedure mask just in case what I had was not just caused by allergies.  My throat does not hurt anymore, but I am still sneezing periodically.  Lenah was sleeping peacefully. She is currently doing pretty well.  There have been more discussions about her liver.  I will be talking to the liver specialist when she returns.   I think she is out of town at a conference. Lenah's belly was a bit bloated today and she was quite gassy.  She woke up for quite a while and was content to just stare at me peacefully.  Isn't she pretty? I may be just a bit biased.  Thank you all for praying for Lenah.

  She really likes her pacifier.

Sunday, October 27, 2013 Update

Last night, after we got home from the hospital, my throat started feeling scratchy and sore.  I also had a headache and felt achy.  Today my throat is still scratchy.  I think it may just be from allergies, but I did not want to take any chances by exposing Lenah to any yucky germs, so I did not go to the hospital today. I miss her. We called Lenah's nurse today.  She has had another peaceful, restful day. They have continued doing breathing trials throughout the day.  If I am feeling completely well tomorrow, I will  leave to see Lenah sometime after noon. Please pray that I feel well in the morning with no scratchy throat.  And as always, thank you for continuing to pray for Lenah.

Saturday, October 26,2013 Update

Today we all went to the hospital to visit Lenah.  She has had another quiet, uneventful day.  Her tummy looked less bloated today. She received another blood transfusion.  Her blood pressure, heart rate and oxygenation were all good.  They are still weaning her from the ventilator.  Everyone enjoyed visiting her today.  We also visited the model train display and the children's garden today. I hope all of you are having a lovely weekend. Thank you for checking on us and praying for Lenah.

Lenah and Sofia

 Edward and Lenah

 Lenah and James

 Lenah getting her "teeth" brushed. She used to hate this, but she seems to enjoy it now.

 Sarah and Lenah

Sweet baby.

Friday, October 25, 2013 Update

Today was another quiet day for Lenah.  Her white cell count had gone up yesterday, but was down some today.  She had an echocardiogram done today and every thing looks good for her particular heart anatomy.  She has still been having breathing trials where they turn down the ventilator and let her breathe on her own.  She started hyperventilating on one of her trials during the early morning, so they are going easier/slower on her trials over the weekend.  She had a more normal poopy diaper today. Her blood gases have been good today after she had a transfusion.  I had a shorter visit time with her today and completely forgot to take her picture. I will take extra tomorrow.

Thursday, October 24, 2013 Update

 Today Lenah is exactly 6 weeks old.  She was pretty irritable and restless through the night and this morning.  She was given ativan in the morning and has been calm and resting throughout the day while I have been here. Her white cell count was up this morning, but they aren't sure why. Her belly is measuring a little bigger today as well. She had an abdominal ultrasound and everything looked okay.  They are considering doing an abdominal cat scan tomorrow.  They have been doing breathing trials and weaning her off of the ventilator and they are taking things slow.  She is still on antibiotics and milrinone.  Her heart rate, blood pressure, and respiration rate have all been good. She is still being given IV nutrition.  Her weight is back up to her birth weight.  She had actually lost weight and was below her birth weight for a while. She has definitely grown longer. Here are her pictures from today.  

 

Wedesday, October 23, 2013 Update

 Today was pretty uneventful.  Lenah slept most of the day.  She decided to wake up for just a bit shortly before I had to leave to come home.  Her tummy still seems to be doing well.  They are talking about trying to remove her from the ventilator on Friday.  James and I are not comfortable with this at this time.  We will be having more discussions with her doctors.  We will also be speaking with the liver specialist again this week.  Her little umbilical cord scab fell off today. I know that's a bit yucky, but it's an accomplishment for her. I am thankful for peaceful progress.

Tuesday, October 22, 2013 Update

I cry on the way to the hospital and I cry on the way home.

Most days, I cry at the hospital.

Sometimes, when it is time for me to leave home to go to the hospital, I wish I didn't have to go.

But always, when it is time for me to leave her, I don't want to go.

I wonder if there is some particular order in which I need to say my words of prayers so that God will hear and answer.

Or maybe I'm just not asking often enough.

I wonder if I should be fasting.

Should I ask all of you to fast?

Should I make bold declarations and and claim she is healed despite the evidence before me?

I want her to be healed.

Desperately.

She is really wonderful and if the Lord wants her home sooner than later, I understand.

I've been thinking about Lazarus lately.  Jesus raised him from the dead.  The VERY dead.  The rotting, stinking, decaying dead.  I can never know all the reasons of exactly why Jesus raised him from the dead.  The Bible says that He did it "for the glory of God, that the Son of God may be glorified through it.”  I think He did it to show His authority and power over death and to fulfill the will of  the Father.  I suppose He did it for Mary and Martha.  He also did it so people would see and believe. But I wonder how much it was for Lazarus. I wonder if Lazarus would have preferred to be where he was or if he was happy to be alive again. It also says that Jesus was anguished and cried.  I'm not sure if He was crying because Lazarus had died or because He had to bring him back. You see, as much as I wish Jesus would heal Lenah so that others could see and believe.....and as much as I wish He would heal her for us...and of course that He would be glorified.... how much of it would be for her.  If He heals her liver so that we have her for more than a year, yet her heart is still compromised, how difficult will her life be?  I know that He is healing or has healed her NEC (necrotizing enterocolitis).  Her tummy is down to 34-35 cm (It had gotten up to 38.5 cm) and she has had normal poopies today. Our doctors were convinced that she would not likely survive the week when she first got sick on October 1st. I guess part of me believes that if it were His will for her to be completely and miraculously healed, He would have done it while she was in utero.  Do I believe that He could miraculously heal and regenerate all of her internal organs?  Absolutely, yes!  Do I believe it is His plan and will serve His purposes to heal her?  I believe it certainly could be, but I don't presume to know His will in this current situation. I am content  that however the next days and months go, His will will be done.

You should know that even if Lenah dies tonight, God has accomplished amazing things.  If it weren't for Him sustaining me, I would be curled up in my bed refusing to come out.  He has provided wonderful people to help support and sustain us during this time.  He has touched all of you reading and praying for us. He has used this situation to show me things about myself that I likely would not have seen any other way. We have met amazing people that otherwise we would never have met. Do I wish He could have done these things some other way?  Oh, yes! But I would say that about most of the painful lessons I have learned in life.  Sanctification and transformation are often painful. At least in my experience they have been.

   There are those that would say "How can you believe in and worship a God who would allow this to happen to your baby?"  How can I, the created, presume to know the whole story of the Creator.  All great stories have some components of suffering or tragedy.  All great stories have conflict and resolution.  Just because it seems we can't see how all this suffering- this conflict will be resolved, doesn't mean that it won't or that it is all for nothing.  Ultimately, I know that it will all have a final resolution. Our Creator will finish this story with an amazing and triumphant ending.  Our myopic view prevents us from seeing our suffering in view of eternity.  Our selfish, self-focused natural tendencies keep us from being able to look outside our personal circumstances. But I know with utmost certainty that He is writing a beautiful, glorious, epic story.  I pray that He will continue to remind me of this.

From Suffering to Glory  Romans 8:18-39 NKJV

¹⁸ For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. ¹⁹ For the earnest expectation of the creation eagerly waits for the revealing of the sons of God. ²⁰ For the creation was subjected to futility, not willingly, but because of Him who subjected it in hope; ²¹ because the creation itself also will be delivered from the bondage of corruption into the glorious liberty of the children of God. ²² For we know that the whole creation groans and labors with birth pangs together until now. ²³ Not only that, but we also who have the firstfruits of the Spirit, even we ourselves groan within ourselves, eagerly waiting for the adoption, the redemption of our body. ²⁴ For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? ²⁵ But if we hope for what we do not see, we eagerly wait for it with perseverance.
²⁶ Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us^[b] with groanings which cannot be uttered. ²⁷ Now He who searches the hearts knows what the mind of the Spirit is, because He makes intercession for the saints according to the will of God.
²⁸ And we know that all things work together for good to those who love God, to those who are the called according to His purpose. ²⁹ For whom He foreknew, He also predestined to be conformed to the image of His Son, that He might be the firstborn among many brethren. ³⁰ Moreover whom He predestined, these He also called; whom He called, these He also justified; and whom He justified, these He also glorified.

God’s Everlasting Love

³¹ What then shall we say to these things? If God is for us, who can be against us? ³² He who did not spare His own Son, but delivered Him up for us all, how shall He not with Him also freely give us all things? ³³ Who shall bring a charge against God’s elect? It is God who justifies. ³⁴ Who is he who condemns? It is Christ who died, and furthermore is also risen, who is even at the right hand of God, who also makes intercession for us. ³⁵ Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? ³⁶ As it is written:

“For Your sake we are killed all day long;
We are accounted as sheep for the slaughter.”^[c]

³⁷ Yet in all these things we are more than conquerors through Him who loved us. ³⁸ For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, ³⁹ nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Today Lenah is 40 days old.  She has had a good day today.  She had two normal looking poopy diapers.  Thanking God for poopy diapers may seem strange to some, but this is a pretty big deal. Her belly measurements have also gone down to 34-35 cm.  They had gotten up to 38.5 cm  She has been weaned again on her ventilator and they are talking about trying to get her off of it again in a couple of days.  That is kind of a scary proposition as she did not tolerate extubation very well the last time.  I am hoping and praying that she tolerates it better the next time.  She had her arterial line removed from her arm because it was leaking. Hopefully, they won't need to put in another one for a while.  They also stopped her pain medication today.  Her potassium was low, so they gave her a dose of potassium.

She was smiling in her sleep today. I almost caught it here.

Here is another for comparison.

Thank you for sharing in our journey and thank you for praying for Lenah.

Monday, October 21, 2013 Update

I arrived at the hospital around 11 am today.  Lenah was awake and alert.  They had to put Lenah on milrinone today as it seems her heart is not working as well as it was previously. This may be why she had such difficulty when they took her off of the ventilator.
 She looked comfortable and was not irritable.  Several times today she looked as though she was trying to talk to me.  She would open her mouth as newborns do when they coo at you and look at me so intently. So bittersweet.
  Her liver lab work  has continued to get worse. The ALT, AST, GGT, and bilirubin have continued to increase.
  Please continue to pray for all of us.

Sunday, October 20, 2013 Update

Today we took all the children to visit Lenah.  She was very stable and comfortable today.  When we arrived she was awake and alert.  She also had a poopy diaper that looked almost normal while we were there. It had just a tiny bit of what looked like blood.  This is soooo much better than yesterday. Here are some pictures from today:

 Yawning :)

Friday/Saturday Update October 19/20, 2013

The last 48 hours have been quite a blur.  I took the children with me to the hospital on Friday. The doctors planned to remove Lenah from the ventilator and they wanted me to be there.  Our friend Allison met us there as we all planned to visit Lenah and then go see the hospital's model train display and play at their playground. Wow. Things did not go as planned. Lenah did not do well at all.  She was struggling and looking like she was drowning. James arrived at the hospital at the worst of her struggle.  He thought we were losing here right then. They had to sedate her and put her on the CPAP machine to help her breathe and after a while she stabilized.  Sallie came to visit and stayed the night with me at the hospital.  She did well through the night on the CPAP.  This morning I was able to hold her again for the first time since September 27th. I was so happy. 

Later in the day they decided to remove the CPAP and try her on high flow nasal canula.

. 
She did well on that for a while, but then something was not right.  She started breathing too fast and her heart rate was too fast.  They put her back on the CPAP and it seemed to help,  so I went home to be with the family for bedtime.  On my way, home Lenah's nurse and doctor called me because she started to decline again. They asked my permission to re-intubate her.  I was close to home so I called James and we decided to call Allison and asked her if she could come be with the children.  We  headed to the hospital as her doctors were unsure if this decline was from something going very wrong with her intestines.  Her x-rays still look like she has not had a perforation or obstruction in her intestines.  We are all at a loss to explain why she was doing well and then just seemed to go downhill again.  I am so upset.  She was so happy and content being held today and to have another setback like this is just plain awful.  We plan to take the children to visit her again tomorrow as only Edward and Sofia were able to visit her on Friday because of her terrifying episode. Please continue to pray for Lenah.

Thursday, October 17, 2013 Update

Lenah is five weeks old today. Today she had visitors.  Her Grandad Jim, Aunt Michelle and Uncle Joe all came for a visit.  She got more kisses on her sweet little knee.  After they left, Lenah decided to wake up and stare at me for a long while.  She also decided that she likes her pacifier.  She would cry if it came out.

The not so good news is today she had blood in her stools again.  They did an x-ray and did not see any perforation or obstruction of her bowels. But they are still very concerned about her.  They plan to take her off of the ventilator tomorrow.  One of her doctors came by to talk to me about hospice care options for her.  She was so alert an engaged today.....it is so hard to think that she might not get over her intestinal issues.  Right now we are still on a day-to-day watch-and-wait basis.  It is all we can do.  Please continue to pray.

Wonder

I have posted this video previously to my facebook page.  When this song first came out in 1996 I would cry and belt this song out with her on the radio every time I heard it.  It touched me deeply every single time I heard it.  It still does.  Our dear friend Rachel posted this song back in August. She also said that she had been singing this song and praying for Lenah all weekend long.  Every time Lenah has overcome some episode this song comes to mind.  The same precious friend sent me this message back in May after out first fetal echocardiogram diagnosing her heart condition.:

Edie, 
"His grace is sufficient for me" is the verse that I've held on to for many years. I'd like to bring your attention to what God says right after that, "for My strength is made perfect in weakness." God has allowed your beautiful baby to be weak so that His strength will be perfected in your child and in you. Right after that Paul says, "Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me." Notice Paul said that the weakness and infirmity is allowed specifically so that THE POWER OF CHRIST WOULD REST UPON HIM. Edie, I believe that God is uniquely setting the stage for you and your child to receive a huge blessing. Through this weakness and infirmity, Almighty God's power is going to rest upon both you and your child. This infirmity is simply a door for Jesus' power to manifest. I believe it to be true. Hold on to that entire verse and you are going to see the manifestation of power from The Lord God in a way that only God can perform. Also remember, "He who has begun a good work in you will perform it." He began this magnificent life in you and He WILL bring it to completion. Edie, I know that you know the bible and that you already know the things that I have shared with you. I just also know that in times when we are in need, it is helpful to have encouragement from our brother's and sister's in Christ. I love you and I continue to pray for you and your family.
 Love, Rachel

I know that the Lord is doing an amazing thing in our lives right now. Some days it is hard to see this reality.  I don't know what Lenah's future holds, but I do know Who holds her future.  His ways don't make sense to our human understanding.
 
I really love this version of the song.  Enjoy.

Wednesday, October 16,2013 Post-Meeting Update.

  I am continually amazed at the goodness of the Lord.  It seems that once again Lenah has surprised her doctors.  They still believe that she has biliary atresia- that has not changed. But her bowels seem to be improving.  She has had two regular bowel movements today.  We were told today that NEC is kind of like getting a burn in the bowels. It can be minor, moderate, or severe like first, second, and third degree burns.  And the healing is similar in terms of level of damage and time of recovery.  At this time nothing surgical or otherwise needs to be done but to wait.  They are weaning her off of the ventilator and over the next few weeks will be watching and waiting to see if they can resume feeding her.  In the meantime, there is no rush to try to determine if she has BA or not.  I am still praying that she does not have it.
 We were told that if she has BA and does not have a successful Kasai or liver transplant we will have her with us for about a year until her liver fails and they will work towards getting her stable enough to come home and live out her time with us as a family.  Of course this is just an educated guess. And no one can determine the number of her days but the Lord.   It may seem that a year with our sweet baby is bad news to some, but when you have previously been told that your child will likely not survive the week, a year seems pretty great.  And again, we still don't conclusively know what is going on with all her internal organs.   I hope she and Jesus still have good surprises in store for us. A lot more was discussed during this meeting, but these are the key points of the conversation.
  I neglected to take her picture today as James took the children to visit Lenah instead of me and it slipped my mind with everything else going on.  I will be sure to get some good snapshots tomorrow.
Thank you for praying for all of us!

Wednesday, October 16, 2013 Update

  I didn't post last night because I was just too exhausted emotionally and physically to share where we are.  We are meeting at 3:30 today with the cardiac surgeon, GI surgeon, general surgeon, cardiologists, and the critical care team. Last night, I heard the words "comfort care" come out of our cardiologists mouth more times than I cared to hear.  I don't know what to expect from this meeting today. I don't think it will be good.  What I am reading in the faces of the staff on the CVICU floor tells me to not expect positive things from our meeting.  I will post later what conclusions everyone comes to.  I do expect that whatever decisions are made, God has the final say.  All of this is working out to bring glory to Him no matter the outcome.  He has carried all of us this far, and He will continue to carry us through.  Please continue to pray.

Monday, October 14, 2013 Update

Well, today was a quiet day for Lenah.  Not so much for me.  I had two difficult discussions today.  One with Lenah's cardiologist and the other with her GI doctor.  It seems we are back at the place we were before Lenah developed NEC and we thought we were going to lose her immediately.  They still suspect that Lenah has Biliary Atresia despite the changes in her liver labs.  Her intestines are still expanded with air, but have not perforated.  They think she has some kind of stricture.  They are thinking that they will need to do a colostomy, but do not know how extensive it will be.  Tomorrow she will have been on antibiotics for 14 days, so the next course of diagnosis and treatment will need to be sought.  Or we could just choose comfort care for her and they will not do anymore for her but keep her comfortable.  She can not live long term with non-functioning bowels and a possible non-functioning liver.  If they are going to have to do intestinal surgery to re-sect her intestines and fix any mal-rotation if present, they might as well do the liver biopsy and cholangiogram if possible at the same time.  At this point, without repairing her intestines her prognosis is not good.  Also, if her intestines are in bad condition, they may not be able to do the Kasai if she does indeed have BA.  So, if her intestines are not functioning well enough for the Kasai, she would just have to be treated with medication until she received a liver transplant IF they consider her "eligible" for liver transplant, which they may not because of her heart condition.  SO, here we are again.  I would love to walk in tomorrow and be told that her morning x-ray shows no sign of distention in her intestines and she looks well.  That would be amazing.  That would be a downright miracle.  They would still probably want to do the liver biopsy and cholangiogram to rule out BA, but at least her intestines might be well enough to do the Kasai if she needs it.  This is such a complicated situation.  For all of us.    At this point, I feel like we will never be "out of the woods" with Lenah.  With all of her issues, life will always be lived watching for the next situation to be managed.  I am not complaining, it is just so foreign to me, and at times I question if I am up to the task.  So, here we are once again, in need of wisdom and strength.  As we are every day.  Thank you for continuing to pray for Lenah and the rest of us.

 Today they removed her chest tubes.  They also reduced the flow on the ventilator.  All other things remained about the same today.

  Here is her daily picture:

Sunday, October 13, 2013 Update

  Today was mostly uneventful for Lenah.  When I arrived here today I noticed right away that she is retaining fluid.  At first glance, she looked like she had gained some cute baby fluff.  But that's not really possible in 24 hours. There are so many possible reasons for this.  All of her medication is the same as yesterday. They reduced the flow of her ventilator from 25 to 24. She has not had anymore fluid drain from around her lungs, but still has chest tubes in.  Her heart rate and oxygenation are good.  Her blood pressure is reading a little low on her art line, but reads fine when they use a blood pressure cuff.
  Last night when the doctors did night shift rounds there was discussion about the chylous fluid that filled her pleural space and where it had originated from.  The Dr. on shift said that he (like James) thought that it had come up from the abdomen.  We may never know.  He also remarked that it is puzzling how through the NEC and pleural effusion her heart has continued to remain steady and perform well.  I am so thankful that it has continued to do well.  Now, if we can just get all of her other organs and systems to behave..... 

Here are her pictures from tonight:

Saturday, October 12, 2013 Update

  Our little Lenah Bean is one month old today! Yay, Lenah!  Today she has been resting well.She had some lovely visitors this evening.  Her Grandad, Aunt Michelle, and Aunt Jamie came by to say hello and kiss her knee.  (it's the safest place to kiss her right now)  She tried to open her eyes and looked as though she was smiling several times.
  Her heart rate, blood pressure, and oxygenation, and temperature are all good.  She is still on the ventilator, but her rate has been decreased.    Her bilirubin count came back up some today, so they changed one of her antibiotics to one that is easier on the liver.  Her other liver labs are are elevated as well. She has everyone scratching their heads. Her chest tubes have not produced any more fluid.  They will probably be removed Monday morning. Her potassium was low today again and she received two doses of potassium.

Here is her picture today.  The light is pretty dim in here right now and I can't seem to get a good photo with the flash.  Her color is actually better in person than it looks in the picture.

   Happy First Month, Lenah!  Wishing you a much better second one!

Friday, October 11, 2013 Update

Today I spent most of my day with my older children. We went to the dairy in Santa Fe and traded our eggs for their good wholesome milk.  We also straightened the house a bit and then went to the park.  After the park, we went to meet Daddy (James) at work and then headed to the hospital for all of us to visit Lenah.

 Sarah at the park

 Joseph

 Sofia

Last night Lenah had another abdominal ultrasound.  Part of me is hesitant to make bold proclamations, but the rest of me wants to shout from the rooftops.  The radiology report said that Lenah's liver and gall bladder appear completely normal.  It also stated that the necrotizing entercolitis appears to be resolving.  I am in complete and utter amazement.  This past month has been such a roller coaster.  Now having a child with a severe heart defect has made me realize just how precious each day I have had with each of my children has been. But, oh, how many moments have I let slip by without proper thanks and recognition?  I try to set each moment I have with Lenah in my mind because I am so unsure of how long I will have her here with me.  The startling truth is the situation is same with my other children.  I have just taken them for granted.  All those moments.  Gone.  I should have been making an effort to catalog them all.  I know I can't live in regret of that, I just have to try to be more mindful of this truth from here on out.  All the moments are precious, even the difficult, monotonous, or irritating ones.  It doesn't seem that this will easy for me to remember all the time. But I will try.

Lenah's heart rate, blood pressure, and oxygenation have all been good.  She has been resting much more peacefully.  Her potassium was too low today so they gave her some extra.  Her urine output is good, Her temperature has been good.  She is on the same medications as yesterday.  She is still on the ventilator and at 25% oxygen (4% more than room air)  Her color continues to improve and her belly looks less distended.  Her chest tubes have not been producing anymore fluid.  Hopefully, she will get those taken off and we can get her off the ventilator soon.  The sooner she can start being fed again- the sooner she can start growing and getting well enough for the next step of her heart modification.  Hopefully, she will be able to come home sometime around Valentine's Day.  That would be rather fitting, I think.

Some pictures from tonight's visit

Thursday, October 10, 2013 Update

  Lenah is four weeks old today.  She seems to be doing much better today than yesterday.  Her overall color is better and she seems more peaceful.  She might be resting better because she received extra pain medication today when they put in a PICC line.  She did not seem to  have signs of infection in the fluid they removed from around her lungs. (We have not gotten the cultures back yet as they take time)  They are not really sure why the chyle fluid filled her pleural space. There are several possible causes.  Her bilirubin count and liver labs continue to improve even with the other issues going on. 
  Yesterday Edward made this adorable little hat for her.  He made it all by himself.  It took some trial and error, but he was able to figure it out without even using a pattern.

I am reluctant to share these photos as they are very difficult to look at even for me and I took them.  The first one was taken yesterday morning after they had put the chest tubes in to drain the fluid from her chest cavity.  Her eyes are open, but not because she was awake or aware.  She was heavily sedated with ketamine and her body wouldn't keep her eyes closed.  They put some eye moisturizing ointment in to keep her eyes from drying.

This picture is from this afternoon.

So, we continue to wait and to pray.  Her belly is still quite distended, but not as firm as it was.  Hopefully, she just needs time and prayer and she will get well.

Wednesday, October 9, 2013 Update

Lenah is most certainly not having a good day today.  This morning her lungs were severely compressed by fluid around them.  The fluid has been determined to be a fatty/lipid fluid.  It is likely produced because her bowels are not working well.  She also has a lot of air in her abdomen and intestine.  Her belly is very distended and she looks pretty awful,  The nurses said she looked much worse before they put the chest tubes in. Her heart rate, blood pressure, and oxygenation are currently stable and she is on pain and sedation medication.  They are having to put in a new arterial IV line as the one in her leg is failing.  They can still put fluid in it, but are unable to draw blood from it for lab work.  Right now we just have to wait and see what happens.  There is nothing definite to do at this moment except continue medication and see what her body does.  We won't know if there is infection going on until the lab work is done.  I will post as we get more information.

Urgent!

URGENT! Please pray. The hospital called. Lenah has fluid around her lungs. They are having to place chest tubes to drain the fluid so she can breathe and so they find out what kind of fluid is around her lungs. It could be from infection or it could be that her heart is failing. We don't know at this time. I will be leaving to go to the hospital as soon as I have someone to stay with children

Tuesday, October 8, 2013 Update

Look who was awake today:

She was very alert for a good 15 minutes even though she is on a very strong pain medication.
 Her heart surgeon came by to talk to me today.  He was very surprised that she is still here.  He said last Tuesday he was pretty sure she was finished.  What a difference a week makes.  The surgeons are still discussing whether or not they need to do a liver biopsy and cholangiogram to rule out biliary atresia.  Fortunately, they can't do anything until she recovers from the NEC.  Hopefully, her liver labs will be normal by then and we can just skip that whole discussion.  That is a road I am hoping to avoid traversing.
  Today her bilirubin was down to 5.7 from 6.5. She had to have another blood transfusion today. Her belly is still swollen and tender, but looks a little less "tight" to me today even though it is still measuring around the same.  Last night they removed her sutures from her chest and abdomen.  She has some areas that looked a little unhealed, so they put a special dressing on them and added another antibiotic to her IV. She is still on the ventilator. Her temperature, blood pressure, heart rate and oxygenation have all been within range.  Her calcium and potassium  are also within range. They increased her pain meds today.

Monday, October 7, 2013 Update

  Today when I arrived at the hospital Lenah's color still seems to be improving.  Her tummy still looks quite swollen, but not more than previously.  Her x-rays still show NO sign of perforation or obstruction.  Her heart rate, blood pressure and oxygenation are all still good.  They had reduced the flow rate on her ventilator yesterday, but had to increase it overnight. Her electrolytes are still in range.  Her red blood cell count is still okay.

 We had lovely visitors today. They were the pastors of our dear friends church. We had a nice visit and wonderful time of prayer. I have felt very encouraged since their visit.

  The cardiologist on rounds today came by to talk to me about the DNR order we had decided on last Tuesday and also about the biliary atresia question.  I explained to her that as things stand at this moment, if Lenah were to crash and the doctors on hand felt that it was because of something transient and recoverable from, we would would support their decision to resuscitate.  But if they didn't think there was a good chance of recovery, we don't want them to subject her to chest compressions and electric shock just to prove that all that could possibly be done for her was done.  I explained to her that we want the best possible outcome for Lenah, but not for our benefit.  We do not want her to suffer needlessly just so we can keep her here a little longer.  I also do not want to prevent any doctor from resuscitating her if they feel strongly that they should.   So she has kind of conditional DNR orders in her file.  I am so thankful that our doctors have taken the time to really listen to us and understand our feelings and position relating to our daughter's care.  I really don't know how they face having to have these hard discussions with parents on a daily basis.  I am thankful that our doctors have been both competent and compassionate.

 A couple of the GI doctors came by to talk to me today and they are far less sure of Lenah's possible biliary atresia.  The continual drop in bilirubin numbers, the fact that her stool has not turned pale, and her liver enzyme numbers are making them scratch their heads.  So right now they are content to wait and see how Lenah responds to the treatment of the NEC (necrotizing enterocolitis).  THIS IS HUGE.  It is now looking far less likely that Lenah has biliary atresia.  With Lenah's heart condition, the BA could be a death sentence.  Really, her heart condition alone is considered by many to be a death sentence.  But we know the Giver of life, and as of this moment He is not done granting life to her.  His praise will continue to be on my lips.

  Each day is a gift.  Hug your babies tight tonight, folks. (Even the big ones)  Just because it doesn't seem as though you are having to fight for their very lives, I realize that really you are.  We are waging a battle not against flesh and blood, but against principalities and powers that seek to steal, kill, and destroy.  Just because your children are not struggling to breathe or fighting infection, you are no less in a battle whether you realize it or not.  If you have been praying for Lenah fervently, you need to pray for your own babies just as fervently.  And know that the Lord is revealing this to me as I am to you.  As much as I have been praying for Lenah....I must do the same for my other children.  The war is just more physical and more apparent in her case.  The war is far more spiritual and hidden in theirs, but NO LESS REAL.