To read Lenah's story from the beginning, just go to the side bar under blog archive and start reading from May 2013.

Wednesday, November 27, 2013

Wednesday, November 27, 2013 Update

  Today we met with Lenah's doctors.  We will be taking her off of the ventilator on Friday.  I have no idea how she will respond to this. Regardless of the outcome, we will not be putting her back on the ventilator. Ever.
  Yesterday, Lenah had been moved to a semi-private room because they had a lot happen in the unit with other patients.  One of those patients needed the private room.  Today, they moved her back to a private room.  Room #7. Seven is my favorite number.  This room also has a western exposure and I have seen some amazing sunsets from across the unit through this window.  It is a good room.  Lenah was bathed in sunlight when we found her in her room after our meeting.  For the first time ever.  My heart grieves over this.
  Please forgive me. I am not ready to share today's photos.  I also am not ready for the coming days. I am, I think, ready to let Lenah go.  I just know the next few days are going to be the hardest of my life thus far.
  I finally looked online at infant caskets today.  Never thought I'd be googling that.

I hope you all have a wonderful Thanksgiving.

I will be thankful in His giving.

And as unbelievable as it may seem, I will be thankful in His taking away. And not because I feel obligated to.

Blessed be the Name of the Lord.

Tuesday, November 26, 2013

Tuesday, November 26, 2013

 Yesterday evening our sweet friends Joel and Rachel came to visit while Edward and I were at the hospital.  They very lovingly anointed Lenah with oil and prayed for her. After they left, Edward got to hold his precious sister once again.

She really loves being held.

Then today, Sofia and I went to visit Lenah.  Sofia was f.i.n.a.l.l.y. able to hold Lenah.  There has been a bit of sibling discordance over this issue. 

Lenah has been having quite a bit of nausea, gagging, and vomiting.  They had tried to start feeding her, but had to discontinue feedings as she was not tolerating them.  Her tummy is still quite swollen and seems to be making her uncomfortable. They have been weaning her off of the ventilator.  She can not go to hospice, home, or to a step down unit if she is on the ventilator.  If she can have the ventilator removed, we would be in a private room that we could actually sleep in and be with her all the time.  The children would be able to visit her more easily as well. At this time, I don't feel comfortable bringing her home to pass away.  If she were our only child, that would be different.  I'm just not sure how the children would handle that.

 Tomorrow at three in the afternoon James and I will be meeting with Lenah's doctors and caregivers to discuss her care plan. We still hope for a miracle. Please pray for Lenah and all of us.
Baby F will soon be going home to her Creator.  Please pray for her family.  I do not know Baby E's condition as I have not seen his parents, but he is still in the CVICU.  Also, please add another E to your list. She is 4 and is currently on a Berlin heart.  She was on the transplant list, but has had some setbacks and it is not certain if she is still eligible for a heart transplant.  Her parents have experienced the loss of a child previously. I can not even imagine. E's momma has been there constantly for her and loves her very much.  She has another child currently being cared for by her husband and family.  They live about 3 hours from Houston.  At least one other family-maybe two are saying their goodbyes as well.  I do not know these families as well as the ones previously mentioned.  But the Lord does, and he hears our cries for peace and mercy. Blessed be the Name of the Lord.

Monday, November 25, 2013

For this cold and rainy Monday.

I will be going to the hospital later today and will likely not post this evening.  A sweet sister posted this today.  It so ministered to me.  We will be having another family meeting with Lenah's doctors on Wednesday to discuss her palliative or comfort care plan. Please pray for us.

Saturday, November 23, 2013

Saturday, November 23, 2013 Update

  Today was sad but good.  We took all of the children to visit Lenah this evening.  Lenah looks like somebody told her the bad news.  Her coloring has worsened.  The children didn't seem to notice, thankfully.

 Sarah was so very excited to see her "Weenah".

Joseph was very excited to get to wear a doctor's mask.  And he still hopes that Lenah will get better.

 James was equally excited about his mask and he had to touch every bare part of Lenah. My Mr.Touchy-Feely.

   Our poor nurses struggled to not cry.  Those of you that know Edward, know that he is very protective of his brothers and sisters.  He also loves babies.  All babies.  But especially Lenah. Seeing him tenderly caress Lenah and grieve over her was almost too much to bear.

 Sofia was also very happy to see Lenah. She noticed that Lenah's nails need to be clipped.  She was afraid that Lenah might make a cut in her IV line.  I assured her that her nails were too soft to do that.

 Just as Sofia and I were about to go back downstairs to get Daddy for his turn to visit, Lenah started to wake up. James (Daddy) and Edward went up to see her.  She was VERY awake for them and just stared deeply into their eyes.  Edward said that when he looked in her eyes he knew that she was telling him "I love you".  I'm sure she was.

  After they had been upstairs for a bit, James came down and said to me, "You might want to come see her- she is REALLY awake"  I assured him that I have had plenty of wonderful awake times with her and that he should go enjoy her for as long as it lasted.  James said that she had looked at them very intensely and was very "there".  I'm so glad they had the opportunity to see her like that.  There is definitely something "other-worldly" about the way she stares into our eyes.  It is as though she sees everything about you.  She probably does.

Thank you for checking up on Lenah. And thank you for praying for all of us.

Friday, November 22, 2013

Biopsy Results- Friday, November 22,2013 Update

The biopsy results came in late this afternoon.  The fibrosis of her liver was between 3 and 4 on a scale of 1 to 4. She is not a candidate for the Kasai procedure.  Her liver is too damaged for the Kasai to have any chance of success. Usually, the Kasai must be performed by 45 days of age for a good outcome.  Lenah is 71 days old today.

  So here we are again.

 Lenah's heart has also been showing sign of loss of function over the last couple of weeks.  I haven't mentioned it because they have been kind of "expected" by her doctors as things they typically see between the Norwood and Glenn procedures.  This time period for all HLHS babies is a very precarious time period of managing heart function.  Lenah does not have the option of looking forward to the Glenn procedure to help improve her heart function. She has one wall of her heart that is not squeezing as well as previously.  She also has been having PACs which are not surprising to her doctors and are not particularly concerning at this point.  In addition, she has moderate leaking of her tricuspid valve
 It is most likely that Lenah's heart will fail before her liver fails.

 We could try listing Lenah for a heart/liver transplant.  We have decided that is not the right option for Lenah.  We do not believe it would be right to take two life saving organs from two other infants. The reality is that  heart transplant would extend Lenah's life for a maximum of ten years. Ten years of what.  Ten years of anti-rejection medicine and wondering if the next cold will leave her hospitalized or worse.  Yes, it could be ten glorious years of enjoying Lenah.  Or it could be ten more GLORIOUS years that she gets to enjoy paradise ahead the rest of us. I am more than okay with that aspect of losing her. In fact, a part of me is a bit envious.  Don't get me wrong, I'm in no hurry to leave my family here on earth, but I have quite a bit of joyous expectancy of the world to come.

 Lenah's doctors and nurses have all been very caring towards us.  I believe they are grieving with us.  More than a few have become like good friends to me.  There is still that barrier of professionalism that good nurses and doctors maintain.  But, as time goes on it seems that under other circumstances, there are people here that I could definitely see myself sharing coffee or dinner with or getting together for a play date with our children. 

At this time we are working towards getting a private room so there is more privacy for our family and friends to come and visit Lenah.  We are also hoping that we are able to wean Lenah off of the ventilator so it is easier for everyone to hold and cuddle Lenah.  We will be talking to the hospice coordinator on Monday to discuss our options for comfort care.

Thank you all for checking in on Lenah.  Thank you for caring and praying for all of us. 

Thursday, November 21, 2013

Nothing is Wasted- Thursday, November 21, 2013 Update

Today as I watched my mother holding my precious daughter, I though to myself:

 " She is so strong and beautiful and sweet.  It is just such a waste for this to happen."

Then the next moment I heard - in my thoughts:

"Nothing is wasted"

And I remembered this song:

When  I got home tonight, I watched it with James.  The lyrics are:

The hurt that broke your heart
And left you trembling in the dark
Feeling lost and alone
Will tell you hope's a lie
But what if every tear you cry
Will seed the ground where joy will grow

Nothing is wasted
Nothing is wasted
In the hands of our Redeemer
Nothing is wasted

It's from the deepest wounds
That beauty finds a place to bloom
And you will see before the end
That every broken piece is
Gathered in the heart of Jesus
And what's lost will be found again

Nothing is wasted
Nothing is wasted
In the hands of our Redeemer
Nothing is wasted

When hope is more than you can bear
And it's too hard to believe it could be true
And your strength fails you halfway there
You can lean on me and I'll believe for you
And in time you will believe it too

Nothing is wasted
Nothing is wasted
Sometimes we are waiting
In sorrow we have tasted
But joy will replace it
Nothing is wasted
In the hands of our Redeemer
Nothing is wasted

Yesterday, I kept thinking to myself. Hope is dangerous.  When I hope, I set myself up for disappointment.  And the pain seems so much greater when you have allowed yourself to hope.


The pain seems greater.
I think that is a lie.
I will refuse to refuse hope.
If I had refused to hope, the pain would have been the same, I would have just felt more justified in my hopelessness and disbelief.
I will hope.
It is pride that fears hope.  If I hope, and then that which I desire does not appear or transpire- I think I'll look like a fool.
That is where the refusal of hope is born, it is birthed out of fear and pride.
I will no longer gestate the refusal of hope.
I will hope.
If the desire of my heart, the cry of my heart, seems to fail to materialize- I WILL still hope. And pray.
AND realize that even if the objects or events I hope for are not seen here and now...
I have an eternal hope.
And our Lenah will share in that eternal hope.  Of that, I am certain.
Blessed assurance.

Romans 5: 1-5
Therefore, having been justified by faith, we have[a] peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

Lenah's Nana, my mother, was able to hold Lenah today.

She is still on the ventilator.  Our doctors have assured us that they will do everything possible to make our time with Lenah as enjoyable for her and for us as possible.  Lenah was very content to be held.  She was completely relaxed in Nana's arms.
 She did not have to have her intestines resectioned during her surgery.She just had some adhesions repaired. They opted to not put in a feeding tube because if the liver biopsy shows cirrhosis that is not very advanced and they decided to do the Kasai procedure, the opening where the g-tube come out would  add risk of complications.  She was started on a very small amount of continuous feeding of breast milk this evening. She is still receiving IV feeding as well.  We hope her intestines tolerate her feedings.  She will feel better if she is able to eat.

We will find out tomorrow how progressed the fibrosis of her liver is.

Thank you for checking in on Lenah and for praying.

Wednesday, November 20, 2013

Biliary Atresia

Friends, Lenah does have Biliary Atresia. Her gall bladder was filled with clear mucous and her bile ducts are non functioning.

Total gut punch.

I am still processing this. We will know later after the results of the liver biopsy, just how bad the cirrhosis of her liver is.
I will let you all know what our options are as soon as we know.
Her intestines were actually better than they expected to find them. I still haven't seen Lenah yet. They will call me when she is stable and back in the pod.
Thank you all for praying.

Surgery Update

Lenah was taken back to surgery around 2:45. They will be letting me know how things are going as surgery progresses.

Tuesday, November 19, 2013

Tuesday, November 19, 2013 Update

  Lenah had another good day today.  Her surgery will now be the first case of the day tomorrow unless someone else needs emergency surgery. So surgery is scheduled to begin somewhere around 9am. They will also be doing a liver biopsy tomorrow in addition to the cholangiogram, intestinal resection, and g-tube placement.  Tomorrow we will know conclusively if she has biliary atresia or not. I am believing that she does NOT have biliary atresia.  Please pray that all goes well during surgery tomorrow.  Baby F had some improvements today that surprised her doctors.  She is still not out of the woods.  She is still too unstable even for surgery to improve her situation.  Baby E is still hanging in there.  They are still in desperate need of prayer.  Lenah's pictures today did not turn out so well.  She looked much better in person than in the photos.

Thank you for checking in on Lenah.

Monday, November 18, 2013

Monday, November 18, 2013 Update

Lenah had a good day today.  She has been resting well.  Her abdominal surgery has been moved to Wednesday.  Since her surgery is kind of elective, she will be bumped if any emergency cases come in.  There is another case scheduled before her on Wednesday, so she will be the second case of the day, rather than having a set surgery time.  They have also decided that they will do a cholangiogram in addition to the intestinal surgery and g-tube placement.  As far as I know, they are not planning to do a liver biopsy.  They only mentioned the cholangiogram.  I am a bit nervous, but it will be good to know conclusively if she has any obstructions in her bile ducts, biliary atresia or preferably NONE OF THE ABOVE.

Here are today's liver labs (and the previous one for comparison.):

Mon 11/11                               Thur 11/14                            Mon 11/18
GGT  1132                                    887                                    909
AST   249                                     356                                    287
ALT  256                                      294                                    232
Conj Bili  7.6                               6.6                                       5.2
Unc Bili   1.9                                 1.9                                     1.2

I would like to see much lower GGT levels, but the decrease in bilirubin levels is very encouraging.  Lenah's weight was 8 pounds and 14.9 ounces as of last night.  Here she is today all swaddled in her blanket.
Please continue to pray for Baby F and Baby E. Thank you for praying for all of us.

Saturday, November 16, 2013

Saturday, November 16, 2013 Update

Today was a quiet day for Lenah.  All of her vital sign were good today.  She slept through my visit. They were able to reduce her milrinone from .5 to .25. All other meds stayed the same.  So, today was a good day.  Thank you for checking in on Lenah. Please continue to pray for her.  Please also remember Baby E and Baby F they are still in great need of prayer. I only have sleepy face pictures today.

Friday, November 15, 2013

Friday, November 15, 2013 Update

Well, today held some very good news and some not so good news. We learned from Lenah's upper GI study today that she DOES NOT have malrotation of the intestines.  This is wonderful news.  In children with heterotaxy syndrome, malrotation of the of the intestines is very common.  Malrotation of the intestines can cause long term difficulties.  If you are curious you can read about heterotaxy here.  The not so good news is that she does have an obstruction/stricture in her intestine.  The plan is to do surgery on Tuesday to resection her intestines and put in a G-tube for feeding after she heals.

 For those that are interested, here are her liver lab numbers:

Mon 11/11                               Thur 11/14
GGT  1132                                    887
AST   249                                     356
ALT  256                                      294
Conj Bili  7.6                               6.6
Unc Bili   1.9                                 1.9

I am very curious to see how they change next Monday.

Her weight is now up to 8lbs and 9.6 ounces.  At birth she was 7lbs 3 oz, but her weight had dropped down to 6 lbs even at one point.  Her length at birth was 46cm (18.1 in.) and now she is 51cm
(20.07 in)

She was awake when I arrived today.  She looked like she was trying to talk again today.  When she yawned, her airway opened enough for her to make some noise (vocalization) when she exhaled and it startled her some. It startled me, too.    After the first time she was extubated, they found that her vocal cords were paralyzed on one side.  It was reassuring to hear her make a vocal sound today.


Thursday, November 14, 2013

Thursday, November 14, 2013 Update

  Today my mother went to visit Lenah in my place.  My throat was scratchy this morning and as the boys have had a cough for the past week, I decided it was best to forgo my visit until I was sure that I was not coming down with something.
 Lenah had her upper GI study today.  At 4:30pm the contrast had passed the duodenum and was somewhere in the jejunum.  I spoke to her nurse this evening and he did not have the final report of their findings.  I will find out in the morning what they found.  I also found out today that her bilirubin (both conjugated and unconjugated) and GGT counts have gone down from Monday's labs. This is very encouraging.  Her GGT was over 1100 on Monday (an all-time high) and that had me very concerned.  Today it was just over 800.  I did not write down the bili numbers, but they are down.  Hopefully, Monday's labs will be even better.  She had an echocardiogram today and the squeeze of her heart is good, but she has a mild leak of the tricuspid valve.  They are not concerned about it at this time, but are watching it.
  Please continue to pray for her.  Please pray that her liver and intestines continue to get better and that her tricuspid valve stops leaking.  God healed her pulmonary valve while she was in utero.  I know He can fix her tricuspid valve as well.

Wednesday, November 13, 2013

GI Procedure Results

Lenah's doctor just came by. Everything looked normal in her lower intestinal tract. So, now they will have to do an upper GI study to determine if she has a narrowing/stricture there.

GI Procedure Update

Lenah did well during her procedure. She is sleeping soundly now. We should have results by the end of the day. Thank you for praying for her today. Please pray for wisdom for her doctors as they make decisions about how to proceed.

Tuesday, November 12, 2013

Tuesday, November 12, 2013 Update

Today Lenah is 2 months old! Happy Birthday Lenah! And........look who got to wear REAL baby clothes today.

She seems to really like wearing clothes. The nurses said that some babies get very irritated by having clothes put on for the first time.  She looks very comfortable.  She is also more jaundiced today. She has been less fussy today when she was being changed or repositioned. She is scheduled for her lower GI study at 10:30 tomorrow morning.  Please pray that she has no adverse reactions to the contrast.  Also, please pray that they can see everything clearly to make the best decisions for her treatment.

 And here is a new video from today:

Thank you for checking in on Lenah!

Monday, November 11, 2013

Monday, November 11, 2013 Update

Lenah decided to sleep through my entire visit this evening.  She even refused to open her eyes as I changed her poopy diaper.  She cried, but did not wake up.  There was no blood in the diaper I changed.  They still intend to do her lower GI study on Wednesday. She has been doing well overall today.  The only changes today were that her oxygenation to her brain was quite a bit higher today than it has been.  Especially when she lays on her left side.
  I did not see Baby E's parents today and do not know his current status.  Baby F continues to need our prayers. 

Sunday, November 10, 2013

Sunday, November 10, 2013 Update

  Today was James' and Joseph's 7th birthday.  We have been celebrating since Thursday night.  It seems like we have birth week not birth day celebrations around here.  James and Joseph were EXTREMELY happy to each receive tablet computer from their Grandad and Aunt Michelle.  They are just thrilled.  We all wished that Lenah could have been with us to celebrate.  Maybe next year.  We did not take the children to visit Lenah this weekend as James and Edward have a cough and we are not sure if it is due to allergies or a cold.  We are not taking any chances.

 The birthday boys

  I went to visit Lenah this evening.  She had just gotten her bath and was alert and awake.  I gave her a massage.  She seemed to enjoy it.  She had a good day today according to her nurses. We should have more answers to her health questions by the end of the week.  At this time, they still plan to do her lower GI study on Wednesday.  They will also be doing liver lab work later in the week.  I am hoping to see improvement after being on the Omegaven.
  Lenah's baby neighbors are still struggling.  Please continue to pray for them.

This one is blurry, but to Lenah's left you can see the cute little puppy pacifier holder (Wubbanub) that our sweet friend Kelly sent to Lenah. Thank you, Kelly!

Can you see her increased "plumpiness" ? Her legs are no longer birdlike. Growing is good!

Thank you for checking in on Lenah.  We hope you had a wonderful weekend. Thank you for praying for Lenah and all of us.

Saturday, November 9, 2013

Saturday, November 9, 2013 Update

 We were unable to go to the hospital today.  We had to catch around 80 ducks this morning to sell.  We also took the older children to the library.  Tomorrow is the twins 7th birthday and we had to do some preparations for that.  We called Lenah's nurse in the morning and she was resting well.

We called her nurse this evening and today was much the same as yesterday for Lenah.  I am not sure if they still plan to try to do her lower GI on Wednesday or if they are going to push it back again due to the bloody stools.  Lenah's belly is less bloated today and measures only 37 cm.  She is regulating her own body temperature well and they were able to turn off the overhead warmer.  She is enjoying being swaddled. I miss not being able to visit her today, but will definitely visit her tomorrow evening after the boys birthday party.  I do not have a picture from today so I will post some of my favorites from the past.

 These are from before her first open heart surgery.

This one is from October 8th.

Thanks for checking in and for praying for Lenah.

Friday, November 8, 2013

Friday, November 8, 2013 Update

Today is my younger brother Eric's birthday.  Happy birthday, Eric!

 Lenah did well overall today, but she did once again have blood in her stools.  It seems as though breathing on her own is just too much for her with her current level of heart function.  Having to use her diaphragm and breathe on her own takes blood supply from her intestines and makes them unwell.  I'm sure there will need to be further discussion on whether she needs to wait until after her next open heart surgery before they do intestinal surgery. Also, we still have to see if her liver improves over the next several weeks after being on the Omegaven.  It is pretty clear, though, that it would likely be very difficult if not impossible for her intestines to work properly with the current blood supply offered to them.   They also had to give Lenah a blood transfusion yesterday.
 Today, James and I went together in the evening to visit Lenah.  I was unable to go visit her earlier in the day as my mother is out of town and my friend and her family are having cold symptoms. It worked out well, though.  Sarah has been missing me and has been clingy when I leave to hospital for the last couple of days.  She needed some extra snuggle time. Our baby friends are continuing to have difficulties.  Please continue to pray for them as you continue to pray for Lenah.  Thank you for checking in on us.