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.
Wednesday, November 27, 2013
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.
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.
Sunday, November 24, 2013
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.
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.
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
(chorus)
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
(chorus)
Nothing is wasted
Nothing is wasted
In the hands of our Redeemer
Nothing is wasted
(Bridge)
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
(chorus)
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.
Seems.
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, 2 through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. 3 And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; 4 and perseverance, character; and character, hope. 5 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.
" 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
(chorus)
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
(chorus)
Nothing is wasted
Nothing is wasted
In the hands of our Redeemer
Nothing is wasted
(Bridge)
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
(chorus)
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.
Seems.
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, 2 through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. 3 And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; 4 and perseverance, character; and character, hope. 5 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.
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