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

Sunday, December 29, 2013


 As we shared with you all previously, Lenah passed into glory this morning.  It may seem very sudden, but she was interred into our newly created  family cemetery this evening at sunset.  James and I, our older children, my parents, and our friends, the House family were present at her burial.

 Any of you that know us in real life know that we do many things differently than is considered normal or customary.  We researched even before Lenah's birth the laws concerning burial in the state of Texas.  We learned that we could create our own family cemetery on my parents farmland.  We also learned that we could transport and bury her ourselves but that it would have to be done within 24 hours of death or she would have to be refrigerated or embalmed if we desired to delay burial.  It seemed that the most difficult obstacle would have been if she had died at the hospital and would have had to be transported postmortem.  Thankfully, that was avoided.  Today was both awful and wonderful. It was such a blessing to have a funeral without all of the customary requirements.  We just spent the day preparing her gravesite and getting ready as a family for her funeral.  James hand dug the grave. It was a labor of love.  Robin (our hospice nurse) and I removed her picc line. She was finally free and untethered.  For the first time, I was able to look at her head to toe.  She had no birthmarks or storkbites.  I had never really ever been able to look her over thoroughly as she could not comfortably be turned on her tummy while living because her abdomen was swollen and it made it difficult for her to breathe.  I redressed her and gave all the children a final chance to hold her.

  I'd like to publicly thank our kind and caring neighbors Mr. Jimmy Decker and Mr. Charlie Janner for building her lovely casket.  It was beautiful.

The Child Life specialists at Texas Children's Hospital gave us these lovely two-piece keepsake necklaces for the children.  They put the small heart in the casket with Lenah and kept the outside heart for themselves.

 They also went out to Nana's antique rose bush and picked roses to place in her casket with her. I placed a blanket that had been mine when I was a baby to line the bottom and a cuddly neck pillow (given by my dear friend Allison for me to use when I spent nights at the hospital) as a cushion for her.  We also placed some of the stuffed animals given to her during her hospital stay.
Please scroll on by if you prefer to not see her postmortem, but I think she is too beautiful to not share.

I hated closing that casket. For me, I think this was the hardest moment of the day.

Sofia found these roses on Nana's rosebush.  One cluster has five roses in full bloom representing Edward, Sofia, James, Joseph, and Sarah.  The other cluster has two in full bloom and one tiny bud  representing James, me, and Lenah. We also planted two rose cuttings next to the temporary marker my father made for Lenah

The sun had set by the time we finished praying and closing the grave.  I will take some more pictures of the site tomorrow.  The cemetery looks quite rustic currently.  We plan to do some fencing and landscaping in the coming days.

We had no idea that the surveyor who surveyed the land to be dedicated as a family cemetery is actually a nearby neighbor.  He happened by today as the grave was being opened.  He stopped and visited with James and Papa.  He generously offered to come back to do the measuring to plot the gravesite for our records.  What a blessing.

After the funeral, we all went to town for dinner.  After dinner, we stopped at the store to get some artificial flowers to decorate the grave tomorrow.  When I was standing at the checkout, I thought I recognized one of the men behind me in line. I did.  It was a dear brother in Christ that we had not seen in years.  Talk about a divine appointment.  I have no idea what the coming days hold for us, but I am amazed at all of the "strange" occurrences we have experienced over the last year.  I just hope I can remember them all long enough to share them here.  We have most assuredly known the leading and the comfort of the Lord throughout this last year. It has been a long, hard year.  In many ways, I am glad for it to be over.  I am most certainly not glad to have lost Lenah.  I had really hoped that she could be made well - by either earthly or Divine means- but it was not to be. I am most certain that she is not lost to us forever. We will see her again. We will see her as she truly is- not veiled by the brokenness of this world.  I look forward to that day.

 I also sense a "change in the winds" for our lives.  I am expectantly looking forward to the coming days.

Once again- and I mean it ever so sincerely- thank you for praying for us.  The prayers of the saints have been perceptible to us throughout this journey.  Thank you and we love you. 

Sweet Lenah

At 10:57 this morning,  Lenah Olivia Wray passed peacefully from her earthly father's arms to her Heavenly Father's arms. She was 3 months, 2 weeks, and 3 days old.

We will miss her like crazy.

Please pray for us.

Saturday, December 28, 2013

Saturday, December 28, 2013

We thought last night was Lenah's last.  She had a long episode of taking 7 or 8 breaths and then not breathing at all for 7 or 8 seconds.  At one point she didn't breathe for about 20 seconds.  She was also limp and completely unresponsive even to having her feet tickled. She improved drastically after we asked you all to pray for us.  Her her rate was very fast during this episode and is still higher than her normal heart rate.  She is very weak and her pulse is weaker in her extremities than before. Her breathing is also more shallow and coarse.
  I have mixed emotions after this very scary episode.  I am thankful that we have more time with her, but it is also hard to bear the waiting.  I am content to have her with us as long as possible as long as she is not suffering.  I guess even if she has to suffer in some way or another I will be content to be by her side or hold her as long as she is here.
  It seems as though there has been a lot of loss all around us this year.  I will be glad to close the doors on 2013. I hope and pray that next year holds less loss and grief.
  Thank you all for praying.  Thank you for loving us.

Please pray

Please pray for us. Lenah is having lots of episodes of stopping breathing. She is not struggling though. Praise God.

Sunday, December 22, 2013

Sunday, December 22, 2013 Update

  The last few days have been pretty rough for Lenah.  She has has a lot of nasal congestion and coughing.  I have been unable to leave her by herself  as she has coughing episodes where I have to use a suction machine to catch the secretions because she chokes otherwise. Saturday was a bit better than Friday and today seems better than yesterday.  I am hoping that Friday was the climax of the episode and she will continue to get better.  I am not sure if this has been the result of a cold or if it is heart related.  She also seems as though her ribs are very sore.  I imagine they must be after so much coughing. Poor baby.  Because she is so young there is nothing in the way of cold medication that I can give her to relieve congestion and cough.  I put a bit of mentholated rub on her chest and used saline spray for her nose and that seemed to help a bit.   Last night was especially difficult because she would only sleep if being held.  I had to wake James in the middle of the night to take over as I was exhausted and afraid I might drop her or something.  Then, at five am her pain medicine pump ran out even though it said it had 5 doses left.  I had to change the bag of medicine and reset the pump for the first time by myself.  That was a bit of a challenge as I was bleary-eyed and foggy-brained. Thankfully, I managed to figure it out.  Today I am trying to nap as Lenah does to get some rest.  It is hard to do as the older children still need and want my attention as well.  I am so grateful that Nana is here to make meals, mediate the children's squabbles, and all the other things that need to be done. James has to go back to Houston for a couple of days to take care of some things, but will be back on Tuesday or Wednesday and should be here through the new year.
  I checked Lenah's heart rate earlier and it is a bit slower than her normal. It is normally over 100 while she is sleeping and between 120-140 wile awake.  It was 89-99 while she was sleeping. I will check it again later to see if is staying consistently slower.  Her oxygenation is staying in her good range with her on 1 liter of oxygen.
  Edward (Lenah's oldest brother) turned 12 on Wednesday.  I am so thankful that the Lord has allowed Lenah to stay with us through all of the children's birthdays this year. It may seem silly, but I found myself kind of holding my breath on Wednesday and praying that Edward's birthday would not be "the day".
As a family, we do not celebrate Christmas.  We made the decision after research and prayer many years ago and determined that it was not a holiday that we would keep as others do.  We make no judgements against anyone else's celebration- we just do not keep observance of Christmas ourselves. After learning some of the origins of Christmas and in reading Romans 14 , we felt that we were free from keeping Christmas. It has been liberating to not feel the pressure of doing all the things that we used to feel were required this time of year.  My birthday is on the 26th, and I have no concern about whether the Lord takes Lenah on my birthday.  It will be no more difficult for me that day than any other day.  The 26th will also be our 15th wedding anniversary.  I had hoped that we could do something special for our aniversary this year, but I guess that will have to wait.
Thank you for checking on Lenah.  And thank you for praying for all of us at this time.

Monday, December 16, 2013

Monday, December 16, 2013 Update

 I have tried several times over the last few days to get a post together.  I have also tried to upload a video to share, but the satellite internet here is quite slow.  Lenah had a rough night Saturday, but has been better since then. Today we were able to take Lenah out for a nature walk.  She seemed to really enjoy it.  She was wide-eyed and taking everything in.
  Her picc line has been working very well since we started using heparin flushes with every TPN change.
 The children have enjoyed having her at home.  I think she has also enjoyed being at home. It was very nice to have Daddy here with us this weekend.  He will be able to be here with us for two solid weeks starting Friday night or Saturday morning.  We will have a friend staying at our house to take care of our animals while he is here. I haven't taken very many pictures in the last few days.  It seems as though my hands are full with Lenah or I am doing some other needed task.  I forget to grab the camera and capture the moments we are sharing.  Sometimes, I just try to make a mental note of something the children say or do and commit it to memory.
 The weather should be very nice for the next couple of days.  I will try to get some good outdoor pictures to share with you all.  For our friends and family who have tried to contact me by my cell phone, I do not get good reception here. I have to go outside to a particular spot to send texts or make calls. If you need to get in touch with me, you can call James for the number here at the farmhouse or send me an e-mail.  I am very behind on checking e-mail, though, and it might be a few days for a response.
  Nana has had  a cough and congestion for a couple of days and we are praying that
Lenah does not get it. Thank you for checking in on Lenah and for praying for all of us.

Wednesday, December 11, 2013

Wednesday, December 11, 2013 Update

Tuesday proved to be another eventful day.  Lenah's one good line became occluded when we changed her TPN at her 2:00 hospice visit.  Sooooo, we loaded everyone up and headed to Houston. We met Daddy at our sweet friend Shannon's house so Nana wouldn't have to drive in downtown traffic.  The kids were very excited to visit with our friends as they had not seen them in quite a while.  Nana visited for a bit and then headed to Texas City to hang out while we took Lenah to Texas Children's Hospital.  We arrived at the hospital around 8pm.  Once again we had very wonderful caregivers.  They were able to open Lenah's red line but not the white one.
  At around 2 am, once it was determined that we could not get the white port open with out it being cleared by a wire, we had to make a decision.  We could either be admitted and have the line treated by wire sometime during the next day or go home with just one line.  We opted to go home with the one open line.  We learned that her lines should have been flushed at least once a day with a heparin flush to keep them open.  The TPN is particularly bad about causing clots.  Our hospice nurse took a representative heparin flush with her today to know exactly what we will be needing.  Lenah's particular situation is kind of uncharted waters.  First of all, her condition is pretty rare, and then most babies with similar situations pass away at the hospital after all interventions have been attempted.  So, hospice care for an infant on complete IV nutrition with all of Lenah's congenital problems is even more rare and has been a learning process for all involved.
  Lenah will be 3 months old tomorrow.  She currently weighs 10 lbs and 12 ounces.  How she continues to grow, despite her condition, amazes me. She is such a trooper. She has been very content today and has not needed very much pain medicine- just enough to prevent withdrawal symptoms.  Lenah was on very strong sedation and pain medication while she was in the hospital so we now have to be careful to give her a dose periodically to prevent withdrawal symptoms.
  Lenah had her first shower today. She loved it.  We covered her right leg and picc line with a plastic bag.  Previously, she has only had sponge bath type baths only- which she really didn't like very much at all.  She loved being shower with the hand shower.  She has been resting peacefully since her shower time.  AND she smells amazing.  I can't get enough.

Sunday, December 8, 2013

Sunday, December 8, 2013 Update

 Well, we had a bit of an exciting night last night.  On Friday, one of the lumens or ports on Lenah's picc iv line stopped working.  So, whenever I needed to give Lenah a dose of medication, I would have to detach and re-attach her TPN fluid.  Last night, a while after midnight, the other lumen stopped working as well.  So we had to take Lenah to the ER in Nacogdoches to see if someone could get her line to work again.
  Our triage person  (I'm not sure of his actual title or designation) was extremely kind to us.  I was afraid that once we arrived people would freak out at Lenah's appearance and vital signs. We arrived there about 2:45 in the morning  and there were no other people in the ER.  We were pleasantly surprised at this. We got back to the farmhouse a bit before 5am.  I am so thankful that James had taken a long nap in the afternoon before this all happened. He was alert driving us there and back.  I, on the other hand was brain numb from lack of sleep. Lenah woke up while we were there and showed her sweet little personality. They were able to get Lenah's line going again, but we will probably have to take Lenah back to Houston to TCH to have a new line put in.  James called and spoke to one of Lenah's doctors and we were told that they would start the process Monday morning of trying to get her scheduled for a new picc line.  Lenah must have a good long term line as she is not able to take anything by mouth because her digestive system does not work well due to low blood/oxygen supply.  She has to have IV fluids/nutrition and medications all the time.  Her line had been acting up before we left Houston and was re-worked on Monday.
  Lord willing, James will probably drive back Wednesday night.  Then, he and I will drive Lenah to Houston early Thursday morning.  Hopefully, I will be comfortable with changing Lenah's IV fluids by then as we will be gone all day and she will need her TPN replaced at some point during the day.
  She has been breathing well and her heart rate and oxygenation have been within her proper range.  Today, though, she has seemed out of sorts and cries easily.  She just seems like she is feeling unwell.
  James headed back home this evening and Papa will drive to Houston in the morning.  Please pray for us as the children have seemed restless and are acting out a bit.  I'm sure they are feeling the stress of the situation as we are.  They are all aware that Lenah is very ill and that she is dying.  We have been given quite a few books and resources for explaining things to them and the hospice social worker has resources for us if we need them.

Saturday, December 7, 2013

Saturday, December 7, 2013 Update

  We arrived safe and sound here at the farmhouse Thursday night around 6:45. Our transport team was very kind and helpful. Lenah slept peacefully all the way here. The transport driver put together Lenah's pack and play for us. He told me that he doesn't yet have children, but that he wants to have children. I'm sure he will be a great dad someday. Papa had been looking at the instructions before we arrived , but I think it may have been hard to concentrate under the circumstances. I was completely unable to concentrate on putting it together as Lenah had started crying a little after we arrived and needed comforting. I was very thankful for the assistance.

The hospice personnel arrived a little while after we did. They were very compassionate and caring. There was a lot of paperwork to be completed. There were some details about what kind of IV fluid/nutrition she would be receiving here that were not what we were expecting. Thankfully, that was remedied Friday. We had to have special approval for the TPN. Also, one of our doctors at Texas Children's was extremely helpful in this process. The hospice coordinator commented that he he was very personable and had given direct contact information to her in case we needed any additional information and that she was somewhat surprised by that.

  I am thankful that we have had very caring people taking care of us at every juncture of this journey. They have helped make the this terrible situation bearable.

  I have to also tell you about another wonderful blessing we experienced during the last few days and the incredible timing of the Lord. James has been needing to replace our '97 Honda Civic for awhile now. I can't believe it is still making it on down the road. He had been researching gas efficient vehicles for commuting to work. Back when I was seven or eight months pregnant I had looked into buying a Toyota Sienna or something like it that would be able to be parked in hospital garage parking. The Sprinter van I drive is too tall to fit in any parking garage. I found out that there is an open parking lot across the street from the Pavillon for women at Texas children's hospital, so I did not need to find a replacement vehicle. During my looking at Toyota Sienna's I met a very kind salesman that very sincerely told me that he would be willing to help us find the best priced vehicle for our needs. On Wednesday morning when James and I spoke in the morning he said that he needed to find a new vehicle if he was going to have to drive to the farmhouse every weekend. I fished that salesman's card out of my wallet and gave James his contact information. James went to see him at lunchtime and by the time he got off of work, he had a brand new Toyota Prius at an amazing less-than-invoice price. Thursday afternoon I followed the medical transport ambulance in the Prius to the farmhouse. James brought the children up Friday night in the Sprinter van. Everything just fell into place perfectly. I am very thankful for these practical blessings we have received.

Wednesday, December 4, 2013

Wednesday. December 4, 2013 Update

  Our current plans are to have Lenah brought by medical transport to my parents farmhouse in east Texas tomorrow.  I will go home this evening to finish packing everyone up. Please pray as there have been some slight difficulties with home health/home hospice administering certain medications to Lenah by IV instead of by mouth.  One of our doctors is advocating for us right now to try to get the best possible care for Lenah once we get her "home".  There are some questions as to exactly what insurance will and will not cover.   It seems as though certain things can only be done in a facility.  Going to a hospice facility would really be no different for us than being here in the hospital.  We need to be someplace where our children have free access to Lenah in a comfortable setting-  somewhere they can go outside and play for a bit and then come give her a kiss or a snuggle and then be on their way.  We need to be able to make our own meals and relax while we enjoy our last days with Lenah- however many we may have. 
  I am more than ready to take her home.  Tomorrow will hopefully be her last day in the hospital and her first day to ever be outside.

This was the last photo taken before Lenah was removed from the ventilator.
This was the next photo taken
 First bath by momma.

 Grandad Wray
Nana Copeland
Aunt Michelle
Grandad and Aunt Michelle

Sunday, December 1, 2013

Sunday, December 1, 2013 Update

  I know there are many of you that have been anxiously awaiting to know Lenah's status. I'm sorry, but I have been soaking up every precious moment with her. Also, I do not have my laptop here at the hospital with me currently. I will have to share all the wonderful photos with you all later, as they are trapped in  my camera for the moment. I am using James' laptop right now and am very unfamiliar with it but here are a couple of photos from this very moment.

  Sometimes, the Lord gives, and He gives, and He gives, before He takes away.  Lenah did miraculously well with having the ventilator removed.  She is still very sick, but she has decided to stick around for a while longer.  She is being weaned off of the milrinone that helps the squeeze of her heart.  She is also being weaned off of her sedation.  She is amazingly content.  She cries when she has gas or tummy pain and sometimes when she has a coughing or vomiting episode. And like all babies, she gets fussy when she gets tired.  I have stayed here at the hospital with her since she was taken off of the ventilator on Friday.  Our caregivers have been so very kind and accommodating to us.  We are ever so grateful. There have been some really amazing moments over the last couple of days, and I look forward to sharing them with you. I have been jotting down notes and trying to not miss anything.  I will likely not be posting much as I am still here at the hospital and have full access to love and cuddle Lenah.  We will be trying to get moved down to the 15th floor and then possibly to hospice or home.  We have not made any decisions about that yet and are taking things moment by moment for now. 
  Thank you for checking up on Lenah and thank you for continuing to pray for all of us. 

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.