Monday, September 30, 2013 Update

Today was another hard day. One of the cardiologists came to talk to me today and let me know that this morning there was a discussion between the cardiology team and the GI team about Lenah's case and there is concern about how to proceed with diagnosing and treating her liver issues.  It is highly likely that she has biliary atresia.  You can learn about it here. I guess I hadn't allowed myself the whole "if, then" discussion in my own head of how would things go if there were complications with the procedure and or treatment (Kasai procedure).  They were originally going to take her in to the OR Thursday  to perform a liver biopsy and cholangiogram under general anesthesia and if they did diagnose biliary atresia they would then perform the Kasai procedure at the same time.  There was discussion that being under anesthesia for so long might be difficult for her to recover from because of her heart condition.  So if she couldn't recover heart-wise she would have to be put on ECMO.  The other big "if-then" is if she does have biliary atresia and they do the Kasai and it fails and she needs immediate liver transplant.......will she even be considered a candidate for liver transplant because of her heart condition OR will they then try to list her for heart and liver transplant at the same time.  I honestly had never even considered the possibility that they would not do liver transplant because of her heart condition.  I feel like I am back at square one.  She has done so well recovering from her open heart surgery and now this.  I am distraught to say the least.  We are once again in desperate need of prayer.  We need wisdom for Lenah's doctors and for us.  Healing for Lenah.  Peace for us.

Weekend Update Sunday, September 29, 2013

 Yesterday, James and I took the children to a birthday party and then we all went to the hospital to visit Lenah. They all enjoyed visiting her.  Here are a couple of pics.

Then tonight Edward and I went for a visit.  Guess who had NO NASAL CANULA?

Edward got to hold her the whole time we were there.  He was a very happy big brother.
Overall, she is doing very well.  I plan to spend a long visit with her tomorrow.  I will be with the older children during the morning.  After lunch, Sarah will be spending time with Nana and the older children are going with their aunt Michelle to see Cloudy with a Chance of Meatballs 2.  Everyone is very excited. I am very thankful for a peaceful and restful weekend.

Friday Night, September 27, 2013

Guess whose momma got to hold her when she came to visit?

This girl's!

I was so happy to find that Lenah was off of the CPAP and on a high flow nasal canula.  They had also removed her femoral line.  The nurses said she had been fussy earlier (I think she missed her momma) and her O2 levels had gone down and they were concerned that they might have to put her back on the CPAP.  She also had not made poopy since the formula change and were planning to give her a glycerin suppository (NO FUN!).  BUT, momma finally showed up around 11PM and when I checked her diaper it was very messy.  So, no suppository!  YAY!
  I can't not even begin to tell you how good it was to be able to hold my baby.  She slept so soundly in my arms and her oxygen stayed in the high end of her range the whole time.  I really did not want to leave her. About half-way through my visit she needed to be weighed and have her bed changed, so I ran to get my camera and she decided to wake up and pose for me.  What a good baby!
  I know somebody prayed that I'd get to hold my baby very soon.  Thank you.  He hears.
  We plan to take the children to the hospital tomorrow to visit Lenah.  Please pray that they will all have a positive experience.  The hospital can be a scary place at times.

This picture was taken while she was being weighed.  She is jaundiced as you can see.  Her incisions are healing very well.

Friday, September 27, 2013 Update

Today I have spent the day with my older children.  Two were in desperate need of haircuts and we needed to get a gift for their friend's birthday tomorrow.  We have had a nice day together running errands.  After we have dinner together, I will be heading up to the hospital to spend time with Lenah and will post an update later on tonight.  It has been hard to be away from her so long today, but I trust that she is being well taken care of.  I will likely stay tonight until they do her sponge bath and change her bedding and will try to get some pictures with less of her "equipment" all over her.  I did call her nurse this morning and learned that her bilirubin has continued to increase and she had to have her pregestimil feeding turned off for a bit because she had several episodes of spitting up. Hopefully, her feeding issues will have improved throughout the day.  Her electrolytes were better today as well.  Thank you all for continuing to pray for her.

Thursday, September 26, 2013

Lenah is two weeks old today!

Lenah had a rough morning.  Her calcium was too low and her phosphorus was too high.  We're still not sure why her electrolytes are not staying balanced. I arrived here at the hospital at 2PM. She was better as the day went on and has had a peaceful day all the time that I have been here. For today:
- her heart rate has been good
- blood pressure good
-Oxygen levels good
- respiration good
- bilirubin up from 11.3 to 11.4
- slightly lighter stool, then slightly darker
- feeds increased to 16ml/hour (full feeds)
- IV feeding stopped
- switched from donor milk to pregestimil
- performed her two week newborn screen

 She is scheduled for next Thursday at 3pm to have a liver biopsy and cholangiogram performed in the cardiac OR.  If it is found that she does indeed have biliary atresia they will go ahead and perform a surgical  modification to her liver at that time (Kasai procedure).  They are also checking her parathyroid and kidney function.  If she tolerates her new formula well, they will soon be switching her from IV heparin to oral aspirin therapy.  It is unlikely that they will remove the IV that is keeping us from being able to hold her as they are looking at possible surgery next week and want to keep that line in. 

Wednesday September 25, 2013 Update

Today I arrived at the hospital around 2PM.  Lenah did not appear more yellow than yesterday, but also did not appear less yellow than yesterday.
- heart rate good
- blood pressure good
- oxygen good
- feeds increased to 9ml/hour
-she had a long calm awake period

Her bilirubin counts went down very slightly.  I am praying that as her feeds increase, her bilirubin count will decrease.  They have her tentatively scheduled for a liver biopsy and cholangiogram on Thursday, October 3, at 3 PM. Cholangiogram is an X-ray imagining study performed by a surgeon in the operating room to determine if there is blockage of bile flow in the ducts leaving the liver. I am still hoping and praying that she will not need these tests at all.  Her stools have continued to be normal.

Here is a picture from today. She looks really awful because the hat they have on her is very tight to hold the CPAP tubes in place and it squishes her face something terrible.  It makes her look a bit monstrous.  Her face is so squished she has a hard time opening her right eye. The tubes in her nose also push up on her nose as well. It must be very uncomfortable.

Frankenheart

This is the drawing of the modification of Lenah's heart.  It was drawn by one of the fellows present at Lenah's open  heart surgery. 
 

Tuesday, September 24, 2013 Update

  Today I arrived at the hospital around 2PM.  I immediately noticed that Lenah looks more jaundiced.  Her nurse was gone to lunch and the other nurse said he would be back shortly.   I went to get my self something to drink and came back later.  As of today:
- her heart rate is good
- her blood pressure is good
- her oxygen levels are good
- she is still on the CPAP
- her respiration rate is good
- she has been tolerating her feeds well, no more tummy trouble
- she had a poopy that was regular in appearance
- she is on the same medications as yesterday
- no more trembling/shivering
- skin more yellow in appearance

The jaundice really concerns me.  I am really hoping and praying that her liver is okay. 

Monday, September 23, 2013 Update

 Today Lenah looked better to me.  She actually opened her eyes and looked around and at me and had a peaceful "awake" time.  She did not tolerate her feed very well overnight and so they will try to resume feeds Tuesday morning.  They also did a renal (kidney) ultrasound overnight and everything looks good with her kidneys.  They tried to remove the CPAP machine but her breathing seemed too labored without it even though her O2 stats stayed good.  They are tentatively scheduling her next week for liver testing depending on how things go for her this week.
Her trembling/shivering has stopped.  Her calcium was too high and they gave her something to balance that and seems to have done the trick. 
  I am hoping and praying that her bilirubin count gets better and that she starts feeding well and producing normal stools and that no further liver testing will need to be done.  Also, I would like to see her off of the CPAP machine.  It just looks so uncomfortable and she really hates it.
 

Sunday. September 22, 2013 Evening Update

This evening two of the gastro docs came by to talk to me. They suspect that Lenah my have something called biliary atresia. This is most definitley NOT good news. They suspect it because her bilirubin count is too high and and they saw something suspicious on her abdominal ultrasound. They will probably wan to do a liver biopsy and/or an injected dye x-ray/radiograph of some sort. If she does have biliary atresia in the short time they do surgery to connect her intestines to her liver in the long term she will require liver transplant.  Obviously, I am hoping and desperately praying that Lenah does not have biliary atresia. They are also checking her thyroid function.
On a good note, they finally started feeding Lenah by feeding tube at 6pm. I hope that she will do well with feeding.
James came by the hospital to pick me up and visit Lenah.
Hopefully, tomorrow will bring better news.

Sunday, September 22, 2013 Evening

This evening two of the gastro docs came by to talk to me. They suspect that Lenah my have something called biliary atresia. This is most definitely NOT good news. They suspect it because her bilirubin count is too high and and they saw something suspicious on her abdominal ultrasound. They will probably wan to do a liver biopsy and/or an injected dye x-ray/radiograph of some sort. If she does have biliary atresia in the short time they do surgery to connect her intestines to her liver in the long term she will require liver transplant. Biliary atresia occurs in 4 out of 1,000,000 people.
Only two people have survived long term with just the liver/intestine surgery. Obviously, I am hoping and desperately praying that Lenah does not have biliary atresia. They are also checking her thyroid function.
On a good note, they finally started feeding Lenah by feeding tube at 6pm. I hope that she will do well with feeding.
James came by the hospital to pick me up and visit Lenah.
Hopefully, tomorrow will bring better news.

Sunday, September 22, 2013 Morning Update.

  Lenah is still on the CPAP , but it is just on  room air and her O2 levels are staying up.  Her blood pressure and heart rate are still staying too high. They did find some concerning things on her abdominal ultrasound.  They think there may be some problem with her gall bladder.  They have ordered a gastroenterology evaluation for her.  They are also going to evaluate her thyroid function for any problems there.  They think that her tremor/shivering may be due to her calcium levels being too high and they are adjusting her medication. Her temperature has been good and steady. I don't yet know the results of her blood and urine cultures.
  I spent the night here at the hospital in the family waiting area and was surprisingly able to sleep quite well. 
  Thank you all for continuing to pray for us.

Saturday, September 21, 2013 Update

Well, little Lenah decided to act up a little bit today.  I left the hospital around 11pm last night and her O2 percentage had been staying a little low.  It continued to stay low and would drop even lower at times through the early morning hours. They decided to put her on the CPAP machine which gives her a constant pressurized air flow through her nose.  Her O2 has consistently stayed in the upper end of her good range since they put her on the CPAP.
  Her bilirubin levels have also been elevated so they ordered an abdominal ultrasound to check her liver.  I do not yet know the results of her ultrasound.
  She also has had a very slightly elevated temperature so they are ordering urine and blood cultures to check for any sort of infection.
 She is still having issues with her blood pressure staying too high.  They will probably have to increase her blood pressure lowering medication.
  She has another presentation that is concerning me.  She will have intermittent episodes where her her arms and legs draw up and she trembles or shivers.  This could be due to withdrawal of her pain medication.   It is at this time not a sign of anything serious, but will need to be investigated if it continues.

 These are the current prayer needs at this time.

I plan to spend the night here at the hospital tonight.  James and the children will pick me up sometime tomorrow evening.   

September 20, 2013 Evening Update

  Lenah's O2 levels are a little low for her current blood pressure rates so they are going to give her a blood transfusion to try to improve her oxygenation.  Otherwise, she seems to be doing well.

September 20, 2013 Update

  I arrived here at the hospital around 2:00 today.  I spent the night at home with the family and had breakfast with the children and did some laundry.  My friends mother, Denise, gave me a ride in as she works in the med center.  She is a lovely blessing.  I am thankful for her help.
   When I arrived to Lenah's room, I was greeted by a wonderful surprise.  Lenah has been take off of the ventilator, her chest tubes have been removed and the dialysis line has been removed.  They will be removing her pacer line momentarily.  Her face is a little swollen because of the tape removal.  You can see her before and after photos here.

 Before

 

After

  
  I am so very thankful.  The Lord has been so gracious to us.  Thank you all for continuing to pray for Lenah.

Public Service Announcement : Ronald McDonald House

  I spent the night Tuesday night in the Ronald McDonald house here inside Texas Children's hospital.  Friends, if you are unfamiliar with what the Ronald McDonald program does for families of ill children, let me share with you some of what they do.  Lenah's surgery was done on the 18th floor of the West Tower at Texas Children's Hospital.  On the 17th floor there is a large, mostly comfortable area where families can rest, try to relax, and wait while their child is in surgery or in the CVICU (cardiovascular intensive care unit).  Also inside this waiting area they have a living room/kitchenette that is maintained by the Ronald McDonald program.  They make snacks and drinks available at all times to visitors. They also have two shower rooms and two toilet rooms. These areas are available 24 hours a day.
  In a connected building there is another area - an in-hospital Ronald McDonald house that also has a living room type area, kitchen area, library, computer area, laundry room, and 20 small hotel type rooms with private bathrooms. The living/kitchen areas in this part are open from 9am-9pm.  The hotel rooms are available 7pm-11am on a level of need basis.  If your child is having surgery that day, you are considered a priority.  If your child is in intensive care you are put on a level of need, then first come basis.  In the afternoons from 1-5 they have these rooms available for napping on a first come-first served basis.  These areas are available at no cost to families and are staffed by many volunteers.  For families that live far away or need longer term or larger space, there is another building the Ronald McDonald House that has apartment type housing for families to stay in while their child is hospitalized.  These apartments are $15 a night.  These areas have been a tremendous blessing to me as I can not drive for another week or so because of my c-section.  So, the next time you visit the golden arches drop what you can in the box.  They do good work.

September 19, 2013, Thursday AM

Today they were able to take Lenah off of epinephrine because her blood pressure has come up to a good range for her.  They reduced her respirator from 24 down to 20 during the night and are continuing to wean her from it today. The plan is for her to be off of it by tomorrow night. They plan to remove her chest tubes today as she has almost no drainage or blood coming from them as of this morning.  Her urine output has increased to a level that makes them think they will maybe take her off of peritoneal dialysis this evening. She has not had anymore bleeding from he dialysis tube. Her O2 levels have continued to stay with in her good range and her heart rate has remained within her good range as well.  An x-ray revealed some haziness so they did some cupping treatments to try to break any congestion loose.  They are also removing her umbilical IV today.
  Around 10:30 today she was stretching and opening her eyes and she seemed like she was trying to cry for a bit.  Her blood pressure crept up and she seemed a bit distressed.  She was given some pain meds and calmed after that.
  Overall, she is doing very well and her  body is doing all the things they want to see it doing. 

Post Norwood operation pictures

 Her fancy crib

Please pray

Please pray friends. Lenah's O2 sats (percentage of oxygen) are dropping a few points and she has blood in her peritoneal dialysis line. Not sure why on either issue just yet. They are trying to determine the cause

Surgery Day Final Update

James and I were finally able to see Lenah around 8:30 pm. I was so overwhelmed. The tubes and wires make you ache to see them. Seeing my newborn babe lying motionless was heartbreaking. BUT. Seeing her pink and alive was more than I could ever hope to express with mere words. I am beyond thankful. I know that this journey will at times be very difficult. I also know that my Creator is faithful. He carried us through today and will continue to do so. To Him be all the glory. Jesus still heals and saves. I am ever so grateful. Sleep well friends. Goodnight.

Surgery Day Journal

Lenah was taken back for surgery a few minutes after 7 am.

 

Surgical Update 9:50 am

They came out to let us know that line placement and anesthesia went well and they have begun the opening chest incision. They will give us another update in an hour or so.

 

Second surgical update 11:20 am

They have all lines and connectors readied to switch her over to the heart /lung bypass machine. Anesthesia and Respiratory are still pleased with her overall status. They will work on her actual heart momentarily. 

 

Third surgical update

At 1:35 they let us know that she was finally actually on the bypass machine and beginning actual work on her heart it took a little longer to get everything actually hooked up to the bypass machine than we thought. I didn't post at that time because there really wasn't much change from the second update. 

 

Fourth Surgical Update 3:18

They have completed the Norwood procedure on her heart and soon the echocardiologist will be in to verify how things look. Her heart, although not connected to anything else, has already begun beating on its own which is a good sign. They will be placing all the monitoring lines and pacemaker lines in and after that will begin raising her body temperature and soon after remove her from the bypass machine. So far so good. Your prayers are effective!

 

Fifth Surgical Update 4:45

Lenah is now off of the bypass machine. The echo was good. They are checking for bleeding and will make a determination if they will close the chest or leave open for a day or so just in case they need to fix something or if there is too much bleeding. Our next update should be with her surgeon.  

 

Sixth Surgical Update 6:00

She is completely closed up. They decided to go ahead and close her chest. The surgeon discovered some additional anomalies inside her heart that leads him to believe that Lenah has something called heterotaxy. They will be wanting to take a closer look at her spleen and intestines in the coming days. Inside her heart looks more like she had mirror images of a typical left side of the heart as opposed to having the distinctive differences that the left and right sides of the heart normally have. We will be able to see her in about an hour or so after she is settled in the CVICU. The next 48 hours are a very critical time period of watching for bleeding, abnormal heart rythyms, and adjusting medications. I will will try to give morning and evening updates and let you all know asap if her status changes. James and I are going to grab a bite to eat and then settle me in a Ronald McDonald room here at the hospital for me to be in overnight. Again and again, I can't thank you all enough for your prayers. The Lord granted us great peace throughout the day and I am so thankful for all of the concern and support of our friends and loved ones.

 

  

September 16th Update

Today has been another whirlwind day. I was released from the hospital at noon. I have just gotten settled on my couch at home after repacking all of my hospital bags in preparation for tomorrow. We had a consult with the cardiac surgeon this afternoon. James had to attend via speakerphone as he was still at work and it would have taken him at least an hour and a half to get to the hospital. We learned today that Lenah has a Double Outlet Right Ventricle and an Interrupted Inferior Vena Cava along with Hypoplastic Left Heart Syndrome. Tomorrow morning she will be undergoing the Norwood open heart surgery. It is an all day surgery – typically taking 6-8 hours to complete. The survival rate for this particular surgery is somewhere around 80 %. If Lenah were not to have this surgery, she would only have about a week left to live. Prior to 1981, babies born with a heart like Lenah would not live more than a week. Dr. Heinle is the surgeon that will be leading Lenah's surgery tomorrow. I feel like there is more I would like to say, but I need to get some rest. Once again, please pray for us. I feel like the river is running high.

-Lenah's mommy, Edie

September 13th UPDATE

  Wow, it has been a very long 48 hours. Lenah Olivia Wray was delivered by c-section at 9:03 AM Thursday, September 12, 2013. She weighed 7lbs 3 oz. I do not yet know her length. Her apgar scores were 8 and 9. She is doing very well at this time. Her oxygen stats are staying up pretty well and they even decided to feed her today. Sometimes, they do not feed babies with Lenah's heart condition by mouth until after their first heart surgery. I was able to see her briefly in the operating room and hopefully will be able to see her in the CVICU tomorrow.
  I started hemorrhaging a couple of hours after she was delivered and had to be taken back into the OR under general anesthesia for a D&C and a balloon catheter was placed to prevent bleeding. We are waiting on a final hemoglobin count in the morning to decide if I need a blood transfusion or not. My count had dropped from 12 pre-birth down to 6 or 7 after the hemorrhage. I spent Thursday evening and Friday morning in kind of a hazy blur. I experienced some pretty scary moments yesterday and I really appreciate all of you praying for me. I feel very weak and extremely sore, but am beginning to feel more like my self. I do not know how long they plan to keep me here in the hospital, but I will post as I know more.
At this time, the big consult for Lenah's treatment plan is scheduled for Monday morning. James was told that after looking at her first trans thoracic echo cardiogram her aortic arch is indeed very small and she will most likely need a single ventricular path of repair. So it looks like we are looking at having the Norwood procedure done very soon. We will let you all know more as we have more information.
Now, for pictures!

Sept 11th Update #2

Well, my doctor came to speak to me to let me know they have decided that it is best to deliver Lenah in the morning. The protein count in my sample was 292 which was just under the cut-off (300) for acceptable range. So I am not in grave danger at this time, but I am potentially close to developing additional problems if not delivered soon. I am more than a bit upset over this. I guess I was just really hoping to delay delivery a little longer. So.. at this time, I am scheduled for surgery at 7:30 AM. But it may be a little later as the OR has a very full schedule for tomorrow. I am very apprehensive about the epidural and surgery as many of you know. Please pray that the Lord would grant me His peace that passes all understanding as I feel myself in great need of peace at this time. On a happy note, our sweet baby will get to share her birthday with our wonderful friend Mr. Jose Diaz.

September 11th Update

Friends and Family: Yesterday morning I was admitted to the hospital because my blood pressure was very high at my weekly OB appointment. They also found protein in my urine. I have been monitored overnight and they are checking my kidney function as well. I was hoping that I would get to go home today after the results comeback from the 24 hour urine test they are doing. It seems, though that even if the results are good, they want to keep me here on bedrest, but if they are not good they will want to deliver Lenah in the morning. I had really hoped that I would be able to go home and do some last minute prep things and actually pack my hospital bag before it was time for the baby to be here. Looks like that probably won't happen. I am currently 37 weeks plus one day gestation. Even though that is considered full term, I was hoping that Lenah could gestate as long as possible for her neurological and organ development to give her the best fighting chance for living well on the outside. Please pray that all of us would make the very best decisions regarding care for all of us. Please also pray for my children at home that things will go well for them, too. I miss them.