Extubation

The major accomplishment of this week is getting Daphne off of the ventilator!  This happened on Boxing Day (the 26^th).  It also happened to be Daphne’s 9 month birthday.  What a birthday present!  It has been great that Daphne has taken this step forward. 

There have been some complications though.  Daphne has been breathing on her own, but she has been working very hard to do so at times.  Chest x-rays have shown a lot of fluid around the lungs.  They decided to put a chest tube in to drain out the fluid.  A test of the fluid showed something called chylothorax.  It means that at some point a lymph node has been nicked causing lymphatic fluids to leak.  To stop this, Daphne’s diet has been changed to a special formula with medium chain triglycerides instead of long chain triglycerides.   This should reduce the leaking and give her a chance to heal. 

This week Daphne’s WBC also went up again.  She had a fever and has had diarrhea.  They have put her back on more antibiotics again and she had another CT scan.  The CT scan didn’t show any problems.  She is also dealing with withdrawal symptoms, which could also explain a lot of her problems this week.  It has been great to hold Daphne more easily and not see that huge tube in her nose, but seeing her work to breathe, and hearing her sad little cry is hard too.   But overall, we are making steps forward which is great!  She has come a long way. 

Getting ready for Christmas

Daphne’s broviac surgery last Saturday went well.  Her broviac has two ports in it which is very helpful.  Right now her broviac is her only line.  It is great to see her with less lines.  At one point I think she had six lines for IV access.  Her broviac surgery was done by Dr. Dicken, who has shown amazing care and attention to Daphne.  This was her third time in the OR with him and we were able to send her along with full confidence that she was being well taken care of.  We later found out that Julie, a good friend of ours from church, was one of the nurses in the OR too.  Another great comfort to us. 

Sunday we did get some bad news.  Daphne has a JP drain in her abdomen for any fluid that might accumulate in there.  The fluid draining out of her had been tested and it tested very high for lipase.  Lipase is from the pancreas.  This means that her pancreas may have been nicked during one of the surgeries.  Her lipase levels in her blood are still good which means her pancreas is still functioning well, just that lipase is leaking out into her abdomen.    The transplant surgeon didn’t seem worried; he said the JP drain will have to stay for atleast a month to six weeks to make sure the lipase doesn’t stay in.  The lipase is an enzyme for digesting food so it isn’t good to have in the abdomen.  I sure hope this issue resolves quickly, not cause I am impatient (this process has taught me to wait) but because I worry about the damage a digestive enzyme can do in her abdomen. 

Sunday wasn’t all bad though.  We got to hold Daphne!  It usually takes 4 people to get her from the bed into our arms safely since she is on the ventilator and the lines to her IV pole aren’t very long, but it is worth it.  She was also very smiley and playful on many occasions this week.

Monday Daphne had a metabolic cart study.  It is a study to see how many calories Daphne needs.  Up till now her calorie needs were very low, but on Monday they were much higher.  This is a wonderful thing!  Her body is gearing up basically, although I’m sure a dietician could explain it much better than I can. 

During the beginning of the week there were some bumps.  She had fevers at times, some of her liver numbers were up, her WBC went up again, she tested positive for EBV virus, she did not respond well to weaning off her morphine and sedation well one day, she also did not respond well to continual weaning from the ventilator, but somehow none of those things seemed that bad and the week has still ended well.  Some of her antibiotics were changed and now her temperature seems to be under control and her WBC has gone down.  As for EBV she is being treated for it.  The EBV was not that surprising since we already knew both of her donors had tested positive for it, which means at some point her donors had gotten “Mono”.  As for the morphine and sedation, they had been weaning her off of them for a bit and at one point she just seemed to need a break.  It was kept steady for a few days and now they have started to wean her off them slowly once more.  The same goes for the ventilator.  Today she was ready to start weaning off of it again but more slowly this time. 

Because some of her liver numbers were up she did get a biopsy this week.  It does not show signs of rejection or any signs of infection so far.  Since then her liver numbers have started to go down again.  She has also been tolerating her feeds really well.  I have run out of expressed breastmilk so now she is on Pregestimil.  Also her TPN is off.  TPN is total parenteral nutrition, which means nutrition through an IV.  I recently learned that TPN is hard on the liver, so maybe this explains some of what has been going on.  Daphne also had another CT scan this week to check for collections of fluid.  The images did not show any collections. 

As for today (Friday) she looks so beautiful.  She amazes us everyday.  The only thing today is that there was some bilirubin in her JP drain. 

Also I just had to include some pictures of Rowan at her Sunday School Christmas Concert.  I have to confess, she did not attend regularly leading up to it and I didn’t even know which songs they were doing, so she was very ill-prepared to say the least, but she was adorable in her leopard print dress and bright pink puma high tops she calls her “pumped up kicks.”  She also did not like staying put with the other kids and obviously has not had lessons on sitting like a lady when wearing a dress in front of everyone at church. 

Oh well, she wasn't the only one not singing, but she had a blast catching up with her cousin Carys afterwards.

She does miss her sister though.  Before bed she talks about her the most.  Tonight she was sobbing about it.  Brad and I take turns during the day being with Daphne and with Rowan and a Grandma or Aunt takes over for the evening so we can both put Rowan to bed.  The other day Brad told her that they (him and Rowan) were going to pick me up earlier from the hospital so we could have dinner together and then drive down candy cane lane.  She did not like this idea because then Daphne would be all alone.  It was so sweet that she thought of her.  Once we explained that Grandma would be at the hospital with Daphne she was ok with it. 

Bowel perforation

Daphne’s last liver biopsy did show some signs of rejection.  Her doctors increased her anti-rejection drugs.  Although rejection is very serious, the solution seemed pretty straight forward, as she had been on the lowest level of anti-rejection drugs at the time. 

Sunday she was given another CT scan because her abdomen was getting bigger.  She was given contrast and it didn’t show a leak, but they could tell there was more air in her tummy since the last CT.  This air had to come from somewhere, but without the contrast leaking through the bowels in the scan it wasn’t clear what was going on.  There was a very strong difference of opinion on the issue.  The intensivists were certain there was a perforation in the bowels regardless of what the CT said.  The transplant surgeons didn’t agree. 

Monday the transplant surgeons did decide to take Daphne to the OR for a wash-out and to look at her bowels.  They did find a small perforation!  They closed up the perforation, did the wash-out and removed her dying spleen.  After all of that there was so much room inside of Daphne’s abdomen they decided to close her up completely, skin and fascia (muscle).  This might sound like an obvious thing to do next, but sometimes it can take a very long time before they close up the muscles as well, some transplant kids are sent home without that done.  As for the explanation as to why this perforation never showed on any of the CT scans was that the hole was in the length of bowel off of her liver not her stomach.  If you have studied anatomy and that sounds strange to you it should be; Daphne’s anatomy is very unique at this point.  The rest of us have a hepatic duct coming off of our livers not a length of bowel.  This perforation was what was keeping her WBC high, but because of the location of the perforation she wasn’t getting seriously ill like most people do when there is a hole in their bowels.

We feel like this is a major turning point.  Her WBC is down now.   She has been doing well off of dialysis.  They even took out the dialysis line in her neck.  We are now waiting for her lungs to get stronger.  Being on the ventilator so long has made them weak.  Weaning her off the ventilator will be a slow process. We will just need to be patient.  Today Daphne had a minor surgery to get a broviac.  It’s a more long term way of getting IV meds and blood work.  Her PICC line needed to be removed.  Getting a broviac seems like a very positive step forward, like we are preparing for life at home post-transplant.  The broviac will be used for all the frequent blood work she will need even after we are sent home. 

One more thing, this week Daphne has also been moved to a new PICU unit.  We have a window and it is spacious and quiet. 

Tests, tests and more tests!

Last week it seemed that the white blood count was going down.  Unfortunately, Monday it started to rise again.  A good thing that happened Monday was we started feeding Daphne again.  She started with 3 mL/hour of breast milk through her NJ tube and now has worked her way up to 9 mL/hour.  She has tolerated her feeds well so far. 

Tuesday another setback was putting Daphne back on dialysis.  Her kidneys weren’t too bad, but since the lasix dose she needed to help her pee was hard on her kidneys, dialysis seemed like a better choice.  Also, a throat swab came back positive for the CMV virus.  We are not sure where it came from.  Pre-transplant she was negative for it and both her donors were negative for it too.  The two possible ways this might have happened was either from some of the blood she received or that she already had CMV despite what her pre-transplant test had indicated.  CMV is very common.  I was told almost 90% of the population will have it by the time they reach 18.  For most people it isn’t a big deal, but since Daphne’s immunity is suppressed she will be on meds for it for the rest of her life. 

Wednesday Daphne had a CT scan scheduled.  They were worried that the fluid accumulating in her tummy might be infected.  The scan didn’t indicate that the fluid was infected.  Unfortunately, it showed other things.  It found a clot in her splenic vein.  The clot has been there long enough that her spleen is dying.  Since you can live without a spleen they do not plan to do anything about this.  It was terrible to hear the word clot again, but they think the clot was there for a while and not a recently formed one.  Since the spleen helps the body fight infections she will also need meds for this for many years.  She will also need extra vaccinations.  They also found some spots of dead tissue on her pancreas.  Her pancreas numbers have always been good though, so they expect it will fully recover. 

Thursday they decided to check the fluid in her tummy by removing some with a needle and testing it.  The fluid looked much darker than it should have, so there was some talk of the possibility of a bile leak.  Testing on the fluid so far has not indicated that there is a bile leak.  We are so happy about that!  It also doesn’t indicate that there is any bacteria in it. 

Friday Daphne underwent more testing!  She had a biopsy in the morning.  We are still waiting for those results.  The reason she was given the biopsy was because some of her liver numbers are up.  Rejection was mentioned, Dr. Yap said they would increase her anti-rejection drugs if this was the case.  She also had another procedure – I don’t remember its actual name – but basically she got a contrast dye enema followed by an x-ray to check for any leaks in her bowel.  One of the surgeons was worried that her bowel may be perforated where the two ends had been connected.  Her transplant surgeon didn’t think this was the case, but thought we should do the test just to be sure.  The x-ray did not show a leak!  There was some concern that the bowel looked a bit twisted, but the transplant surgeon said it was fine. 

So basically our week has been full of testing, interspersed with bad news, but overall things are still ok.  And a wonderful thing happened on Friday!  When Brad and I were talking to Daphne during one of her awake periods she was reaching up for our faces with her little hand.  She did that with me for quite a few minutes.  It was the sweetest thing!  I really needed that.  I was really starting to miss my baby. 

I should also mention the Donate for Daphne blood drive we had on Monday.  We had a great turn out.  It was wonderful to see everyone come out in support for Daphne.  In total we had 22 people donate blood just that day!  And there are many others who have booked different days. 

I’ll end this post with a picture of our happy little Rowan at her dance class.

Infection

This week we have been watching Daphne’s white blood count closely.  Cultures were taken from all her lines and she was given more antibiotics, but the WBC continued to rise.  On Tuesday the WBC was as high as 74.  They decided to take her into surgery for a “wash-out”.  They also planned on doing a liver biopsy and removing a blood clot she had on the outside of her liver. 

All week I felt like I had been pestering the doctors about when they were planning on closing Daphne’s incision.  The response I kept getting was that they were not even thinking about it.  Everyone was very concerned over Daphne’s tendency to clot.  Putting to much pressure on the liver would make clotting more likely.  I think they called it “compartment syndrome”.  They did not think her swelling had gone down enough to close her up safely. 

We had a pleasant surprise when she came back from surgery.  They had closed her incision!  After removing the blood clot, everything just fit into place better and they decided she was ready to be closed.  This will greatly reduce the risk of infections. 

Her WBC has continued to go down since the surgery.  It’s still higher than we’d like, but its heading in the right direction.  Another big step this week was taking Daphne off of dialysis.  Her kidneys are working! 

Our next step we are anticipating is starting feeds!  It’s hard to imagine that she hasn’t eaten in almost 3 weeks.  They will be NG tube feeds, probably 1 or 2 mL/hour of expressed breast milk.  Hopefully her system will be ready for this. 

We have also been hoping to wean her off the ventilator by Monday, but now I’m not so sure that will happen.  On an x-ray part of her right lung looks collapsed.  She also has a bit of a fever, so they have mentioned pneumonia.  Today they had to increase her breathing support.  That is a bit of a bummer, but overall she has been making progress.  Getting off the ventilator is just a bit delayed, but it will happen soon too I’m sure. 

As for Rowan she is feeling much better.  Here she is getting ready for playschool.

She has even come to visit Daphne again.

We took Rowan to the Leg grounds to see the Christmas lights one evening.

She also had a great time decorating the tree this week.

Donate for Daphne

8 months old today

This week started out stressful again, but has still been a good week overall.  Sunday night Daphne was having trouble breathing and needed to be bagged and suctioned.  Monday morning a chest x-ray revealed that a part of her lung may have collapsed or that fluid may have collected in her lung.  We were told that they would just continue to monitor the situation and that it was not uncommon for something like that to happen. 

Tuesday was much scarier.  An ultrasound showed no flow in the portal vein.  Daphne would have to go into surgery again to remove the clot.  We were devastated.  It was just one week ago that she had surgery to remove a clot after the first transplant, and that surgery had not gone well.  This surgery was very different though.  Last week Daphne’s clot was in the portal vein and the hepatic artery.  This week it was just in the portal vein which wasn’t as bad.  Last week, right before the ultrasound found the clot her blood work numbers started to show problems.  This week the clot was found before her liver numbers changed at all.  And also, this week Daphne was much healthier going into the surgery. 

After Daphne was done Dr. Shapiro explained that her main portal vein was only a few millimetres wide so he added a jump graft from donor vessel that is much wider.  This should help us avoid clots.  While she was in surgery Dr. Shapiro also connected her bowels, a surgery she was supposed to have the next day.  The only drawback was that now it would take even longer to close Daphne’s incision.  Things are too swollen to close her up. 

The rest of the week was less eventful fortunately.  Daphne’s progress was monitored closely.  Further x-rays showed that her lungs were clear.  Friday did bring some bad news though.  Daphne’s dressing had some fresh blood on it, also her ultrasound showed a clot on the outside of her liver.  Her heparin was stopped until her bleeding subsided, which it did and now the heparin is back on again.  Finding the right balance with her blood is very tricky.  It is extremely important that Daphne not form clots and that is why she is on heparin to thin her blood.  On the other hand, bleeding isn’t good for her either. 

At home we have been taken good care of by many friends and family.  Poor Rowan was sick this week, now her fever is gone but she is still a bit stuffed up and has a scratchy throat. 

Transplant

There has been so much going on this week I will start with a day by day description.  Hopefully I can get all the details straight.  The days are starting to blend together so I do hope I can write a coherent blog.

Sunday

Daphne’s ascites was getting so difficult to manage that the doctor tried a six hour albumin infusion.  We spent all day at the hospital.  In the evening we were allowed to go home on pass.  As we were leaving I walked by a group of people hugging and crying and talking in low voices.  I felt so sad for that family even though I had no idea what had happened.  My heart was so heavy that night knowing that a family would have to go through that to give Daphne her life saving transplant.  I was so sad and tired in fact that I went to bed with only my cell phone not the cordless phone as well like I usually do. 

Monday

At 3 am Brad came into our room (Daphne and I sleep in a separate room so I can manage tube feeding problems without waking up Brad.) He was talking on the phone.  I remember wondering why in the world he was taking an early morning work phone call in my room (I was too tired to think clearly!)  He had to tell me a couple times that this was THE call we were waiting for.  We turned off her tube feed; she would now be NPO (nothing by mouth) in preparation for transplant.  Daphne was so happy to be awakened and held at 3 am. 

When we got to the hospital we had to walk around with Daphne a great deal because she was not happy to be NPO.  There were also blood tests, swabs and urine samples needed pre transplant. 

Finally at about 2:30pm they were ready to take her into the OR. 

At 10 pm we heard she was now in the PICU.  We were so relieved and happy to see her again.  She still looked like herself and we had braced ourselves for the tubes and all the support she would need in the PICU.  They had closed up the skin over her incision, but not the muscle underneath.  This is standard transplant procedure because so often more surgeries are required for “fine-tuning.”  Also, this could add to much pressure to all of her internal organs which have swollen due to the stress of surgery. 

She was stable and everything was looking good so Brad and I went home to get a good nights rest.

Tuesday

 In the morning when I got back everything still looked wonderful. 

I went home for lunch and Brad was with Daphne.  I was getting Rowan ready to visit at the hospital at 3pm, when Brad called with some bad news.  I left Rowan at home with my Mom and rushed back to the hospital by myself.  An ultrasound had shown that there was no blood flow to the liver!  They were planning on taking her back to the OR soon to remove some blood clots out of her hepatic artery.  When we signed the consent the surgeon said it would be “One, to two, to three hours.”  This was at 4pm.  They didn’t bring her out until 10pm. 

When they did we were told that as they were working to remove clots from both her hepatic artery and her portal vein she started losing a lot of blood.  We almost lost her during that surgery.  During surgery she became Status 4f, that means she had less than 48 hours to live without a transplant.  The call was made nationally for a liver and before she was out of surgery they had a liver for her from “the east coast”.  The liver was expected to arrive the next day at 6pm.  We needed to keep her alive till then.  That night was the longest night of our lives.  We were up all night with Daphne, begging and pleading with her to keep fighting.  Begging and pleading with God not to let our little one slip away.  In the PICU she was still losing a great deal of blood.  The nurses were constantly charting her blood loss and giving her more blood product.  We were told that just in the PICU that night she used 3.6 L red blood cells, 1.5 L plasma, and 3 units of platelets.  That is more than her weight in blood. 

Wednesday

I think it was around 3am that her blood loss started to get even worst.  She was losing about a cup of blood every 15 minutes.  In the morning Dr. Bigham decided her only chance at surviving until the next liver came was to take her into the OR and remove this liver and manage her blood loss in the OR.  Our family knew how serious Daphne’s condition was but we didn’t tell them that Dr. Bigham had said Daphne was so fragile she might not even survive being transported from the PICU down the hall to the OR. 

We were told very clearly that this could be the last time we might see our precious baby alive.  We were obviously very distraught.  I think I wept buckets of tears for her.  My prayers were desperate cries of help for my baby.  Before she left for the OR I again pleaded with her to hang on.  I told her how I didn’t think I could go on without her.  I told her how much her sister loved her, how much her Daddy loved her, how much everyone loved her.  I promised to take her to the beach.   I reminded her of Rowan’s plan for the whole family to dress up like the Scooby Doo gang next Halloween.   I also did tell her if she just had to go it would be ok.  That was the hardest thing ever.  I told her I would meet up with her again even if she had to go.  But I did beg and plead with her to be strong.  I told her I loved her and believed in her so very much.  I told her we were not giving up on her. 

They wheeled her down the hall.  Brad and I went to lie down and weep. 

My memory is a little fuzzy on when all of this happened.  I was told that she was waiting open and without a liver in the OR for 5 or 6 hours. 

We were waiting in the PICU waiting area when at 6:05pm we saw three EMTs walk down the hall carrying a cooler.  No one actually told us this was the liver, but we were very excited.  We were also nervous because no one ever told us when the actual transplant was starting.  But it didn’t take very long because they brought Daphne back to the PICU at 10pm.  This time they were unable to close up her incision at all due to swelling.  She was brought back to the PICU with her incision completely open, with just a dressing over top. 

This picture can give everyone an idea of all the life saving technology that kept Daphne alive.  The one thing you can’t really see is the dialysis machine.  It is behind the pillar. 

That night the doctors and the nurses were struggling with low blood pressure all night. 

Thursday

A major turning point was at 6:30am, the nurse changed all of her blood pressure meds in anticipation for shift change.  Changing from the OR meds to the meds mixed in the PICU caused her blood pressure to go from 71 to 155!  From there they immediately started weaning her off of her blood pressure medications and she became stable.  They don’t exactly know why this happened!  In theory the OR and PICU meds should have been the same.  It’s easy to say there was some sort of human error that got sorted out through all of this, but we feel like this was a moment when God’s hand was turning things around for good. 

This turned out to be an amazing day.  Daphne opened her eyes a few times.  Brad and I were ecstatic and in awe of the miracle we just witnessed!  We are so happy the doctors never gave up on our little angel.  Talking to Daphne when she had her eyes open was such a good feeling. 

That night we had some minor bumps, but all was well. 

Friday

Two major things happened on Friday.  She had another surgery at 6 pm.  The surgery was to attach her bile ducts, remove some gauze that had been left to control bleeding, and to access the damage that was done to her large intestine during all of this.  This surgery took about 2.5 hours.  A part of her large intestine had to be removed.  Currently there are two ends of her intestines not connected.  Doctor Shapiro is confident that they can be connected in 4 to 5 days after things have settled down.  The other major development of the day was to take her off the oscillating ventilator and onto a regular one. 

Saturday

That brings us to today.  Daphne is doing well.  Some people talk about how we need to take life day by day, but Brad and I have really learned to take things moment by moment.  We know how fast things can change.  We are also very aware of how far Daphne has come and how far she still has to go.  She is a fighter and has come this far, everyday we remind her of that.  We are also so very thankful for everyone who has brought us to this place.  Doctors, surgeons, nurses, respiratory therapists, our superstar anaesthetist, the entire transplant team are just some of the professionals who we are thankful for.  We are also so thankful for the tremendous support we have had from our family.  They have been with us through it all; taking care of Rowan, feeding us, keeping us company in hospital, taking care of our house.  The outpouring of support from friends, family, and church family on facebook has also been an incredible encouragement.  Also, words cannot express our gratitude toward donors.  The amount of blood that poured in and out of our baby was enormous.  Please donate blood!  I would like to keep track of people who donate blood in Daphne’s name to see if we can’t restock the blood bank.  Like I said on facebook, please send me a picture of you donating in Daphne’s name so I can keep them for her to see.  And of course, there are her two angels who donated a piece of their lives to help Daphne.  I am so thankful that two separate families chose to donate their loved ones organs in the midst of their grief.  I encourage everyone to discuss organ donation with their families now.  And most of all we are so thankful to a God who loves his children more than we can imagine, a God who is mighty and capable of miracles.  We don’t have the answers as to why this has happened to us, but we know suffering and anguish are not unique to just us.  There is a world full of hurt, but God is good and his love knows no bounds. 

Waiting

Monday Daphne had another ultrasound.  There were no clots visible.  One thing they could see however, was that the flow in her portal vein has reversed. This is why her ascites is getting difficult to manage.  Daphne had albumin and lasix 4 times last week and just today did we see any change in her tummy.  The doctor also mentioned that now instead of becoming more and more enlarged her liver is starting to shrink.  All of these things are expected outcomes with severe liver disease. 

A nice thing about this week is that we have been able to go home at night to sleep.  It is so nice to sleep in our own bed and wake up and shower in our own house.  I also get to spend more time with Rowan this way. 

This weekend we are also spending more time at home.  Here are some pictures of the girls this week. 

PICC line

This was another busy week.   We had spent a wonderful weekend together.  Rowan has taken to playing doctor. 

It felt so good to all sit around the table together.  Rowan and Daphne were so happy to be together.

Sunday we did go back to the hospital to get her IV flushed, but it wasn’t working anymore so it was removed.  That made bath time simple that night, but it did mean she would need something more long term.

Monday morning we packed our bags and went back to the hospital.  We dressed Rowan and Daphne up for Halloween since there was trick or treating at the Stollery that morning.  Rowan was a fairy and Daphne was a monkey!

Since Daphne needed more albumin soon and she lost her last IV site we had to plan for a PICC line.  This is like an IV, only it is advanced much farther (toward the heart).  A PICC line lasts much longer than a regular IV site.  They could not get Daphne in that day but planned on it for Tuesday.  Daphne would need to go under general anaesthesia for this so Tuesday she would have to be NPO for a while again.  Since the NPO might go long and she really needed more albumin in the meantime we did need to give her another regular IV.  This was a nightmare!  A doctor (who is apparently very good at IVs with babies) took 2 tries.  We gave Daphne a break and later on a PICU nurse tried twice unsuccessfully as well and then we decided to use a scalp vein.  There is something so disturbing about seeing a baby with an IV in their head, but I do wish we would have done it sooner and saved Daphne from having 5 pokes! 

Tuesday Daphne had her albumin and lasix and her NPO lasted 10 hours.  She handled it pretty well.  We did a lot of walking around with her in the stroller to help make her content.  I am very happy with the PICC line.  It will save her from so many pokes and the site doesn’t leak at all like her last broviac did. 

Here is a picture of Daphne getting her vitals checked.  You can see a bit of the PICC line on her right arm.  In this picture you can see Daphne being fascinated by her glowing red toe.  It was at about this age that Rowan really seemed to discover her toes. 

We were hoping the rest of the week would be boring now that the PICC line was out of the way.  Unfortunately, Wednesday Daphne would barely nurse and was not happy at all.  Her blood work showed that her ammonia was high and her hemoglobin was low.  She received some blood to help her hemoglobin. 

The next day Daphne was put on almost continual NG tube feed, 20 hours a day.  This really improved her mood and her energy level.  She started nursing again!  She should be getting lots of calories now!  And as you can see she still manages to look gorgeous even while in hospital!

We are also not letting the continual feed feel like a prison sentence, we are still getting out of the room as much as possible.   We spend a lot of time walking around the hospital.  Daphne and I also love the Healing Gardens.  Every hospital needs a beautiful space like this. 

Friday we were given the ok to go home on pass again.  The only thing we need to do is go back every 12 hours to get her PICC line flushed.  That is a bit of a bummer, but it’s worth it.  Daphne is so content and happy at home and Rowan is absolutely thrilled that we are all together again!