So we've been home a few days now and are tryign to get back into a routine.  Feeds are still sort of an issue for Zoe, she can't tolerate the volume she could before.  So we now do 6 feeds a day of 105 mls and do a continuous feed at night to try and get her volume  up.  Even with all that she still isn't at the caloric level that she needs so she isn't gaining any weight.  The day before she has surgery she weighed 16 pounds 8 ounces and today she got weighed and she weighs 15 pounds 13 ounces. Hopefully as soon as she gets her volume back up she'll get nice and chubby again.  She is in the 59 % for length at 27.5 ". the 10% for weight at 15-13 and the 8th percentile for head circumference (up from 3%)  How's that for all over the place. 

Apparently after a g-tube placement it can take a little while for the stomach to readjust and handle volume again, hopefully it happens soon.  She is still throwing up several times a day, usually becasue she poos or sneezes, smaller amounts this time, but probably only becasue her feeds have less volume. 

Other than all the feeding issues, she is super happy and bouncy.  We've been able to spend a bit of time outside on nice days, which she loves.  She starts smiling and cooing the second she goes outside. 

Zoe had her 9 month check up today and the doctor was very pleased with how she is doing developmentally. No crawling yet, but she does get her knees up under her and up on her arms abit to lunge herself forward.  Another few weeks and I think we'll be there.As I think all of you know, the three of us had been stayign at my parents house since we got back from the hospital.  We finally got into our studio three days before Zoe's surgery and are still working on getting totally settled. I thought I would post a few pictures so you can see what it looks like.  The colors are a bit washed out, but you get the idea.

We get to come home today!!  We are still finishing up our training for flolan and the G-tube, but by early evening we should be back atthe studio. Zoe is doing great with her feeds.  She is up tp 120 mls so we are getting there.  It's been a long 10 days, but as long as Zoe gets better and hopefully stops puking it will all be worth it.  More later...

Excited to go home!!!!

So Zoe's doing fantastic.  It's like having our old Zoe back.  She was super smiley and happy all day today.  Her oxygen stats are great as is her heartbeat.  She is back on oxygen at night while sleeping. It's not that she needed it, she still stated 95-100 at night, the cardiologists just thought it couldn't hurt while she's not moving around. We still haven't started feeds yet.  She isn't draining any more bile but the surgeons wanted to give her one more day without feeds to let her stomach settle.  Tomorrow we should be able to start pedialite.  Ner NG tube was pulled this morning so as of this morning Zoe officially has no more tubes taped to her face except for oxygen at night.  It's so great to be able to see her whole face and I know she's much happier about it.  Crossing our fingers for starting feeds tomorrow. 

So as of about 3:00 yesterday afternoon, Zoe is off oxygen and doing it all on her own. One of the cardiologists came in to see her yesterday afternoon and asked why she was still on oxygen when she was on sildenafil and flolan, He said that adding oxygen to the mix is like throwing a spitball at a bomb.  So he wrote the ordert to take her off it and seehow she does. She slept the whole night off it and is still doign great right now.  In fact they actually have her off the monitors right now.  Her stomach is producing a lot of bile which she keeps throwing up so they connected a gravity tube to her new G-tube to drain off some fluid and see how that works.  We still won't be able to feed her today, hopefully tomorrow with some pedialite.

She slept great last night, she had some adavan at 9:00 and crashed out until about 7:00 AM and she has had two naps since then.  I think she is finally getting caught back up on sleep.  She is much happier today, still abit weak, but at least she is no longer non stop crying.

Can you believe it, we might actually be going home in a few days with a baby with no tubes taped to her face!!!

It's been a long few days.  Zoe has been totally out of sorts until about 7:00 last night.  She has been so hungry and irritated that she hasn't been sleeping well at all and therefore had had about 10 hours of sleep in about 36 hours-  not nearly enough for a little baby just out of major surgery.  She hadn't been taking any pain medication which was great becasue she wan't in pain, but her hunger and frustration just got the better of her.  Jason and I have never seen her act like she did the last few days- constantly crying and fidgeting, totally uncomfortable and unconsolable.  Nothing made her happy, no toys, no snuggling, not even the binky which she wouldn't let go of but was too spastic to hang on to by herself so we had to hold it in her thrashing mouth nonstop. Saturday morning I finally asked if there was something that we could give her that would calm her down,  the nurse suggested Benadryll.  The first dose worked great, she fell asleep for about 1.5 hours.  When she woke up we gave her some tylenol because she was burning up and her heartrate was particuarly fast.  When it was time to give her more benadryll, it did absolutley nothing and again she was so exhauseted she couldn't wind down and fall asleep.  We finally gave her a dose of adavan, an anti-anxiety medication which helped her sleep for a few hours Saturday night before she woke up again.  For about 24 hours she was on a bendryll, tylenol, adavan medication dose, none of which was helping.  The oncall cardiologist came by on Sunday morning and thought that Zoe might be getting dehydrated and that could cause all of her discomfort also.  She had not been getting any TPN (total parental nutrition- the IV fluid drip that keeps her hydrated and gives her calories.  She has had a giant NG tube down her nose to drain her stomach bile and acid until her stomach wakes up.  She was also getting a heavy duty diaretic that was causing her to pee massive amounts when she wasn't getting enough fluids anyways and becasue of this she was losing weight.  She went from 7.8 kilos down to 7.3 kilos this morning. 

Margi, Jason's mom, and my parents came over to visit yesterday and both Margi and my mom were wondering if the benadryll was causing her spaz out like she was.  So we cut out the benadryll and just switched Zoe to tylenol and ibuprofin during the day and gave her adavan at night to help her sleep.  She seemed much happier and we actually got quite a few smiles out of her yesterday afternoon.  Last night she still didn't want to go to sleep adn she was exhausted so we gave her a dose of adavan and she fell asleep for about 5 hours.  Her perifial IV went bad for the second time at about 4 in the morning so we had to have it replaced, but she did great.  She is using her periferial IV for her TPN's and any other meds.

This morning the surgical team decided to try clamping off her NG tube and see how well she processed all her stomach bile on her own.  She did great, and so we got to take out the giant NG tube this afternoon. We'll see how she handles it.  If she ends up throwing up a lot, it will have to go back down.  We still won't be able to try feeding her until tomorrow at the earliest and then we will start with pedialite.

She is so much happier now, no tubes on her face for a few hours.  We will have to put in a small NG feeding tube for at least a few days and she will most likely still have to have oxygen, but at least for a bit she had no tubes on her face.  She rolled around like crazy, laughed and bounced-  just like our old Zoe!!

Oh yeah,  we are now on the regular surgery floor, no more PICU, we got transferred out on Saturday evening.

Zoe's doing great.  She hasn't had any pain medication since 6:00 pm last night.  She woke up around 3 in the morning throwing up some because her NG tube which is draining her stomach bile wasn't working as well as it should.  The plus side of this was that as soon as she did, she looked great.  She seemed herself again for the first time in a couple days.  She was smiley and talking and didn't appear to be in any pain. She fell back asleep shortly after and was acting great again this morning and all day today.  The doctors are all pleased with how she is doing.  They were talking about moving her out of the PICU today, but hospital policy says that someone on Flolan has to be in the PICU for 48 hours.  So she will most likely be moved tomorrow morning.  Zoe's been super snuggly lately and we of course love it.  We are still working on all our training for the medication and will start training with the G-tube in a few days.  Zoe's bowels are starting to make noise and gurgle again and she has had a bowel movement so we migh be able to try giving her some food tonight.  She would love that, she has been sucking like crazy on her binky,  she is so hungry, she hasn't eaten in 3 days.  The doctors and nurses have been fantastic and they love Zoe- who doesn't?

More tomorrow, hopefully from somewhere other than the PICU.

Yesterday was a long long day.  Zoe was scheduled for her G-tube, central line and posible LADD procedure at 1:30.  Jason and I headed over with my mom and got to the hospital around 11:45.  We checked in and waited.  The surgery prior to Zoe's went a bit long so Zoe didn't get into surgery until about 3:30.  We were told it would be a 2.5-3 hour procedure and instead it turned out to be about a six hour procedure and then another three hours before we were able to see Zoe.  Zoe was doing great pre-op.  her stats were great, she had put on some more weight and she was her usual happy happy self.   She was up to 16 lbs 9 oz.  and stating 100% oxygen and her lungs sounded totally clear. 

The surgeon who was supposed to do Zoe's procedures was called out of town on a family emergency so we had a new surgeon, Dr. Avansino.  He was fantastic and met with us before hand to go over everything that was being done. He talked a bit more about the possible LADD procedure.  This is something that is done if there is malrotation of any of the lower abdominal organs.  Dr. Jeremy Geidushek, the cardiac anethsethiologist, was also fantastic- a very calming presence.  Zoe had been in surgery for about 2 hours when we got a page saying that they had just got the central line in and now they were going to start the G-tube procedure.  The nurse also said Zoe was doign great under anethsia.  A couple hours later we got a page saying that they were almost done with the LADD procedure and would soon be starting the G-tube and that it would be another 1.5-2 hours.  Zoe finished surgery around 9:00 PM and was in recovery for about 2 1/2 hours before she was transfered to the PICU where it took another 45 minutes or so before we could see her.  We got to see her at around midnight.

Dr. Avansio  came to talk to us and explain what had taken so long.  Aparently getting her central line in was way more difficult than usual because of several factors. First her veins are so tiny, second because she was on ECMO and had her arteries tied off on the right side, many small veins have started in odd places which makes it difficult for the line to make  a straight pass.  The other thing is that because of her high pressures and the blood that shunts from her heart, it causof the tip of the catheter to flip up and not stay in place very well.  When it came to her abdominal area there were also lots of issues.  They made a small incison above her belly button so they could get to her stomach for the G-tube.  But becasue of her previous CDH surgery lots of scar tissue had formed and all the organs had adhered to themselves and to odd places.  He had to seperate all the organs and put them back in the right places before he could even find the stomach.  They also took out her appendix since they were in there.  All this scar tissue and adhesision is something that probaly wouldn't have caused any long term issues and something that wouldn't even have been noticed had we not done the G-tube.  It's a procedure that because she was growing well and not vomiting as mucha s some kids, they probably would have left alone, but since they were in the bowels they might as well fix.  We are hoping that now that this is all figures out, it will hopefully cut down on her vomitting. 

Zoe will not be able to eat for several days until her bowels "wake up".  She is doing pretty well considering everything she went through yesterday.  She is stating 100% oxygen on 1.0 litre- usually she is on 1/4 litre but for the day after surgery, we can't complain.  She didn't have to stay in a ventilator at all.  She is getting morphine boluses every few hours to help with the pain.  She is pretty sqirmy, I think because she is hungry, aches and has her hands restrained so she won't pull at her tubes.  Jason was able to hold her this morning.  We are being told we will have to be here for probaly a week or so, she needs to be able to tolertate her feeds again before discharge. 

Jason and I are both exhausted, but glad to have this behind us and ready to move on.  It's hard to see Zoe with more tubes in her, but as long as the new drugs work, it's all worth it. It's just so hard to have her look at you with those sad hurting eyes and know you can't explain to her what is going on or why she feels this way.  I just know she's thinking- what's going on?  Just a day ago I was bouncing in my johhny-jump-up and snuggling with Mom, and now I hurt and my arms are tied down.

The picture below shows Zoe this morning.  The plastic "Button" in her stomach is the G-tube.  The white cord and clamp up by her neck is the central line and the other tubes are IV Fluids and a catheter for urine. 

 we'll keep the website up to date as things change.  We will be in the PICU for at least 48 hours and then possibly transfered to another floor. 

This is a picture of Zoe the other day at home in our new studio!!!!!!

This is right before surgery while Zoe was mesmerized with the fish tank.

Happy April Fools day.  None of what I am typing below is a joke so not to worry.  Zoe's surgery has been rescheduled for the 4th time for April 15th.  So as long as she stays healthy these next two weeks, we will be rid of her NG tube and on to her new medicine in 2 weeks.  Zoe's has discovered the johnny jump up and LOVES it!!  I put her in it a couple weeks ago and she immediatley started jumping like crazy.  She got such a good jump going that I had to raise it up a couple links.  She is totally content jumping for a good hour or so.  She also has a  toy saucer that bounces which she also loves.  She's getting even better at sitting up on her own and if she is placed obn the floor she has figured out out how to roll over and over to change her position.  She is actually able to get her butt in the air and her arms up a bit so she can shove herself forward.  I wouldn't call it crawling but it is definetly the beginning of it. 

Zoe had another swallow study done on Monday the 30th for the first time since January.  She has stopped aspirating entirely and is able to guard her lungs even when she is gagging.  So what this means is that we get to start trying to feed her again.  We can try giving her breastmilk via the binky trainer or bottle at every feed, as much as she will take and we get to try solid foods three times a day. It is going to be a slow process since she's not used to any of this, but I think she'll take well to it.  After she is on the Flolan that should help even more because it will give her more enrgy since her pressures won't be as high.  She also got her first high chair on Monday so we can try out this feeding thing and she seems to love it.

 Last night, Jason, Zoe and I met up with 4 of the nurses from Legacy Emanuuel here in Seattle.  We saw Dona, one of Zoe's primary nurses, Stephanie, Leanna and Casey.  They are all going to school up here at the UW.  It was so great to see them, very special for us and they were of course thrilled to see how much Zoe had grown and changed.  We miss everyone down there in Portland so much. 

Zoe is now sleeping through the night-  YEAH!!  It only  took 7 months.  We have also been able to cut out another feed, so we only have to feed her 6 times a day and not in the middl of the night,.  So much nicer for all three of us.  I actually get 6-7 hours of sleep instead of two stretches of 1.5 hours each. 

Jason and I are almost done with the studio. The contractors are just finishing up the upstairs and so hopefully by mid next week we will be moving everything in.  I can't wait to get Zoe's nursery together and the rest of the place.  It has been 8 months since I have lived in my own space.  It will be nice to be able to be together the three of us.  We have had a great time with my parents and I love that Zoe gets so much time with them, but we're ready.  Besides they need to reclaim their house-  there is Zoe stuff everywhere.  I'm going to miss seeing them every day and watching Zoe with them.  They are always happy to babysit. Good thing they just live down the driveway.

We got some updates on some other NICU babies that are having some health issues, so just a request to keep them in your thoughts and prayers along with Zoe.  They have all fought so hard to make it this far,  they are all amazing beings.