I had a great day just working on feeds with Zoe. OTPT came inat 8:00 AM and showed me some tricks to get Zoe to loosen up her  mouth muscles to make feedingseasier.  They also showed me how to do a baby massage that will hopefully loosen her up a bit more.  Zoe dod great with feedings today. She took 20-30 ml from a bottle several times today and she also did another hour of breast feeding.  Hopefully we are getting somewhere.

Jason's Grandma Carol and her beau, Ray, stopped by today to see Zoe and Carol was able to hold her for a while-  just what every great-grandma wants to do.  It was great to see them,  know it's been tough on everyone not to see Zoe as much as they would like to.  My Mom came into town tonight for a few days.  It's so great to have her here and she doesn't mind because she gets to hold Zoe a lot.

Today was an enlightening day for Jason and I.  The ECHO that was performed yesterday showed that ZOe still has a large amount of pulminary hypertension.  This is kind of what we have been dreading, it's been sort of looming in the distance for a while.  It's one of those things that if it doesn't correct itself can cause cardiac failure later because of all the pressure put on the heart.  The doctors don't think this will be the case at all with Zoe, it's just that her lungs still need more time to grow and mend themselves.  So it's a definite now that she will be going home on oxygen and probably be on it for several months, probably around 6 months or so.  At first I was really upset about this only because we thought she was doing so much better with her hypertension.  Once we had time to sit and think about it, it all made sense.  Zoe's surgery was only a month ago, so her lungs have only been being used for 30 days and they weren't very healthy lungs to begin with. To expect them to be all healed in a month is kind of ridiculous.  The hypertension should go away once her lungs get stronger and the veins open up and relax a bit more.  The up side about all this is that we get a monitor on her at home.  This will make life alot more relaxed for Jason and I just to know that she is getting the amount of oxygen she needs at  all times.  The doctor drew a sort of graph of where Zoe started on her oxygen needs and where she is now.  Basically it is like she started at the top of a giant mountain and has made her way down fairly quickly but now has the long flat trail to hike out to get home. 

Zoe had an amazing day in terms of feedings today.  She breast fed for 60 minutes at 5:00 in the evening.  She probaly only got 35-40 ml but she didn't tire out all which was really encouraging and she seemed to love it and not have any aversion.  She also did several bottle feedings today.  Zoe also got another bath today which this time she loved.  It's getting easier each time with a few less cords and tubes.

So the new plan of attack for getting Zoe out of here is to ween her oxygen flow as much as possible while keeping her on 100% oxygen since that is what the tank at home will have and to concentrate on her feedings. We are still hoping we can get her to take her feedings herself and not need a G-tube, but we'll see what happens.  Either way, we are so proud of her and how far she's gotten in just 2 months.

Zoe is 2 months old today!!  And so how are we celebrating?  Jason and I are going to take off to Seattle for the day to go watch the Seahawks.  I'm still not sure how I feel about this.  I am very excited about spending the day just Jason and I, but sad about leaving Zoe.  I haven't been more than 15 minutes away from the hospital for more than 3 hours in the whole 2 months.  The nurses all think it's a good idea to get away for a bit as does my family, I just felt guilty.   They keep telling me I have the best babysitters in the world (and the most expensive).  Jason and I stopped by to see Zoe around 6 AM before we left, thank goodness she was asleep or I don't know if I could have left.

We had to swing past our house to pick up the tickets so we were able to stop and see my parents and brother and sister in law at the church before we caught the ferry.  My nephews, Cruz, Max, and Bodie were so excited to see me,  it was a surprise visit.  They kept asking where Zoe was and gave me some great hugs.  It was also great to see all the people at the church who have been praying for Zoe all along.  It means so much to Jason and I.

We had a great time at the game, even though we lost, but were more than ready to come back to Portland and see Zoe.  The weather was beautiful and it felt so good to get fresh air and sun for a while.  She was going to have an ECHO today so we wanted to know what the results of that were.  I manged to only call twice today in the 14 hours we were gone- I'm very proud of myself. 

When we got back to the NICU around 8:00, Zoe was crying a bit because the nurses were doing her usual cares and feedings, when she saw us she immediatley stopped crying and her eyes got so big.  She just snuggled up with Jason and was so happy.  We only stayed at the NICU until about 10:00 because we have to be over here early tomorrow for and infant CPR class.

Zoe had a great oxygen day today. At the beginning of the day she was at 9 on the flow pressure and by the end of the day she was around 5.  Usually this would have been a really fast ween for her but for some reason she just kept stating 98 on her oxygen levels and so they kept turning down the pressure.  I think it was because Jason was here and she was so excited.  It was a bit nerve-racking watching them turn down the pressure so quickly only because it has always taken Zoe so long to do things that I keep having flashbacks to when we tried to ween her too quickly before and she had a setback.  But that doesn't seem to be happening.  She also got her 2nd vaccine today and did great, she only made a sad scrunchy face for a second.  She wasn't too interested in feedings today but she did take 15-20 ml from a bottle a couple times today. 

Jason's Aunt Karen and cousin Jamie came down to see Zoe today and got to hold her for a while.  This time Zoe managed not to threw up on the visitors (sorry Fried and Mom).  Jason and I are going to tear ourselves away from the NICU tomorrow and drive to Seattle to go see the Seahawks play Green Bay.  I haven't been away from the NICU in 2 months so I'm pretty nervous about leaving Zoe.

More lessons in patience with feedings.  Zoe had a rough day on Thursday with feedings, all she wanted to do was sleep.  She was however doing great with her oxygen so I tried not to get to frustrated.  The nurses and doctors always said this was the frustrating part- when she is almost well enough to go home, but she just can't master the feedings.  She was noce and alert most of the day which was fun and she got to have her picture taken with Stacy, one of the night shift nurses, who brought Zoe back her own Disney princess ears from disneyland. 

Friday went a bit better in terms of feedings.  OTPT came at 8:00 this mornig to work with ZOe on feedings and tried using a different sort of bottle with a nipple called a Haberman nipple.  It is designed especially for kids with feeding issues.  It has a shorter nipple and a valve that controls the flow.  It also responds to Zoe gumming at the nipple rather than sucking at it.  Anyways, she seems to love it.  She has gotten 15-20 ml of milk each feeding today which is a record for her.  I think we are going to stick with trying this bottle thing for a while since it seems to be even easier for her than breast feeding and since I have a 2 month supply of frozen breast milk.  Whatever is best and easiest for Zoe is what works for us. 

Zoe also got her first vaccines today, she's a big 2 onth old now.  Her oxygen also got weened a bit more and it didn't seem to phase her.  Jason was amazed to see how much more coordination she has achieved just in the 5 days he's been gone.  She does get cuter every day, if I say so myself. 

 

Business as usual days for Zoe and I.  We are still trying to make progress on the feedings, it gets a little better each day.  Zoe gets anywhere from 4-16 ml each feeding by breast, but is now getting 80 ml each feeing via her feeding tube, which is just about where she needs to be for the average 2 moth old who is her weight.  Her PICC line was removed yesterday so now the only wires attatched to her are the moniters, the nasal canula and her feeding tube.  It's is so much easier to hold her and move her around.  Her morpine was also discontinued today, so hopefully she can stick with that and not have any more withdrawl syptoms.  The doctors are starting to tallk about her coming home which is very exciting.  If we wanted to deal with her being on oxygen still and a feeding tube we could probaly go home even sooner, but Jason and I are both a little leary of that so we are going to give her another couple weeks and then reevaluate where we are before deciding what we feel comfortable dealing with at home.  The slightly sad  news we got yesterday is that Zoe pretty much needs to be on lockdown for all of the winter months since she is so succeptible to illness.  We were told that she really needs to stay home almost all the time, the grocery stores, no malls, no other kids, etc.  Basically this means Jason and I don't get to throw our big Christmas party this year, we are both very sad about this, we had been looking forward to the party to show off Zoe.  Not that you all won't be able to see her, but we will just have to be super careful that she is around no one that is sick, everyone has to wash their hands and most likely little kids won't be able to hold her or touch her.  The doctors are also reccomending that anyone that is around Zoe have a flu shot-  not to tell you what to do, but....   Zoe has been very snuggly lately, if she senses I am anywhere near her she will get fussy until I pick her up-- not that I mind at all. 

The picture below is Aunti Friedie holding Zoe on saturday,  I just got the pictures emailed to me today.

What we thought was going to be a busy weekend with company turned out to be rather mellow.  Jason got into Portland around 10:00 Friday night after a horrible drive with the rain and rush hour traffic.  Zoe was very excited to see him and promptly forgot all about wanting to breast feed or bottle feed. We spent the whole weekend with her being fussy any time we tried to feed her.  The second I would lay her down she would start crying.  The second we gave her a bottle she would drink about 4-5 ml and then throw it all up.  We knew this was going to be frustrating, I had just thought we were off to a good start.  The aunties, Julia and Fried, came to see Zoe on Saturday.  They were so excited to hold her finally.  This was the 4th time they've come to visit and the first time to hold her.  Zoe slept calmly for Julia and then decided to throw up some on Fried,  Oops.  So far she's managed to throw up on all the visitors but not me.  The 4 of us took a little time away from the hospital on Saturday night and went to a greek festival which I think we were all expecting to be a little affair and turned out to be a huge shindig with hundreds and hundreds of people. we had a great time eating greek specialties and people watching. 

Sunday was a big day for us.  We got moved to the other side of the NICU-  level 2.  I thought we would never get here.  Not only that but Zoe got a private room with a view.  Yeah for me!!  We have now hit the two extremes of the NICU.  It's really great to have the extra space, now that she is 8 weeks old and we are able to hold her more there is a lot more interaction and of course it's great to have the room and privacy for feeding purposes. 

Today, Monday, Zoe had a great day.  We started off wrking on the feeds again and today I'm trying a different tactic.  Zoe is supposed to get food every 3 hours: at 8, 11, 2, and 5.  However when we try to stick to that schedule half the time she is asleep or just plain worn out.  SO today I tried snuggling with her and then feeding her whenever she was awake.  Usually this meant that we would start about 45 minutes ahead of her feeding schedule.  I woudl just hold her for a little while and then give her the passifier (which she loves) and then try breast feeding and then back to the passifier so she didn't get overwhelmed by the feeling of milk in her throat.  This tactic made a world of difference.  SHe took 12ml, 15 ml , and 8 ml and the 3 feedings.  Which is a huge deal for her.  Last week we were doing good to get one feeding a day be remoteley successful.  Who knows whther or not this will all work for tomporrow but for today it's great.  Zoe is also off the high-flow oxygen and onto a nasal canula with low- flo-  we're getting there!!  She also is almost off her morphine.  I think they are planning on trying to discontinue it tomorrow.  Her TPN and Lipids( the IV fluids that have been sustaining her for the past 8 weeks) also got discontinued today because she is now able to get the caloires she needs form breast milk.  Dr. Baker said that we could start looking at going home in a month, give or take a week.  That is the first time we have had anyone give us a vague date.  Very exciting!!  Right now the concentration is all on getting Zoe to feed and to slowly ween her oxygen as she grows more capable of breathing on her own. 

Just another snuggly day with Zoe.  It's so odd to be having these days with nothing much to report.  We had so many traumatic days for such a long time, that to have these perfectly ordinary days  almost scares me sometimes.  Anyways, Zoe and i spent the day as usual lately, snuggling and attempting to work on feeding.  She does good when she's wide awake and not so good when she's sleepy.  She had another session with the physical therapist today to work on limbering her up and also working on her sucking technique.  She is up to taking 50 ml evry 3 hours and her air pressure was weened to 1.  So hopefully, we should be off the high-flow canula and just on to a regular canula in a couple days. 

Jason is on his way down right now (probably stuck in traffic) and can't wait to see Zoe.  I'm sure she has changed so much in a week it will be great to see what differences he sees in her.  The aunties (Julia and Fried) are coming down tomorrow to see Zoe and Ashley (Jason's sister) might be down on Sunday, she hasn't seen Zoe yet , so that will be exciting for all of us. 

Today was a totally perfectly mellow day.  Zoe and I just worked on feedings some more, some went well, others turned into a sleep-a-thon for her.  But at least it was all quality snuggling.  My mom had to go back to Bainbridge today but it was lovely having her down here for a while and spending time with her- and she of course, loved every moment with Zoe.  Jason will be down tomorrow and can't wait to see how much she's changed.  She looks older every day.  Zoe is now up to 45 ml on her feedings every 3 hours and the plan is to leave her there for a day or so to give her stomach a chance to stretch since she threw up twice yesterday (on my mom both times).  Right now she is just lazing away in her crib, mesmerized by her mobile.  I can't remember if I mentioned the other day or not, but Zoe passed her hearing test in her right ear and was squirming around too much to check the left ear, so they will have to do that later.  This is a huge releief to us because one of the side effects of being on ECMO and getting antibiotics can be hearing loss.  It's one of those things we'll have to have rechecked at about 6 months, but for now all is good. 

Zoe is growing by the day,  Today she started to smile!!  I'm not sure whether or not it was from gas or just because, but it was definetly a smile.  We also worked on the breastfeeding thing some more.  She had zero intrest in trying this morning only because she was sound asleep.  By 2:00 we were a bit more successful and she got 8 ml and this evening was great. She sucked away the whole 30 minutes and got 12 ml.  A long ways to go from the 75 we need to be at, but at least it's a start and a really good one for a baby that has every right to want nothing to do with it.  Zoe is also getting really good at holding her head up on her own, she really needs very little neck support these days, again very impressive for a baby that has not moved much for the last 7 weeks.