More big news for Zoe-  every day has been so exciting lately.  Last night around 11:00 Zoe and I had our first attempt at breast feeding.  It was amazing that she instinctively knew what to do.  I wouldn't say it was successful in terms of her getting any amount of milk, but she knew she was supposed to nuzzle and open up.  She tried at sucking and swallowing but it will be one of those things we will have to work on with her.  Becasue she has had tubes in her throat for so long, her tongue naturally wants to curve backward not around, but she does stick her tongue out and lick.  The nurse and lactation specialists are thrilled that Zoe is doing this at all. Apparently alot of babies with CDH's have complete oral aversion and want nothing to do with feeding.  Zoe will haveb to work at it, but for right now she likes nothing better than snuggling in and falling asleep at my breast.  In fact that is what we did all day today.  She would try feeding for a while and then fall asleep for a while and then wake up and try again.  Right now, evryone just wants her to find it an enjoyable process which she seems to.  In the mean time she is getting 15 ml of breast milk via a nasal feeding tube every 3 hours.  She also gets a bag of nutrients constantly streamed into her PICC line, this is what she has been being sustained on so far.  As she gets more milk, her IV fluids will be decreased.  She will be given an additonal 5 ml of breastmilk every 3 feedings (12 hours) as long as all goes well and stays down.   How long we have left to go is anyone's guess.  It's really all up to Zoe at this point in time, the sooner she learns how to eat and can breathe comfortably on her own, the sooner we will be back home.  She probably has about another week or so to go on the high-flow nasal canula and then would most likely be onto a regular nasal canula if she needs it.  Learning how to feed will proably take several weeks, but who knows.  I'm figuring we have at least another month to go, but no one can put any date on it.  My mom (Nana) is coming to Portland tomorrow for a few days, she hasn't seen Zoe since surgery 2 1/2 weeks ago-  she's very excited because now she will be able to hold Zoe (grandchild #8) 

Zoe had her first bottle feedings today!!  Only 5 ml. every 3 hours but its a start.  She seems to do pretty good at it according to the nurses considering she has had two tubes down her throat for 6 weeks. It takes her about 20-30 minutes to drink the 5 ml. but by the end she seems to have the suck/swallow thing figured out.  She still has a pretty strong gag reflex but that should go away with time.  The nurses definetley have better luck at feeding her than Jason and I do just because they have all the tricks figured out- but we'll learn.  Zoe also go to spend some time in a swinging chair which she loved, it faced out at the NICU so she got to keep an eye on everything happening around her.  Zoe was doing so well, Jason and I actually headed out for a few hours and walked around the Rose Gardens and the Japanese Gardens because who knows how many more 85 degree days there is going to be.  Zoe makes these cute little squeaking sounds all the time, it's as if she is talking to us and making up for lost time.  She still is a bit of an insomniac but at least it means we get to hold her all the time now,  the nurses love it too because it means they get to hold her when Jason and I aren't here. 

Well, Zoe had made it onto the nasal canula as of 9:00 this morning.  She is one what they call the high flow nasal canula, which means Zoe is doing all the breathing work on her own but the oxygen that is supplied is humidified which makes it a bit easier for her to breath in and helps expand her lungs.  No more silly cap and tubes on the side of her face.  So far she has been doing great, it's been about 5 hours so far.  The doctors and nurses are just keeping track of how hard she is breathing, so far she's been great, but if it starts to catch up with her she would go back on the CPAP.  The surgeons were in again to check on her and are planning on trying feedings again tomorrow.  This means that the giant tube that goes into her throat would be removed and a much smaller tube would go into her stomach through which the breast milk in pumped.  Jason is holding her right now and is loving every moment of it. He was very relieved last night to see that Zoe still recognized her Papa.  Her morphine is being cut back to every 8 hours and she has done great with that so far as well. 

Zoe's other HUGE event today is that she got her first real bath.  The circumstances leading to the bath were rather entertaining in itself.   I had been holding Zoe and all of a sudden she made a sort of "urpy"  face and her OG tube (the tube into her stomach fro her mouth- Oral-Gastric) came out of her mouth a couple inches,.  I was about to call Donna, the nurse, over to help put it back down, when Zoe made  another face and the entire OG tube came flying out of her mouth and green slime came flying out as well.  I'm not sure who was more surprised me or Zoe.  She looked a little stunned at first and then really happy to not have a giant tube down her throat.  So needless to say, it was time for a bath.  Donna helped Jason and I get ZOe into the tub and she seemed to love it, she was a bit unsure at first but then seemed to really like floating in the water.  We got to wash her hair again, still can't tell if it is curly or not.  To make it even better, the doctors decided to let her try it withour the OG tube, so far so good.  She also got to sit in a vibrating chair for a while tonight in her crib which she also loved,  she was just a few inched from her mobile so she was able to touch it when it spun around.  She is getting very interested in tactile things, she loves Jason's goatee.

 

Zoe did great again today.  The doctors turned down her pressure to 4 on the CPAP and she had to have her oxygen turned up for about an hour to 35%, but then was back down to room air at 21%.  She's been a very happy, very awake baby today.  Her morphine ween has been going great, no withdrawl symptoms really to speak of.  About 12:00 today, the respiratory technicians came to change Zoe's CPAP contraption and to put her in a real baby crib. They took off all her air support and Zoe breathed on her own for about 20 minutes while they did all this.  She had great stats and oxygenztion.  She still wouldn't be able to sustain this indefinetley, but the fact that she could do it for 20 minutes is amazing.  Now that Zoe is in a real crib, I am able to hang her mobile- which she LOVES!!  She will lay and stare at it for hours.  I read her some children's poems today while she stared at the mobile-  happy girl.  Jason got down here this evening and was able to hold Zoe for abit before she had a coughing fit and had to go back in her crib.  She's now up to about 9 lbs 9 0zs, in case you're keeping track.  I bought her a little jammie outfit to wear today so she would look all cute for Jason (like she needs help being cute) and I bought a size 3 month,  it's a little big, but not by much. 

Yeah, another great day!!  Zoe was on room air all day with the help of a little pressure from CPAP. With allluck, tomorrow we should go down to pressure 4 for a day or so and then on to a regular nasal canula.  She is breathing great on her own.  In fact when they change her CPAP out she is not connected to any oxygen for a few minutes and she does just fine (for a fewmintutes anyways).  Zoe's morphine drip was discontinued today, so now she only gets a morphine IV every 6 hours.  So far so good, she has definetely been a bit more fussy today than usual, not in any pain, just more awake and more annoyed by the tube down her throat and the whole CPAP contraption.  She was awake almost all day so I was able to hold her for about 3 hours in the afternoon and a couple hours this evening.  She always seems to enjoy being held so much and calms down pretty quickly (until she gets a wet diaper- she hates that)!!   She started sucking on a passifier a bit today, she seems to enjoy it and it stops her crying, but we will have to work on the sucking part, she more pushes at it and chews on it.  Physical Therapy came by today and started working with Zoe on relaxing her muscles in her neck, hamstrings and back.  They were very happy with how strong she is and how much she kicks around but she needs to work at being able to relax her back shoulder muscles so she can bring her hands to center more easily.  Zoe and I played with a bunch of her toys today, she seems to love it and can really easily visually track things.  I'm still amazed by how strong she has gotten in theh 12 days since surgery, she's like a brand new girl.  She also got to put her first piece of clothing on today.  Melissa, one of the nurses, found a little pink snuggler for her to wear until Jason and I get some clothes down here for her.  I can't wait for the red sparkly shoes!!  

Another great day for Zoe.  she had a really good gas lab this morning, a CO2 level of 51.  She had rested peacefully all night on 21% air- room air with the added pressure from CPAP at level 5.  At around 12:00 today they turned down Zoe's CPAP pressure to 4 and didn't have to up her oxygen at all, which means she is doing much batter at being able to expand her lungs by herself.   She also doesn't look like she is pulling as hard when she breathes as she did a few days ago.  If she keeps all this up we will hopefully be able to try a feeding tube again next week some time and maybe onto a nasal canula by next week. 

I was able to hold her againt his afternoon for a few hours and she settled right in.  It's really nice to be able to move her around a bit more now that she doesn't have the tube that goes into her lungs.  She is a bit more flexible now and has a pretty good upper body strength.  I was holding her on my chest today and she was able to lift her entire upper torso and head and move them about 4 " to the left,  I was pretty amazed after watching her not move for weeks on end.  The physical therapy crew are coming to take a look at her tomorrow and start some exercises with her to get her a bit more limber. 

Zoe's morphine was also dropped to .1 today.  Down from .6 just 1 1/2 weeks ago after surgery.  She's done really well with the weening so far,  I've heard so awful stories about how long this canall take so so far I am really encouraged. 

Today started off a bit scary but turned around fairly quickly.  When I called over to the NICU around 5:00 AM I was told that Zoe's blood gass had come back at 7.4 and a CO2 level of 71 (rather high).  I was kind of freaked out becasue it had been so good the day before and Zoe had done so good all yesterday and all overnight.  Dr. Baker wasn't too worried about it, he saif that any blood gas drawn from the heel can have rather varying results, all depending on how squirmy or upset Zoe is at the moment.  All her stats had looked great and so Dr. Baker just said we would wait and see what happens after her 2:00 gas.  At 10:00 today the nitric was turned off on Zoe and she did great, it didn't even phase her at all. She had to have her oxygen turned up from 22% to 35% for an hour or so.  After an hour we were back down to about 28%.  She slept comfortable all the rest of the day, waking up occasionally to check things out. 

I was able to hold her again tonight for an hour and half skin to skin.  It's the best feeling in the world.  I can feel her little heart beating and hear her breathing.  I think I might  love it more than she does.  All in all, a great day for both Zoe and I.

A totally boring (in a good way) day for Zoe.  She is doing really great on CPAP.  She's sitting at about 30% oxygen and the doctors were able to durn down her nitric to 0.5.  Hopefully by tomorrow it will be off entirely.  Zoe just rested peacefully all day,  waking up occasionally to look around and then right back to sleep.  She had her best blood gas ever today.  It had a Ph of 7.3 and a CO2 level of 41, which means the carbon dioxide in her system is significantly lower and hopefully means that some of the shunting due to the pulmonary hypertension is slowly going away. We're keeping our fingers crossed.

Zoe is 41 days old today.  It's hard to believe it has been that long.  Some days it seems like it has flown by and other days seem like a lifetime ago.  When I got to the NICU this morning the doctors had just taken Zoe off the ventilator and had placed her on C-PAP and she was doing great.   The difference between the ventilator and the C-PAP is that the ventilator force Zoe to take  breath and keeps her lungs semi inflated and with the CPAP Zoe has initiate all the breaths on her own. It will keep a small amount of air in the lungs when she exhales so that getting them re-inflated isn't quite as much work, but other than that it is up to her,  it does also provide oxygen through a nasal canula, there is no longer a tube that goes to her lungs with oxygen.  It can be 24-48 hours sometimes before babies can start having some issues with the CPAP and sometimes may need to go back on the ventilator, but for now all is good.  They didn't even have to go up on her oxygen level and her gas levels before and after CPAP are identical which is a really great sign that her lungs aren't having to overwork and are keeping her carbon dioxide levels where they should be. 

She was a bit fussy today probably because of the inconvenience of the CPAP setup, her raspy vocal chords and the fact that they weened her Adavan (an anxiety medication) Once they put her Adavan dose back where it was in the morning she was fine and went right back to sleep.  She was able to cry vocally quite a bit today and already by the end of the day had gotten much louder than she was in the morning.  Her stats are fantastic and show that she isn't having to work to hard to breathe like she was the other day.  Even when she was being fussy, it didn't make her breathe harder, you could tell it was just irritation. 

Micah and Becca stopped by today for a bit and got to hear Zoe  cry, but other than that it was a nice quiet day for the two of us since Jason is back up in Seattle.  It's just great to see Zoe move on to the different stages of her recovery,  it all seems easier than the last thing.

 

Today was a fun day for Zoe and Jason and I-  and a very busy one. We had lots of people in town to see Zoe. Sara and Greg stopped by again with their daughter Lily, who we can't wait to have play with Zoe.  Jason's buddy Jeff was in town from L.A.,  one of my best friends Tamra and her fiancé Jorge, and my brother Micah and sister-in-law Becca all came to see us today.  Zoe was having a great really stable day again so it was perfect timing.  Dr. Huston decided not to try her on C-PAPP today but to give her another day or so since her carbon dioxide levels were a bit high and they had just started feeding her.  This was fine with me, because this way everyone can see how cute she is  when she's on C-PAP most of her face is covered.  Anyways, everybody got to spend a little time with Zoe and shower her with love-  I'm not sure there has ever been a more loved baby.  We all had a great dinner out tonight at Deschutes Brewery since Zoe was doing great and finally asleep.  She has turned into a bit of an insomniac, apparently a combination of the withdrawal from morphine and just being asleep for a month and now feeling like a month old baby.  It was great to have a bit of normalcy in the midst of all the chaos and uncertainty.  

Zoe's having some difficulty processing the breast milk which is not unexpected considering her stomach has not been used for 6 weeks and that her organs are still sorting themselves out.  They are planning on discontinuing her IV of breast milk tonight for a few days and just deal with Zoe's  respiratory issues.  Not a big deal, I'd much rather get all the respiratory things under control before stressing about feedings.