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. 

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.

Another great day for Zoe and I with some big big changes.  First, Zoe was finally moved from her location in the high acuity NICU to a spot in the general level 2 NICU.  we are now part of the GP (general population) as Jason calls it.  I had gotten used to my big space in the back of the NICU but am happy to give it up because it means Zoe is finally getting somewhere.  The nurse and doctor today actually said the sentence "Zoe is Stable" , I almost felt like crying it was such an exciting sentence to hear.  Zoe's other big milestone today is that she got her first breast milk via an IV feed.  It's such a big event, now we just have to hope she can process it allright, since her organs have been in the wrong place for so long it can sometimes take some time for things to digest properly.  I was able to hold Zoe again today for a couple hours through which she partially slept.  She has been awake so much lately- just making up for lost time I guess.  Jason and his friend Jeff will be down here in an hour or so and then it's Jason's turn to hold Zoe and catch up on all the big events.  Dr. Huston is talking about possible trying to re-extubate Zoe tomorrow and move her to the C-PAPP since she's doing so well.  Hopeully this go round is more successful,  but like all things in this journey...one hour at a time.  For now I'm enjoying the moments.   

Today was a great day.  Zoe is really comfortable back on the ventilator yet is on pretty low settings so no real setback at all.  She was awake almost all day from 7:30 in the morning till right about now (2:00 am)  She took a few little naps but other than that she seem so fascinated with life, people and noise so she just won't close her eyes.  She isn't even agitated by the tubes,  the doctors were able to continue to ween her morphine, she hasn't yet had any signs of withdrawal which is really great because she's been on it so long.  Zoe had some company today from Seattle,  our friend Sara, her daughter Lily, and her mom, Mary.  Zoe was wide awake to entertain them.  

This evening was another landmark for Zoe and I.  I got to hold her skin to skin for 3 hours.  It was such a great feeling.  She just smells so yummy like baby and she just looked at me the whole time.  Up until now Jason and I have just been able to hold her in our arms on our laps, but tonight they laid Zoe on my chest on her tummy,  it was so amazing to feel her little heart beating and listen to her be so content.  Just a really perfect day for Zoe and I.  

She is definitely  a character.  She has her funny scrunchy faces and loves to talk with her eyebrows.  She even started to put her thumb in her mouth today which is a great sign considering all the feeding issues we may be in for.  She just wants to take in the whole world right now.  I think she has been immobile and asleep for so long, everything is incredibly interesting and stimulating to her.  I love watching it, I can just sit and laugh watching her get excited by the little things.

Today's has been a roller coaster ride for the three of us.  Around 1:00 AM the nurses decided to extubate Zoe (take her off the ventilator and remove the tube that goes into her lungs).  I was over at the NICU when they did it because I wanted to hear her little cries.  Jason and I have never heard her make any noise since she has been intubated ever since she was born and the tube goes between her vocal chords.  They placed Zoe on a nasal canula which supplies oxygen through the nose but doesn't provide the pressure to the lungs that the ventilator does.  She did really quite well for a while,  she was on a higher oxygen flow but that was to be expected since she was being forced to do all the work that the ventilator had been doing.  She cried a bit when they moved her around, it sounded like little raspy meows.  She did really pretty good over night but by the time I came back in the morning around 9:00 she was pretty worn out from her lungs working so hard.  The doctor decided to put her on a different machine called a C-PAP, which provides pressurized air through the nose.  She wasn't able to keep up the good oxygen levels that they wanted to see so it was decided to put her back on a ventilator around 12:00.  As much as I don't want to see her on a ventilator it was a relief to see her back on it because she looks so much more peaceful and isn't struggling as hard.  She will probably be on the ventilator for several days before they try the nasal canulas again. I'm told it's not unusual for the first extabation to fail, just because it is so exhausting for the babies to breathe.  Her lung did collapse over the course of the several hours on her own, so it will take a day or so to get it inflated again.  The doctors and nurses still seem hopeful so we're trying not to worry too much. She did have to give up her big girl crib because of the ventilator, but I guess that's the lesser of all evils.  Hopefully she'll have a great night and keep resting.  

Zoe had another great day today.  The doctors were able to ween her off the nitric she had been on that helped expand her lungs.  She has been doing great on low settings on the ventilator and so the doctors are talking about taking her off the ventilator and removing the tube that goes into her lungs.  They might still do this tonight and if not tonight, probably tomorrow.  She would then just be on a nasal  canula that supplies oxygen and slight  air pressure.  I think she is so ready for this because she is reacting to the tubes down her throat more and more.  The doctors are also talking about starting her on a feeding tube within a couple days-  We can't wait!! 

Zoe is also graduating to a real crib tonight instead of the little cribette she's been in.  She's such a long baby (22.5")  her feet touch the edge of the crib if she's not all curled up.  She has been awake much of the day today with her eyes wide open.  She is one of those kids who when she sleeps she is totally asleep and when she wakes up it's instant and she is totally alert.  Jason got to hold Zoe again last night and as long as she's still doing great I should be able to hold her tonight.

The surgeon, Dr. Bliss, stopped back in today and was thrilled with how Zoe's recovering.  Yeah!!  So are we. 

Zoe's having another great day.  Jason and I are still in awe of how well she has recovered from the surgery.  Progress for her has been so slow in the past, we were really prepared for the worst, but she has been amazing. She is on way lower ventilator settings than she was on before surgery and is almost off the nitric again.  We have both been able to hold her twice already which is pretty amazing because usually it takes a while after surgery to get to the point the babies are ready to be held again.  The nurse also placed Zoe on her stomach last night for three hours and she did great.  They had tried doing this about a week ago before surgery and she wanted noting to do with it-  this time she loved it.  The next big step will be getting her off the ventilator and using a feeding tube,  hopefully we'll be doing this sometime later in the week.

14 September 2008 5:30 P.M. 

After one month of bypass machines, oscillating ventilators, more X-rays and blood gasses than you can count and lots of sleepless nights,  on her 1 month birthday on Friday, Zoe finally underwent surgery for her Diaphragmatic Hernia.  She did fantastic and is recovering nicely.  We were hoping to have the surgery done with a scope, but after the surgeon put a scope in he realized the hole would need a patch and so they decided to do an incision.  The surgery didn't seem to phase Zoe much at all,  she is back on regular ventilator support and on lower settings than she was on before surgery.  After doing more x-rays once the stomach, intestine and spleen were moved to there intended location, we were able to see that Zoe has about 2/3 of a lung on the left side that had been covered and compressed by all the other organs.  It still needs some time to learn to function as it should, but hopefully she'll get there.  It has been a long scary month for Jason and, but hopefully the worst is behind us.  Zoe still has along road ahead, she will have to learn to feed and that can sometimes take months depending on how much gastro-reflux they have and the aversion to swallowing from a month of having tubes down her throat-  right now that all seems like a piece of cake compared to all the machinery of the last month.  Jason and I had been prepared for the worst following surgery,  apparently there can be some really rocky days, but Zoe seems to have avoided all that.  She has a reputation around the NICU as a Drama Queen for wanting to do things on "Zoe Time" but so far it's worked.  The nurses and doctors all love her and are sure to check in with her every day even if they aren't in charge of her cares for the day.  The Portland hospital team is treating us all well and taking really good care of the three of us. 

Two days before Zoe's surgery I was able to hold her for the first time,  it was the most amazing thing ever.  Jason got to hold her the following evening.  And then today, two days after surgery I got to hold her again because she is doing so well they thought she was ready for it. Once again she did great. 

This is the very condensed version of the past few weeks,  if you want more details just let me know and I'll be happy to share.  My sister is continuing to update the website whenever she gets new photos so be sure to check them out.   http://zoehenry.shutterfly.com  

We are hoping in the next week to get Zoe onto a feeding tube and using an air support system that just goes into her nose instead of a tube down her throat from the ventilator,  I'll try and keep everyone posted as that happens.

Thank you again for all your prayers, love and support for the three of us,  It means everything to us.

Love, Shannin. Jason, and Zoe