March for Babies

Tuesday, May 02, 2006

35 Weeks

35 weeks gestation, Friday she will be 11 weeks old.
A time line:
3/30 - Started giving Azure fortifier in her milk to boost the calories she is getting.
4/5 - Azure is taken off all feedings and put back on IVs due to a bowel obstruction. Symptoms included gray/clay color stools, green bile, horrible apnea and bradycardia (episodes of not breathing and heart-rate dropping) and a highly uncomfortable baby. I ask and am told that it is highly unlikely that the bowel obstruction came as a result of the fortifier.
4/6 through 4/19 - Long slow recovery.
4/20 - Finally back on full feeds with straight breastmilk!  Go Azure!
4/21 - Azure gets immunization shots so we expect her to be uncomfortable for a couple days.
4/22 - Started giving Azure fortifier again. Oxygen saturation levels low, needs to poop!
4/23 - "Low Stim" day, no holding, baby uncomfortable and struggling to poop!
4/25 - Green bile again, stools "clay" color again.  They said she hadn't "declared herself" as having a problem yet.  T said, "Well I am declaring for her!"  She is switched to straight breastmilk and given a complete liver workup. Test results all come back normal.  The only difference is the fortifier.  They have yet to concede the fact that I was right all along about the fortifier.
4/29 - Stools coming around to normal color again, no alarms for apnea/brady episodes, mostly room air (requiring less oxygen).  They talk about adding a fortifier back (different one this time) since she hasn't gained weight this week.
5/1 - They give Azure time sans cannula to practice breathing on her own.  She does well as long as she is asleep but when she wakes up needs a bit of a boost.  Things, in general, are good.
5/2 - Azure gains 45 grams!  She is 3 pounds 5 ouces (1530g)!
Hmm.  Looks like the parents were right! I trust their medical judgements and am so very appreciative of their life saving efforts.  The problem comes in when they have people watching her that haven't been there in a week or "new" people who have never been assigned to her before and don't know her traits.  They need to listen to the people who are there every day and know her very very well, us.  I have also learned to write things down. What have they changed?  When did they change it?  How was she acting before compared to after the change? 
In other news:
As a family we raised over $2400 for the March of Dimes Walk America last weekend!  Yay!  Most of that was my mom's doing but we got the word out and there were several nurses from our NICU walking too.  Next year we will have more time to prepare and will hopefully be in a better place in our lives to be able to do more fundraising.


ThreeBees said...

Congrats on the great fund raising and great news about the growing Azure. Thinking of you both all the time. . .

Much love.

Miss W said...

Keep advocating for your little girl! Frequently the neonatologists and nurses don't want to believe the parents could be right on something they've never seen -- we had a similar situation (no pooping when taken off of a med for reflux, TWICE, and each time NEC was suspected -- both times we fought to get back the reglan and were proven correct) so I know how important it can be to watch everything they do, keep good records and keep fighting the good fight for your baby!

You're doing great, Blue! So, so proud of you all.

Anonymous said...

So hard to believe 11 weeks old and 3 lbs 5 oz. Thinking of the three of you all the time. Glad to know that the positives are prevailing. Don't know how you do it all. mlkk

amy said...

Holy cow - that's a lot of money! Congratulations on being over 3 pounds, for advocating for you girl, for keeping on. There a many people out here hoping things keep going well.

Heels said...

I am so glad to read this update. I hope your sweet girl continues to thrive and fatten up!