Wednesday, June 25, 2014

Ups and Downs

We have had a rough couple of days.  Before I was discharged from the hospital, we heard several times, from several different people, that Ellie's stay in the NICU would have ups and downs.  She, and we, would have good days and bad days.  I will admit that she did so well last week and through the weekend that I was starting to think that the "downs" they talked about would simply not apply to her.  She was doing so well at progressing, faster than the doctors were anticipating, that all we had seen so far were "ups." We have quickly come to realize over the last couple of days how unrealistic my thought of Ellie not having downs was.  She is after all a premie, and as she continues to develop her journey will be more like the Little Engine That Could, instead of a jet streaming at a straight, steady pace to the finish line.

Our downs over the past few days have worn more emotionally on us than anything else.  Because all in all, she is still doing well.  She has had to go back on oxygen by nasal cannula.  The NICU physicians are still running tests to determine the underlying cause.  Today she is getting an x-ray to see if there could be fluid in her lungs.  If there is, they are going to stop her IV fluids because she is now getting enough breastmilk that she will not need them anymore.  The PDA (patent ductus arteriosus) she received indomethacin to treat could possibly take longer to close than they originally thought.  It also could be tugging on her pulmonary artery, causing it to not be as open as it should, and could also be the reason she is having a little trouble breathing again.  The biggest down has been the fact that  my post-partum hormones can, on a dime, throw rational thought out the window making things seem worse than they really are.  On Monday night, when we went to visit her, my post-partum hormones must have been in full swing.  We showed up to find her in clothes.  For about 30 seconds I thought it was so cute...and then all of a sudden I realized that this was the first time she had worn clothes and I was livid.  How dare they put my child in clothes without consulting me, or even asking me to pick out the outfit! It felt like a "first" that they had stolen from me. I pouted the whole time we were there about it.  Completely ridiculous?  Yes.  Entirely hormonal?  Of course.

Our ups over the past few days have been great ones.  On Monday morning, Ellie was moved to a smaller, quieter room.  They move the more "mature" babies to these rooms to provide more privacy to families.  It felt like such a success for us!  Even though she went back on oxygen, she gets to stay in that room :)  Ellie has done a great job progressing through her increases in feedings.  They are still increasing her by 2mL every 12 hours.  She is now up to 24mL!  Now that she is 33 weeks, as soon as she shows enough signs of her sucking reflex we can try breast or bottle feeding.  She is starting to show signs, so we are hopeful that the nurses will see it enough over the next week or two and we can start working on that goal.  Even though it made my hormonal self so mad at first, it actually is a really good thing that Ellie is ready for clothes.  It means that she is progressing in controlling her own body temperature.  The bed she is currently in is called an isolette and it temperature controlled.  Each day she has been in the NICU they have been slowly turning down the temperature to teach her to regulate her own temperature.  Soon it will be turned down as low as it can go and she will be ready to switch to an open crib!  I also cannot tell you how much I love having my mom up here with us right now.  She is such a great support to us.  She is so good at helping us stay positive, and taking care of me while Wesley is at work during the day.  I also have loved watching her with Ellie.  I know my transition into motherhood is going so well because I have the best roll model in the world!

We are so ready to take our little girl home!  I can't tell you how hard it is to be patient.  Each time we go for a visit, it gets harder and harder to leave.  She has completely stolen our heart.

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