Update on NiNi

Hello to all! We have been home for almost 3 weeks...and life is beginning to feel semi-normal. The first 10 days were ROUGH. NiNi wouldn't sleep, cried inconsolably for 72 hrs, and I was past-exhausted...then I figured out she was having withdrawal symptoms! The taper schedule she was on was just too fast for her...so we adjusted her meds (after talking to the docs), and she was a different kiddo. The sleep thing has improved. She would just panic upon awaking, shrill screams and tears...gut-wrenching to watch...I have to think it has something to do with being moved around 8 times BEFORE I received her...never knowing WHERE she would wake up. Now she will nap and sleep in her crib, which is a big help.

She has to be fed every 3 hrs...she isn't on the height or weight charts yet..but, she HAS gained 2#! :-) and grown 1.5 inches!! Her pediatrician is impressed! She is filling out a little, doesn't look sickly anymore. We started cereal this week, NiNi isn't really impressed with that just yet.

Her first cardiology appt went well. The echo showed that the Right ventricle is already smaller than the Left! So her heart is remodeling nicely. She still has pulmonary hypertension (high lung pressures), which is why she is on oxygen at home...the hope is that the lung pressures will decrease, and she will tolerate being off oxygen. If that doesn't happen, we will switch to meds so she doesn't have to be tethered to a tank all the time. Over the next few months, we will be weaning the lasix and ativan...she finished methadone this weekend, and is tolerating it okay so far.

We saw the kidney docs also; they feel that the last urinary infection was a contamination, since NiNi was asymptomatic...so she doesn't have to be on long-term antibiotics anymore!! Yeah! They will follow her for a while, just to be sure...but feel pretty confident that she will be okay. Her retention seems to be resolving on its own, too...we had wondered if it was a learned response from the orphanage. Not only are the babies taught to void on command, they only got diaper changes on a schedule...so you would learn quickly to hold it for as long as possible. Now that she feels confident that I will keep her dry, she voids regularly, in good amounts...that will also decrease the likelihood of another infection.

Early Intervention made contact this past week, also...yep, nothing but appointments and contacts the past 3 weeks...they will be coming to see NiNi in another month or so, to start physical therapy and whatever else she needs to help her catch up. She can hold her head up much better now, but still bobbles after a while. She is VERY flexible, lying on her back, but when upright, those legs don't have tone/resistance. She spent time on her tummy today, for the first time. Initially, she was thrilled, but wore out quickly. :-)

She cut her first tooth on Saturday! :-) She's been drooling and chewing on EVERYTHING for a few weeks, but the doc didn't think she'd actually get teeth for a few more months. Go Baby!

It is still incredible to me that this precious baby girl is MINE! She is such an amazing little person, and watching her personality unfold is just fabulous. She is SO sweet; she smiles all the time, even in her sleep. She wrinkles her little nose up when she smiles, and wiggles and moves all 4 limbs. She is babbling, and was singing in the car yesterday. She loves to cuddle, and requires a lot of snuggle-time. She maintains good eye contact, and pats my face with her little hands...Yep, I'm totally in love with this kiddo!! :-)

My first mother's day was quiet and lovely. Baby napped quite a bit (teething is hard work), so I had the opportunity to nap also! I am still exhausted, and the 3 hour feeding schedule doesn't allow for much sleep...

I will post some pictures soon. Y'all won't believe the difference a couple of months can make.
To everyone who has followed this journey, and kept us in prayers- thank you!! I think this has truly shown the power of prayer. I am SO glad to be home, so grateful to have a daughter that is pink and healing and happy and thriving...

Also, a BIG thank you to Gina, for her blogging these past 2 months. I truly appreciate all your work, it turned out great! :-)