Undoubtedly, the past 30 days have felt the longest out of any month I have endured in my 31 years. Our persistent faith has been challenged by every emotion imaginable, but continued unwavering knowing our beautiful Emerson Claire is in the best care and the prayers of so many friends & family are being answered with her simplest daily feats.
31 days ago, I was a pregnant mother fresh off bedrest overjoyed to be reunited with my 14 month old when so quickly everything changed with the feeling of pain, the sight of blood, and the knowingness that a new chapter was dawning. Although just entering our third trimester clocking in at a mere 29 weeks to the day, quickly our family of three became a family of four -- although the four of us have yet to be together. My daughters have never slept under the same roof, and we have already "celebrated" so many family holidays without our sweet Emme - my dad's 60th birthday, my 31st birthday, our Anniversary, Thanksgiving... I say "celebrate" as we merely acknowledged each holiday, giving the necessary card and cake but feeling too guilty to do anymore with our hearts ticking away in the NICU with our littlest Allen gal. My February 2016 baby was born in November 2015... it still doesn't make sense.
Our preemie princess has been referred to as a "rockstar" by her neonatologists and daily her nurses comment on how "feisty" she is. Though quite petite, especially compared to her big sister Grace who came into this world at 39 weeks (10 weeks later) and 9.5 lbs (6 lbs, 3 ounces ... 3x bigger)- our little E has done her fare share of growing this past month. Born at 29 weeks weighing just 3 lbs 5 ounces, for the first two weeks she dropped a significant amount of weight as many babies do- hanging out in the 2 lb club - but fortunately she has slowly and steadily gained 5-40 grams a day, now weighing 4 lbs 2 ounces. I must admit, I find it curious how NICU staff still refer to E by her gestational age, i.e. 33 weeks, as opposed to 4 weeks/1 month old - while I understand it in theory, the reference has me envision a science project growing in a test tube as opposed to a thriving baby kickstarting life with a ferocious appetite for what lies ahead...
So, what does lie ahead? While E is steadily making progress and a month in the NICU has seemed like a very long time, our family still has quite a journey ahead before we are all united in our new home. The key items the neonatologists are scoring Emerson on are: temperature regulation, getting her A's and B's in order, and being able to feed independently. Emme is still in an isolette as she has been struggling to maintain her temperature- now that she is over 4lbs, she is theoretically at a weight where they can put her in an open-air unit, but unfortunately we have had too many dips recently - ideally in the next couple of days we can consider a move. The Apnea and Bradycardia episodes is another area she is still struggling with as she matures, but fortunately we are on track, with fewer sessions needing actual stimulation. The doctor yesterday took her off caffeine, just to try, in hopes she can self-regulate soon but too many dips meant she is back on it. Finally, the big ticket item is graduating from the gavage feedings to breast and bottle feeding.
Now that Emerson is 33 weeks, they will begin scoring her on readiness to breastfeed. While she isn't yet waking for each of her feeding sessions (every 3 hours, fortified breastmilk by intranasal feeding tube) she has been showing signs of rooting and will suck her pacifier. One note of interest in my work with IBCLC lactation consultants - a common theme was how anti pacifier they are - but we have actually been training Emme to suck by using a pacifier as the neurons in her brain have yet to develop (usually around 34 weeks) to teach her to suck, breathe and swallow at the same time.
We are kicking off a period of "recreational breastfeeding" these next few weeks where she will continue to get her feeds through the gavage but will spend more time trying to latch and take bottle feeds. I get to move back into the hospital (my home away from home ha ha) this week Wednesday through Friday for 48 hours of continuous "protected breastfeeding" - kind of an odd term but we shall see how it goes. I really hope in the coming weeks we can move on from the feeding tube-- while I am impressed with her maturing coordination and ability to pull her feeding tube out almost daily, it is painful to watch them reinsert it and see her writhe in discomfort.
My milk supply is fortunately well endowed, pumping about 48-60 ounces a day (usually with a precocious toddler who finds it hilarious to push the buttons and adjust the CPMs and suction while mom squirms in pain ha!). While still emphasizing hind milk expression, I have an extra 1000 ounces or so of breastmilk frozen at this point so for Christmas I asked Santa (Amazon) for a deep freezer for the garage to store some surplus and have begun the process of banking donations. After learning about E's NICU neighbor the other day, a beautiful little girl with an amazing head of hair who had lost her mother in childbirth and was going to be raised by her compassionate grandfather - who asked me a million question about bottle warmers and binkies - I knew I was meant to help other preemie caregivers by acting as a breastmilk donor to wee ones in the NICU who otherwise wouldn't have an opportunity to be fed a mother's milk. E is now consuming 39 mls (a little over 1 ounce) a feeding at this point, through a tube and down from an hour to just 45 minutes - these changes happened the past 24 hours though so awaiting to see how she metabolizes the higher amount in shorter period of time.
Being a NICU parent also means coping with the anxiety of test after test. We are eagerly awaiting results of her eye exam which was done last night (they schedule it for 12:30am - odd, right?!) The exam has me nervous as preemies born before 31 weeks have significant risk for retinopathy - which causes abnormal blood vessels to grow in the retina, resulting in blindness when the retina detaches from the back of the eye. Far more common in lower weight babies (under 2.5 lbs) we are educating ourselves on potential treatment options if we must go down that road. The nurse admitted it was a tough and invasive exam and E was pretty exhausted still when I arrived at 4:30am. From here on out though, most developmental delays will be tested for over the next 5 years - so our family will have an ongoing journey working with therapists to get her up to speed by kindergarten.
Remaining positive has been a conscious effort, and one that is not always successful. On days that I fail, I fall asleep (for 90 minutes at a time) in a ball of anxiety and frustration - yet usually find peace as I walk kellydog under the starry sky before I head in to the NICU for Emerson's early morning feed. Yesterday I witnessed two shooting stars in the sky above, and without hesitation those wishes were made for E's continued health. Admittedly, I am guilty of pity parties as the days carry on slowly and I wallow that my daughters have yet to meet each other, that a month has gone by and we don't have any photos of our sweet girl other than on our cell phones and that we haven't shared any real "firsts" yet - as she hasn't even been outside. When we moved to Palo Alto, I was blessed to have met some other mothers who were also due end of January/early February. When I saw them last week, I must admit a pang of jealousy rang through my body seeing their growing bumps - it is hard to quiet the voice wondering why my body couldn't carry her safely longer. I should be pregnant for 7 more weeks still. The blessing of 6 friends in the Bay Area giving birth in the month of November was bittersweet as we were overjoyed by their arrivals - but when I think of their families, a tiny part of me also yearns for the day when I get to spend time with my new daughter just the two of us - not under the supervision of nurses and doctors and away from harsh flourescent lighting and beeping machines. Nothing has brought me as much joy as receiving everyone's Christmas cards- a beautiful touch point of smiling faces whom have supported our family throughout - but my heart does break a little as I open each envelope and acknowledge we have no family photo or Christmas card this year as the four of us haven't been together.
On the home front, we are all moved in and Grant has been working diligently to make our house feel like home upon miss Es discharge. Her nursery is in progress- we went with a gold and coral theme. Grace has been sick with a little cold the past few days so we have had to be extra diligent about sanitizing everything she touches -- Purell stock should be skyrocketing with our overusage! Grant's hardworking in making it home has me dreaming of the day we are all under one roof... Soon enough!
Love be from our family to yours!