It’s September 23rd. Daddy is at work today so mommy has some time alone to catch you up since the last letter. Daddy’s been trying to continue to work while your healthy and growing so he can spend more time with you once you’re home. He can’t wait to have nap time with you and spend quality time with you and your sisters. While you’ve been here, we have missed out on alot of time with big sissys so we have a lot of making up to do once were all together again. We can’t wait for that!
Days have been long, the walls of this NICU seem to be closing in on us at times. It’s a bittersweet experience every day because we are SOO THANKFUL we get to be here with you day in and day out, we wouldn’t want to be anywhere else in this world, not even Nashville ha 😉 But coming to such a dark place (NICU babies like you have very sensitive eyes so minimal sun light and very dim lights are a norm to prevent damage to your eyes and reduce stimulation at this stage in their growth) every day with constant beeping and a world of unknowns can be heavy on our hearts. We are a month and a week into this life and we just can’t stop thinking about how amazing it will be to bring you home! (that’s if we had a home, but we will save that for another blog letter haha- the house saga continues)
Some days we wake up ready to take on the world and other days… we arrive at the children’s hospital…park… and sit in the car for 10 mins in complete silence dreading the dark walls of this place and mentally try to escape our current reality. We can’t help but yearn for normalcy. For me, I yearn for bonding with you… in the comfort of our home… late nights rocking you in your nursery… your sisters involved in loving you… family and friends getting to enjoy you etc. I mourn not ever feeling you in my belly again, that one is really hard for me. It’s a sense of finality, the “never again” is so sad to me. In normal situations as you near the last few weeks of your third trimester, your body is not only physically preparing for birth but also mentally and emotionally. My mind, body and soul completely skipped the preparation phase. One minute I was fully in love with growing you and the next you were gone from me. The journey of processing this experience and being “at ease” with this will just take some time. If I think about it too much, I cry. You’ll learn in life that mama will sometimes tell you “cowgirls don’t cry”, but that’s a lie… they do and it’s okay. The special thing about cowgirls is they always get “back on the horse”. So mommy is saddling up for this wild life with you!
We have also started to put less guilt on ourselves and keep our minds healthy too. The staff and doctors are constantly reminding us to have an outlet while being here. Many NICU parents struggle with guilt. They can spend 12 hours a day bedside with their baby and the moment they leave the hospital they feel guilty for leaving at all. We share in that guilt. We want to spend every waking moment with you, after all, that’s what “normal parents” get to do- come to the hospital, give birth and take their baby home 48hrs later. But that’s not our normal and we have been better about accepting that. So lately, on days when the walls of the NICU seem heavier than others- we take a break. We go enjoy a meal together and talk about life in the future. We go to a cheap show or we go to bed early. I’m still not ready to leave you for longer than 24 hours but I’m doing better with small spirts of time. Your nurses are absolutely phenomenal. In a weird way, I already mourn having to leave them one day. I’m not sure if it’s the hormones or my personality but I am emotionally attached to a lot of things about this place.
I am emotionally attached to your nurses, your doctor and your surgeon. I already plan to keep in touch with them and send them photos as you grow as a reminder of the miracles they performed! They all know a pony is in your future! I can’t wait to send them photos in a few years of you in a saddle grasping the mane of your mini horse with a big cheesy smile! 🙂 I am most attached to the babies surrounding your bed. The NICU here has an interesting set up. Babies don’t have their own room; they have sections of a room. As I sit here and write to you, I can also look up at 5 other babies- one who has been your roomie since you arrived and the others who have joined you since you’ve been here. I can see all their monitors and easily hear doctors and nurses discuss their status, needs and treatment plans. The baby behind you I am most attached to. He is very sick and every single day he is surrounded by doctors and surgeons pouring their heart and soul into him to get him better. He has been here since May, it’s almost October :(. He spends most of his days with part of his intestines laying on his tummy because he continues to prolapse his ostomy site (a small hole in the abdomen where intestines are sewn to, to allow stool to exit when the colon is resting internally). The surgeon and surgery residents have done multiple bed side repairs to put the prolapsed intestines back in but they continue to prolapse 😦 When they try to replace the prolapsed intestines, his heart rate tanks and tries to “code” as the nurses say. His color is a yellowish- grey and he is such a sweet boy. He is still on the ventilator and is intubated like you were a few weeks ago. Today they removed his breathing tube but had to sedate and replace it an hour later because he couldn’t remain stable on his own. I have prayed more for this little boy than I have most people in my life the last two weeks. I don’t even know his name because his family only speaks spanish but every day that I enter your pod, I walk past this little boy and I pray every day his family will be able to take him home one day. I thank God he is still fighting and he made it through another night. Tomorrow he will have another abdominal surgery so I hope he has Dr. Pearson as his surgeon, we know now, he performs miracles!
Whether I am juggling mommy guilt of leaving you in the evenings to go rest, praying for nearby babies, trying to produce milk,
Speaking of the miracle worker, Dr. Pearson stopped by to see you yesterday. It has been 4 weeks since he saved your life with surgery. He was pleased with your weight gain and incision healing. Where are we in our recovery? We are waiting for poop! You haven’t had a bowel movement in a month nor have you had any milk! It’s fascinating how much you can grow with only IV nutrition! You have nearly doubled in size since birth. Today you are 4lb 3oz! I remember the first few days of your life I couldn’t wait for you to hit 3lbs! Now you’re working your way to 5lbs! 5lbs is normal baby size, now we just need to ditch all these monitors and cords to be able to hold you without stress or worry of pulling something out when we try to get our snuggle time. Although, mommy and daddy have become experts with juggling cords, IV lines, monitors and your oral tube! You would be so proud of us ha!
Since the day of your surgery, we have been warned about possible hurdles in the future regarding you being able to tolerate feeds. With so much intestines being removed (65cm!! wow!!!), we have no idea how you will tolerate milk as a baby or big girl food as you grow bigger. Again, mommy’s brain wants numbers and Dr. Pearson always gives me them but then reminds me you are your own miracle, statistics may not apply. But… in general, babies need 14cm of intestines to be able to tolerate full feeds and have no dependency on TPN (feeding tube). You have 35cm left! Which ideally means you have more than enough to be able to tolerate feeding so we put all our hope in this statistic! I KNOW you will thrive baby girl, I KNOW you will beat all the odds and we will be right by your side to watch you do it! Yesterday Dr. Lipski and Dr. Pearson decided to try an enema with you to help encourage a bowel movement and it worked! After 4 weeks, Tenny pooped! You go girl!! This tells us that your intestines are starting to wake up, this is HUGE!
Its time to hold you so I will continue this blog later…
September 26th-
You have reached so many goals since I last wrote! You are now 4.7lbs! You are maintaining your body temperature so the top of your incubator is now gone! and…. you can wear clothes!!! I arrived today with you in an adorable swaddle, outfit and cute hat that nurse Courtney picked out for you! Along this journey of focusing on your health and growth, I forgot about how fun it will be to pick out your daily outfits and make you wear bows! haha which, right now, you hate! Anytime you are wearing a bow, you refuse to look at the camera for a good pic. You have no idea what you are in for! Mommy has so many cute outfits planned for you… and yes, this includes fringe and rhinestone and all the cute cowgirl stuff when you’re bigger- BE READY TENNESSEE!! 🙂 for now, I’ll let you get by with an adorable swaddle and bow for a quick pic. 🙂
All in all, we have had more good days than scary the last few weeks- we couldn’t be more thankful. Now, we just have to wait for your tiny colon to wake up and do its job- but take your time sweet girl. We know you will tell us when you’re ready for milk. Don’t worry, we are fully aware that there is a new “sheriff in town”. It’s your world now, we just live in it. 🙂
GO TENNY GO!
love, mommy
Dear Tennessee Grace 
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