Saturday, June 29, 2013

2 weeks post-NBICU

Elsie has been home now for 2 weeks. We are all adjusting to our new life at home. Big sister Evje is doing much better than she was the first week, which this mommy is extremely grateful for. And little Elsie is happy and well. Here's some stats and info on our little miracle baby:

  • At 7 weeks corrected age (almost 6 months actual age), Elsie weighs 10 pounds 11 ounces and is almost 22 inches long. Our pediatrician is very happy with her weight gain since leaving the hospital.
  • Elsie has been doing really well lately at sleeping at nighttime. She goes to sleep at about 9pm, we move her into the bedroom and start her bedtime feeding at 10pm, and she sleeps pretty good until 3 or 4ish, when she wants her diaper changed. I change the diaper, and she sleeps ok until 6 or 7ish. Today she slept until almost 8, which was a treat. I still wake up at 2:30am to pump, and the beeping of her monitor every once in a while keeps me in a semi-asleep, semi-awake stage, but I try to take naps during the day when I can so that I get enough sleep. 
  • Comparatively speaking, Elsie is a pretty easy baby. Evje was what you might call "needy"; always wanting to be held, screaming like crazy when we put her in the swing or the bouncy chair, and a very light sleeper who woke up whenever she was moved from one place to another, or at loud noises. Elsie, bless her heart, is usually content to sit in a bouncy chair or her Mamaroo or the Moses basket. She usually doesn't cry when she wakes up from a nap, but will sit quietly until one of us walks by and sees that she is awake.  She doesn't need to be rocked to sleep, and I certainly don't nurse her to sleep, ha ha; instead, I place her in the basket or her bassinet, swaddle her legs down tightly, and she goes to sleep. All by herself. It's miraculous. And when we move her to the bedroom at night, or change her diaper in the middle of the night, or fiddle with the feeding tube and inadvertently wake her up, she goes right back to sleep without a fuss. Again, to me, it's amazing. I love it. 
  • Elsie's still not super into oral feeding. Mentally and emotionally, it freaks her out. With everything she has been through, and all of the tubes that have been down her throat for five months, eating on her own is stressful and frightening for Elsie. She is making improvements, slowly, but still has a long way to go before her G tube will be removed. 
  • We have been given the go-ahead from our pediatrician to start doing trials of no oxygen when Elsie is awake! As I have been typing just now, the oxygen machine has been turned off for probably 35-40 minutes, and her saturation rate is still sitting pretty at 95%. Compare this to two weeks ago, before we left the hospital. We had to do a "room air test", where we take her off the oxygen and record her saturation levels, which ought to stay between 88-98%, basically to prove to the insurance company that she does in fact need supplemental oxygen to stay alive. When we did the room air test the day before we went home, her saturation level dropped to less than 80% in about two minutes before we turned the oxygen back on. And now, two weeks later, I'm amazed at the improvement in such a short time. Her lungs are healing. They are getting better. She won't be on oxygen forever and I won't always have to lug around an oxygen tank & monitor whenever we leave the house, and someday she won't be tethered down by cords and machines! It's a wonderful feeling.

Last but not least, we have put together a "letter" from Elsie explaining our visitation policy based off of information from our doctors, since we've had so many questions about visitors. Thank you for respecting our desire to protect our special baby.

Dear family and friends,

I’m super excited that I have reached the point in my journey to finally say I’ve come home! I have overcome so many obstacles along the way and I am getting stronger and stronger every single day. Mommy and Daddy cannot thank you enough for the outpouring of support, understanding, and love that has been received from everyone. So many of you have done so much for us along the way and we truly appreciate every bit of your help, concern, thoughts, and prayers.

Now that I am transitioning to life at home, I ask that you continue to support me as I grow. Please remember that I am still small and even though I am not in the hospital anymore, I continue to have special needs simply because I was born very early.

My immune system isn’t completely developed yet, so I am going to need you to please not visit me if you are feeling sick. Even if you just have a cold, please stay at home. I know you really want to meet me and I want to meet you too, but even a common cold can make me very sick. If you have been exposed to anyone who has been sick within the last five days, please stay at home until you are sure that you have not contracted the illness and are just not showing symptoms yet. When you do come to visit me, my parents ask that you thoroughly wash your hands when you arrive. My mommy and daddy also have a great big stash of hand sanitizer so don’t forget to take a few squirts of that before you touch or hold me.

I love my big sister, but like all small children, she can’t always communicate when she isn’t feeling well until it’s too late. If you are sick, please stay away from places where other people and small children can catch your illness. If your nursery-age children are sick, please keep them home from church or play dates so that we don’t unknowingly bring germs home. Also, I’m thrilled to someday meet my young cousins, but my doctor said to limit my exposure to young children. If your young children are healthy, vaccinated, and sanitized, they are welcome to visit for short periods of time, but no sleepovers yet.

My respiratory system is also still vulnerable, as I have chronic lung disease. So if you do come over to my home, please don’t wear any strong perfume or cologne. If you smoke, I am going to need you change your clothing and refrain from smoking before you come to visit me. My lungs are very sensitive and cannot take even the smell of second hand smoke.

If it is RSV or flu season, please understand that I may not be able to visit with you just yet. Respiratory syncytial virus, or RSV, is a respiratory virus that isn’t any worse than a common cold, but for preemies like me, the virus can be quite different and very scary. Babies like me that were born before 36 weeks gestation are at highest risk for complications like bronchiolitis, pneumonia, and other serious breathing problems that could put us back in the hospital. Sometimes the side effects are so bad that they can be fatal for babies like me. Preventing the spread of RSV can be very difficult. The virus is spread through physical contact or through the air if you sneeze or cough. RSV can live on hands for up to 6 hours and on surfaces for up to 12 hours. It is spread very easily, especially by children. So please understand when my parents don’t have visitors during this season. 

Please ask my mommy and daddy when a good time would be to visit and be mindful of how long you stay. Because my sensory system is also learning how to cope with my new world, I may get over- stimulated easily. In the NICU I was kept in a warm, dark and mostly quiet place. I slept a lot while I was in the hospital, but I will still need to sleep and rest a lot now too. If I am asleep when you arrive, please allow me to keep sleeping. I need all of my energy to eat, grow, and thrive. Too much stimulation or over stimulation may set me back. Please understand and respect my space if I need it.

Please know that this letter is not meant to hurt or offend anyone, it is simply meant to show that even though I may be home, I am still a preemie and need some extra time to grow and thrive.
Thank you for understanding and respecting my parent’s decisions to keep me happy and healthy. They have been through one of the biggest challenges of their lives and we are finally home, safe and sound. I am super excited that you want to meet me and I cannot wait to be part of your world.

Hugs and kisses,



  1. Your letter from Elsie is nicely written and a very good idea! I'm glad that Evje is adjusting, too. Love you all!!!

  2. So happy to hear things are going so well. Love the update and can't wait to see more pictures of your beautiful family.