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,

Elsie

Life at home

It's been one week since Elsie came home from the hospital! Wow. We've made many adjustments in our lives since then. It's been very busy and sometimes frustrating dealing with a medically needy infant as well as a clingy 2 year old who is confused by all the changes in her life.

Poor Evje, I know she will adjust soon, but things have been very stressful for her lately. She won't leave my side and wants to be held a lot. She wants to stay in her pajamas most of the day, I think because she has associated getting dressed with leaving the house to go the babysitters. If anyone comes over to visit, she is very suspicious that they will either snatch her up and take her away, or that I'm going to sneak out and leave her with them. Most of the time, she loves her baby sister, but there have been occasions when she is frustrated and upset that she no longer has my undivided attention. It will get better with time, I know.

Elsie is doing well, and it's been such a joy to have her at home. We've set up a "baby station" of sorts in the living room, which is where Elsie spends the majority of the day. Since she needs to be attached to the oxygen machine, which is heavy and bulky, we park the machine in the corner and she rotates from her Mamaroo chair, to the Moses basket, to being held, all within 10 feet of the oxygen machine and pulse oximeter. We've all learned to be mindful of Elsie's tubes and look before we step. At night, Clayton and I team up and switch all of the equipment to the bedroom for the night. We've had a few rookie moments where her oxygen levels have dropped and we weren't sure why, until we discovered the canula out of her nose, or once when the tube had become disconnected from the oxygen machine. But for the most part, we have quickly become very familiar with Elsie's various machines and medical apparatus.

Elsie has her good days and her bad days with oral feeding. For the first few days at home, she had a lot of anxiety when eating, probably due to the change in environment, but is doing better since then. We're happy to have the G tube to make sure that she is getting enough calories and nutrition while she is becoming comfortable eating.

I found the following paragraph online, which explained very well and validated what we are going through:
"Fragile infants, recovering from very serious illnesses, can be very difficult to feed and difficult to "read". Some prematurely born infants, even after they become healthy, still do not give clear cues to express hunger. Children with lung disease, gastro-esophageal reflux, or other medical problems may tire before taking in enough nutrition in one feeding and may not seem interested in additional feedings. It can require considerable hard work to provide the frequent, small feedings necessary to maintain adequate nutrition for infants who can consume only small amounts at a time. While feeding time is the most pleasurable activity most young infants experience, it can be painful and stressful for infants experiencing feeding difficulties. It also tends to be intensely stressful for parents." (From www.pediatrics.emory.edu)

This morning, in order to spend some quality time with both of my children outside the limiting confines of the living room, I hooked Elsie up to her portable oxygen tank. We loaded up the pulse oximeter, an infant rocking chair, and some blankets, and headed out to the backyard. Evje and I sat in camp chairs on the patio with Elsie in her rocking chair between us, and we leisurely watched the birds eating at the bird feeder. Too bad the rest of the day wasn't as relaxed :)

Just enjoying an early morning snuggle with Mommy!

Awesome onesie from Uncle Eric & Aunt Shelene from Disneyland (Yoda). 

Yoda Onesie

Quick snapshot of little missie discovering her tongue

I told Evs to smile and this is the expression that she chose to make?

Cute sisters!

2 years old and already knows how to make a duck face?! I promise I did
not teach her this expression!!

Homeward bound!

No more hospital!!!

She looks so little!

Now that I have a few free minutes, I thought you'd like some more details on Elsie's big homecoming day. It was great! We went over a lot of paperwork, the nurses packed two big bags full of supplies for us to take home, picked up Elsie's prescriptions (Melatonin & multivitamin) from the hospital pharmacy, and then said "So long, Charlie!" We brought in a treat basket for the nursing staff, along with some gift cards for Elsie's awesome primary nurses. I was touched at the NNPs and nurses who stopped by as we were packing up to say goodbye and to wish us well. I will miss them! They have definitely made a huge impact in our lives, and we are grateful that our baby was in their excellent care.

Nurse Blake walked us out to the car, and we were off! Elsie didn't like being strapped into the car seat, but once we started moving, she did fine. Her eyes went big as she took in the sights, smells, and sounds of being outside. 5 months old, and she's never been outdoors.

When we got home, we were greeted by pink and purple balloons and a welcome home sign, courtesy of Grandpa Joel and Grandma Ann. Other welcome home gifts included an incredibly delicious chocolate cake, a diaper cake (not as delicious as chocolate but more practical and really cute!), sweet individualized onesies, and to my great surprise, a Mamaroo chair. Also, the morning after Elsie came home, we looked out the window and saw that we had been "heart attacked" by the fabulous Faudree family. I forgot to take pictures before we had to hurry and grab the hearts before the sprinklers went off, but Evje thought it was so exciting and we felt so loved. What sweet and thoughtful gifts; we are so blessed to have such wonderful and generous people in our lives.

I've got a lot more to say on life at home, but it's getting late, and I've got a hot date with the breast pump before I can go to bed. So I'll save it for another post. In the meantime, enjoy some more pictures and have yourself a wonderful day.

Home!!

June 13

After 160 days in the NICU, we are thrilled to announce that sweet baby Elsie is home with her family. I am holding her now and typing with one hand :)

It's been a busy day but a good one. I'll try to update later when my kids are asleep. Ha ha, because I totally have two kids at home now! Happy day :)

June 12

Look who I found playing in the blanket storage area of Elsie's bassinet :) She wanted to take a nap there. She didn't take a nap, not there nor anywhere else that I tried to get her to nap, much to my dismay, but what a cute girl. Luckily she doesn't weigh very much so she didn't break the poor bassinet!

We now have at our house an oxygen concentrator machine thingy that sucks oxygen out of the room air and converts it into pure oxygen, which we will hook up to Elsie's nasal canula. It will provide oxygen indefinitely as long as it is plugged into an electrical outlet. We also have two spare tanks of oxygen, a feeding pump for continuous night feeds (YES!!), and an IV stand to hold bags of milk for the feeding pump. The bassinet is clean and ready, clothes have been washed, folded, and placed in the dresser. Diapers and wipes are readily available. All we need now is the baby!

June 10

After many delays, Elsie's G tube surgery finally took place this afternoon!

Oh wait. First, I wanted to tell you how when I got to the hospital, a sweet volunteer was holding Elsie. The volunteer looked up, pleased to see me, and told me that she has held Elsie every Monday for the last 3 weeks and thinks that she is just the sweetest baby ever. How nice is that??

Back to the surgery. Elsie was moved to Room 1, where the surgery took place. The doctors came in and were explaining everything to me while they were getting the equipment set up. Then the IV in Elsie's hand went bad, and her poor little hand was swollen and purple, it was so sad. They took that IV out, and placed a new IV on the top of her head, where she hopefully wouldn't be able to wiggle it out. I met the much-desired anesthesiologist, who was out of town last week, hence the delay in scheduling the surgery. The doctors offered to let us stay in the room to watch if we wanted to, but I opted out. I mean, I think that watching a surgery would be interesting and kinda neat, but not when it's my baby. That's too personal. If anything had gone wrong, the odds of which being very very slim, but still, if anything had gone wrong, I would have been scared. So Mona and I went and hung out in the waiting room and talked about food, which made me really hungry.

The surgery took about 30 minutes, and everything went fine. Elsie was extubated very quickly after the surgery was over, and by the time I was allowed in to see her, she was back down to her pre-surgery oxygen settings, which is very good. She was starting to wake up from the anesthesia when we were allowed back in, and she wasn't happy. It was pretty sad. I've never seen her so agitated. At one point, one of her flailing hands caught the IV at the top of her head, and she almost pulled it out. Poor baby. While we were trying to calm Elsie down, I think it was just the stress of the afternoon combined with the radiant heat coming from the operating bed and the fact that I hadn't eaten anything all afternoon, but I started feeling a little light-headed and had to go sit down. So embarrassing. Another nurse brought me a cup of ice water and I soon felt better. The nurse-practitioner decided that Elsie would benefit from a mild sedative/pain reliever, which was administered through the IV. She calmed down almost immediately and fell into a deep sleep.

Such a deep sleep was she in that Elsie's respiratory rate slowed waaaaay down. Her oxygen saturation and her heart rate were fine, but she was taking 15, sometimes 13, breaths per minute. Typically, her respiratory rate is anywhere from 30 breaths per minute to 80 bpm. So the nurses and I watched her very carefully, and she made us a little nervous, but she was fine.

After an hour or so, Elsie started to come out of her deep sleep, and was unhappy again. After several minutes of trying unsuccessfully to calm her, the nurse decided that there's no medicine like snuggling with Mommy. We carefully lifted her out of the bed, and I held her close and rocked her. She clung with all of her might to my index finger and wouldn't let go. It breaks my heart to see my child in pain and distress, but I know that this was something that she unfortunately needed to go through so that we can bring her home. She slept in my arms for a while, and then the nurse gave her another dose of sedative right before I left to go home. This time, they only gave her half a dose, so as to keep her breathing regularly. She was calm and comfortable when I left, and the nurse assured me that Elsie would get one-on-one care throughout the night, even if the nurses had to hold Elsie all night long, they would take good care of her. I wish that I could have stayed with her longer. Poor baby.

getting ready for surgery

Dr on the left is the anesthesiologist. Look at Elsie looking
up at him, like "What are you going to do to me??"

This is right after they put the new IV in her head. You can see
her red and swollen arm that the RT is holding down.

Post-op picture, IV on her head, swollen right arm & hand

Swollen hand and arm looking much better, but it was still pretty puffy and
bruised on the posterior side of her hand

Thanks, Auntie Mona, for taking pictures for me, because I somehow forgot to bring my camera.

So, remember a week or two ago when I was really moody and told everyone to stop asking me when Elsie was going to come home?? Well, I take back my orders. You can go ahead and ask me, if you'd like to!

june 7

Elsie's g tube placement has been postponed until Monday or even Tuesday of next week. There's some kind of excuse that the anesthesiologist who normally assists the dr is out of town, and they somehow can't find another one whose schedule was open today. Even though we've had this thing planned for like ten days.

More waiting, more frustration.

June 4

Today is Elsie's 5 month birthday! Just in case I haven't explained this yet, preemies have "actual" ages and "corrected" or "adjusted" ages. Elsie actual age, just like it sounds, is her chronological age, which is 5 months old. Her corrected/adjusted age is what she would be if she had been born full-term. Her corrected age is 4 weeks, or 1 month old. This matters because, obviously, Elsie is not developmentally where a full-term 5 month old baby would be. Developmentally, she is a one month old baby. All of her milestones will be judged on her corrected age for the first year or two of her life. Most preemies catch up developmentally to their actual age peers within about two years. Hopefully that makes sense. Elsie is 5 months old actual, 1 month adjusted.

And heeeeere's our dollar bill pictures for the big 5 month lady!

1 month

2 month

3 month

4 month

5 month

As you can tell, Elsie was not terribly interested in holding still so that I could get a good picture. But the pictures tell a true story. Our little girl is growing so fast! I don't know how big she is, I've stopped asking because I don't really care a ton how big she is now. She's grown out of most of her newborn clothes. She's fat and healthy, and that's all that matters to me :)

I took a couple videos of Elsie crying to post on here; lots of people have asked what her cry sounds like since she has a paralyzed vocal cord. I'm so used to hearing Elsie's soft cry that when my cute 5-week-old niece was staying at our house a few weekends ago, I was surprised to hear her seemingly LOUD cry. "Why is your baby crying so loud?", I thought, "What's wrong with her?" Oh, that's right, she sounds like a normal healthy baby. It's my baby who is the quiet one, ha ha ha, it made me laugh. Anyway, here's the videos. In the first one, she's just kind of fussing, rather than full-on crying, but the second one gives you a good idea of what her cry sounds like.

Happy 5-month birthday, cute girl!

June 3

Still waiting. No word yet from the doctor as to when Elsie's G tube will be placed. We're hoping to hear from him this afternoon. Trying to be patient but not really wanting to.

In the meantime, it will be five months tomorrow since Elsie's fateful birth. Five months. Wow.

When this ordeal is over, I'm going to award myself the "Best milking cow of the year" award.

**********Amendment: I talked to the doctor this afternoon. Elsie's G tube procedure is scheduled for Friday. Ugh, not until Friday!! More waiting to do :(  At least now it's scheduled.