Farewell NICU and Special Care Nursery

Discharge day is a big ordeal. There is a seemingly endless list of things that have to happen both at home and at the hospital before we can leave. I spent most of the night before discharge "rooming in" with the baby. For about 6 hours I stayed in the room and had total charge of her feedings and care. I also had to receive all the training on her monitor and oxygen before room in.

Yes, I really am as tired as I look in this picture. Probably more so.

Another thing we had to do is say goodbye to the people who have been our family for the last 3 months. We were so happy to finally take her home, but I confess, I felt a twinge of sadness leaving our hospital peeps behind.

Kari Wood, NNP

First and foremost among those who will be missed, Kari and Mollie, the two Neonatal Nurse Practitioners who saw us through every step of the way. Along with Dr. G, they spent many hours carefully planning the baby's treatments, easing our stress during the hard times, and rejoicing with us over each one of her milestones. My heart swells with gratitude.

Mollie Gronseth, NNP

Left to right: Adam, Mollie NNP, Karin, Becky, Lisa

This is only a token representation of the NICU staff. Each RN that took care of Angelyn was someone I grew to love.

...and yes, since this is MY blog and the only real journaling I have done of late, I really am going to name them all....

feel free to skip ahead.

There was Sammy, who cared for Angelyn the very first day I came to see her (among many others) and I was sicker than a dog. She also put the Dr. Seuss hat in the laundry and helped me watch for it so we could snag it on the way back.

Sue, Sammy's mom. (yes, it's true they are both NICU nurses). She specialized in creating cute bows and making sure they ended up on Angelyn's head.

One of the night nurses, Bridget, made a little embroidered Winnie-The-Pooh blanket for Angelyn. Just to be nice. Weston's mom met her twice and said, "I just LOVE Bridget." She also cared for us on room-in night.

Becky (pictured above) was the lucky one that got to give Weston and me our Infant CPR training before discharge.

The Dr. Seuss hat was finally retrieved from the laundry by Natalie, who in the early days was also there to make sure I understood that my baby's suffering was not my fault.

Barb told me a story about her neighbor who lived on a dairy farm and once tried to express her own milk with the use of a milking machine intended for cows. And then she stood up in testimony meeting to warn other women never to try the same thing.

Adam had a special way of wrapping Angelyn up so she could sleep on her tummy. It looked so comfortable it always made me a tiny bit jealous. He also called me one day, specifically to tell me that for the first time, Angelyn had taken her entire feeding volume by bottle!

The list goes on and on....Tavonny, Jami, Tamara, Julaine, Rena, Kitty, Annie, Tessa, Taunia, Karin, Karen, Moanna, Danette, Christina.

Not to mention my L & D nurses, Kirstin and Christy, who I went to visit every now and then.

To everyone at Timpanogos Regional Hospital NICU, Special Care Nursery, and L & D....

THANK YOU!!

We love and miss you!

...and now it's time to go.

And for those of you who are thinking right now: "Emily, this is not the post I came here to see," sit tight. The grand and glorious homecoming footage is just around the corner.

Heads Up

Angelyn is coming home TOMORROW!

I am running around like a mad chicken trying to get everything ready.

Birthday Day

Six years ago today I was given the best birthday present, ever. I woke up early in the morning and quickly realized it was the day that my first baby would be born. Peter and I were destined to share this special day for the rest of our lives.

During our family's 2010 NICU experience, we have watched the video I made of Adam's journey through the NICU several times. The occasions on which Peter asks me when I am going to make a movie of when he was a baby have been growing more and more frequent.

And so, without further ado, I give you Peter's baby video. Peter, I love you and am so happy to share this day with you.

ps...I don't know why the right-hand side of the frame is cut off, and I don't have time to figure it out right now. So if you want to see the full picture, you can just watch the video on youtube by double-clicking on the arrow.

Bath Time

First, the best news: Yesterday, Angelyn took her full feeding volume, plus 3 ccs, all by breast, without any help from the nipple shield! This is a huge step and I am happy. She currently gets 5 out of 8 feedings by breast or bottle every day. Feeding and oxygen are the only two reasons left for her to stay in the hospital. Once she is doing all 8 feedings by mouth, we will see how much oxygen help she still needs. There is a small chance she will come home on oxygen, depending.


Angelyn gets her bath every Wednesday and Saturday night. Last Saturday, since I was in the hospital at the time, Tavonny RN asked if I would like to do it. Um...yes, I would.

Up Close and Personal

After 2 months, Angelyn has finally consented to a private interview with the local media!

Yes, I will concede that this interview may be a tad bit one-sided. But if you speak grunt-and-squeak, you may find that Angelyn actually has a lot to say. If you don't happen to speak grunt-and-squeak, and your time is at a premium (like mine), feel free to skip ahead to the points of interest I've highlighted for you here:

New and improved double chin - 1:20

Christmas Bow by Sue - 2:00

Discussion on Hemangioma - 2:15

And just in case you missed it on the video, or if you happen to somehow have found your way to the information on hemangiomas at Children's Hospital Boston and have consequently become worried about what hers looks like, here it is:

Not-So-Good News

Well, a couple of not-so-good items surfaced today.

1. As you know, we have been crossing our fingers that Angelyn would be home around Christmas. That, of course, based upon how well she does with her feedings in the coming weeks. But today as I was trying to feed her again (I am going to the hospital twice a day now), it suddenly hit me how far away we are. She is so sleepy and exhausted all the time, she is nowhere near being able to take all of her feedings by mouth. Right now she can barely handle taking half of her feeding volume by mouth, twice a day. I was just imagining how unsuccessful we would be if we were to expect her to bottle or breastfeed all 8 feedings per day, based upon her current energy level. I mentioned it to Kari NNP and she basically re-confirmed that we shouldn't plan on taking her home until her due date, which is January 5.

sigh.

It's not that I want her to come home any earlier than she is ready. It's just that I am getting tired. Or wait....I am already tired and have been for the last 2 months. This hospital stay has been fun and everything, but I'm ready to go home. I am grateful for her progress. It is slow and steady and I believe it will continue to be steady. We just aren't quite as close as I thought we were. Plus, I learned today that in order for us to go home, she has to demonstrate absence of apnea or bradycardia episodes for SEVEN DAYS. That is a long time. But the good news is, if she can demonstrate that, there's a chance we won't have to bring her home on a monitor. I just have to somehow dig deep for the patience I need to keep plodding along, doing everything that she needs and waiting for the stress and fatigue to go away.

2. She has developed a small Hemangioma on the top of her head. It is pale purple in color and is underneath her skin. Kari said this is not uncommon among preemies. It is not life-threatening. It doesn't hurt. It will probably go away within a couple of years. It could get bigger. There could be more. Hemangioma can also develop inside the body. Once the first one appears, they start to watch the airways to make sure another isn't developing there. They can treat it with steroid injection to encourage it to go away sooner, but really only consider that course of action worth the risk if the hemangioma is on the baby's face (for vision, aesthetics, or psychological reasons) or in the airway (for respiratory reasons). Fortunately in our case, the hemangioma is on her scalp and should be reasonably concealed once her hair starts to grow.

Graduation

December 1st was a big day.

I walked into the nursery and found that Angelyn had graduated to an open crib!!

I knew they were working on weaning the temperature in her isolette down to match the room, but I didn't think we were that close.

Another milestone that day, she decided to latch on and nurse! Well, kind of. She still gets very tired, very quickly. I was feeling happy and encouraged after leaving the hospital that day. However, she hasn't done it quite as well since then. So, while I still feel encouraged that she will get it eventually, it's probably not going to happen overnight. I still don't know where that puts us in terms of going home. We are crossing our fingers for sometime close to Christmas.
Speaking of Christmas, this little hat is another clever Liz Frost creation. It's a Christmas tree. (In case you can't tell.) The nurses at the hospital have gone hog wild over this hat. One of them even found the pattern online and printed it up for herself.