Thursday, May 30, 2013

May 30

Elsie got to go on a field trip today to the neighboring Primary Children's Medical Center. It's connected to the U of U hospital by a skybridge; Elsie took this trip before when she was a wee little baby. It was pretty much the exact same as last time: Life Flight came and hooked her up to their incubator-on-wheels gurney, and we walked over to Primary's. We even went into the exact same radiology room as last time. She's a heck of a lot bigger than the last time she took this ride! And darn it, I forgot to take pictures this time, too! 

Anyway, the reason why we went over there is because before they place the G-tube, they have to do x-rays of Elsie's digestive system to make sure that it is anatomically correct & functioning properly. It was almost exactly like the swallow study that they did back in April. Elsie was placed on the exam table and fed liquid barium from a bottle. It was strawberry-flavored; I think she liked it. It took a few tries to get the exact shot that the dr wanted, but eventually, it was confirmed that her system is good. We already knew that, of course, but whatever, I'm not the doctor. Then we packed her back onto the gurney and went back to our happy little home at the U. 

The next step is getting the doctor to schedule the procedure to place the G-tube. I'm guessing that it will happen at the beginning of next week, but we'll see. 

Elsie is doing pretty good lately at nursing. We've actually started weighing her before & after I feed her to see how much she's eaten. She still only drinks about an ounce before she gets bored/frustrated/tired or whatever else is her reason for stopping, but it's an improvement. Yesterday after she ate with me, she was awake, alert, and happy for almost an hour. It was fun to play with her and talk to her, and to see her watching me. She's definitely sleeping a lot better at night, and you can tell.

At the NBICU, they have volunteers who come in and hold babies whose parents are not around all the time. It's a pretty sweet idea, and I like thinking that someone kind is holding my baby when I can't be there. Anyway, today, a nice elderly lady was holding Elsie when I came into the NBICU. The lady felt a bit of dampness through the blanket and put Elsie onto the crib so that we could change her diaper. Turns out that her wet diaper leaked quite a bit; Elsie's clothes were soaked, the blanket was soaked, and there was also a large wet spot on the leg of the volunteer's pants. What can I say, my kid leaves a mark on people . . . 

So wide awake and happy!
We love Aunt Roberta! Thanks for the cute outfit!

Monday, May 27, 2013

May 27

This morning, I skipped out of flower duty at the family's flower shop and went to the hospital to meet with Elsie's doctors. Since her ROP is gone, the only reason she is still in the hospital is to work on her oral feedings. She's doing much much better sleeping at night, thank heavens, but is still not making a ton of progress with the feeding. I try to tell her how great food is, how much I love to eat, and that she'll certainly enjoy it too, but she doesn't believe me.

Anyway, it is the general consensus of the doctors and nurse practitioners and Elsie's parents, that she will be much more successful learning to eat at home. Home, where she will have two consistent caregivers, where she can be on more of her own schedule, where her mother is readily available 24/7, instead of an hour or two each day. There will be less pressure for her and for me. We'll take things in baby steps.

In the meantime, in order to keep her weight up and to give her the proper nutrition she needs while practicing her oral feeding skills, we have decided to have the doctors place a gastrostomy tube, or G tube, through her abdomen and directly into her stomach. This will enable us to remove the pesky feeding tube that currently runs through her nose and down her throat, which can cause some discomfort, and certainly doesn't help Elsie's sensory issues with always having things shoved down her throat. We will work on oral feedings at home, and be able to supplement those by feeding her through the G tube. It's not a permanent thing, it will just stay there until she's able to take everything by mouth. We don't know exactly how long she'll need it, but it will allow us to have her here at home with us, which is the ultimate goal. If you want to know more about how the G tube works, here's a great article that explains everything nicely:

Elsie will be evaluated by the gastroenterologist and hopefully will get the procedure scheduled before the end of this week, if we're lucky. Of course, she'll be sedated and intubated during the procedure, so she'll need a few days to recover and for the incision to heal. But once she has recovered, then it's homeward bound, baby!

Thursday, May 23, 2013

May 23

During yesterday's eye exam, it was determined that Elsie is ROP free!! The disease has regressed as it should, and she doesn't need any follow-up appointments for two more months. Hooray! 

Now, I know that you're all dying to ask me what this means in relation to Elsie coming home, but you're afraid that I'll bite your head off ;) Sorry about that. Well, what it means is that it's the second-to-last big thing checked off the list that needed to be taken care of before she can come home. The last thing now is to get her to take all of her feedings by mouth. 

I've had some conflicting information on this, so I'm not really sure what is what. At our last care conference, we discussed that it might be a possibility for Elsie to come with a feeding tube, and work on feeding by mouth at home until we don't need the tube anymore. The nurse practitioner who talked to me yesterday said that it's extremely rare for them to send babies home with an NG tube, and that Elsie needs to take 100 percent of her feedings by mouth before she'll be discharged. What's really going to happen? Who knows. Again, we'll just wait, take things one day at a time, and hopefully she'll be home before we know it.

In the meantime, Elsie still has a few things that are being worked on. We're still doing lots of positive touch, and she's getting better and less sensitive, but there's still work to be done. It has also been determined that Elsie doesn't sleep much at night. The nurse took a sleep log record of her sleep patterns last night, and the longest period she slept was 45 minutes. Yikes. This could be contributing to her sleepiness during the day and possibly why she gets so tired when we try to feed her. So today we had a nice doctor from PCMC come visit Elsie, do a brief assessment, and decided that we're going to try some Melatonin to see if it will help improve her sleeping at night. Can I just say how thankful I am that we are getting this problem taken care of BEFORE she comes home? Hopefully, once she improves her sleep at night, she will be more awake during the day and more willing to eat.

Today was a fun day for me, as I got to "room in" with Elsie. We wheeled her crib down the hall to one of the parent rooms, and I got to hang out with Elsie all day. Just me and her. The lovely nurse came in to check on us, of course, and to help with feedings, but it was the first time ever that I got to spend an extended period of time with just the two of us. The idea was that the noise and commotion in Room 8 was possibly contributing to Elsie not getting enough restful sleep; also, maybe the noise was distracting her from being able to focus on feeding. So we spent the day together in our quiet little room to see what we could do in a more peaceful setting (which makes me laugh a little, because it sure ain't peaceful all the time at home!). 

We didn't get a ton accomplished in the feeding department. 2 out of the 3 times, Elsie wouldn't wake up to eat at all. And the one time that she was awake, she was not terribly interested in nursing from me. After several failed attempts, we decided to give her a bottle instead. Then the little stinker ended up drinking almost 2/3 of her feeding from the bottle, which is more than she has ever done before, ever. Way to go, Els!  The nurse was pretty excited about that. Other than that, mostly what we did all day was snuggle, hang out, and chit chat. I did most of the chatting :)

In conclusion, she did get a lot of peaceful rest while we were rooming in, and hopefully the Melatonin that they start tonight will help get her sleeping patterns in order so we can get on this feeding and get this cute baby home!

Cute outfits from Riley and Aunt Mona!

Monday, May 20, 2013

May 20

Nothing new or exciting to post. This is somewhat frustrating to say, because it's been over 3 weeks since we started Elsie's feeding by mouth, and there has been very little progress. Sometimes she starts eating eagerly, only to become overwhelmed and frustrated shortly after starting. Sometimes she refuses to wake up to eat. It's hard to say if she uses sleep as a coping mechanism, to deal with the confusion and frustration of eating by going back to sleep. Or maybe she's not getting enough restful sleep in her room with 5 other babies, two nurses, constantly beeping machines, and the many parents, visitors, doctors, and various other people going in and out all day and night, and is simply too tired to eat. We don't know what the problem is. We do know that she has a lot of issues with overwhelming sensory information; which means that she's still extremely sensitive and wary to touch, mostly around her face.

The OTs and primary nurses are working with us to help her overcome her issues, but it is a struggle to stay patient. It doesn't help when we have countless people asking us every day when Elsie is going to be home. I don't mean to offend anyone, and I know that people are just curious and want to know, but please don't ask when she'll be home. It's too heartbreaking to admit that we still don't know. Yes, we know that it's 2 & 1/2 weeks past her due date. Yes, we know that she's as big as a full-term baby. In fact, when people ask me lately how big she is, I cringe inside and sometimes fudge the details, because I know what's coming next: "She's that big?! And she's not home yet?!" Guess what, there are more important things to deal with than how much she weighs. I'm sorry if that seems rude of me to say, but believe me, we'll tell you when she's coming home! We'll shout it from the rooftops! In the meantime, please be understanding and don't ask. Elsie will come home when it's safe for her to come home. She still has to be cleared of the ROP before she can leave the hospital; that is our biggest hang-up right now. If she still hasn't gotten the hang of eating by then, she might come home with a feeding tube. Right now, it's all just a wait and see.

Something that I try to keep in mind is that, despite the fact that Elsie is 42 weeks old, or two weeks old "adjusted-age", she is going to be developmentally behind her peers for a while. She went through a very traumatic and extremely early birth. Did you know that if Elsie had been born just a few days earlier, that the doctors probably wouldn't have attempted to save her life? She wouldn't have been viable, or able to live on her own, even with the support of the amazing medical technology. If she had been any earlier, we might have only been able to hold her after she was born and be with her as she passed away.

We give thanks every day that she has come so far, that she has miraculously survived with surprisingly few problems. We give thanks every day for our miracle baby. We long for the day when we can be done with hospitals and separations. Thank you all for your endless support; I know that we are loved and prayed for by so many people, and we can feel it. We have been blessed in un-measurable ways during the past 136 days. I apologize if this posts seems a little negative; I didn't intend for it to be that way. I'm just saying it how it is. Thank you for helping us in so many ways throughout our NBICU journey. It would have been so difficult and lonely without all of your support.

Monday, May 13, 2013

May 13

I must apologize, for I have forgotten to post Elsie's 40 week, or 4 month, dollar bill comparison picture. It's so cool and also freaky to look back and remind myself of where we used to be. Here you go:

4 weeks 

8 weeks 

12 weeks 

16 weeks (40 weeks gest)

 I know, I know, I'm so inconsistent on the placement of the dollar bill, making it hard to make accurate comparisons. Oh well, too bad. And I know, I don't have one with her when she was first born. I didn't take very many pictures in those first few days. I kind of didn't want to remember how she looked, because it scared me so much.

Here's what's new with Elsie:

Lest you think that Elsie lives in a cold, sterile, boring environment, think again! Her bed is the most beautifully and colorfully decorated bed in the room. Probably in the whole NBICU. The other babies are all jealous. She now has a fun little fishie mobile that she can look at when she gets bored. That cute polky-dot blankie is one that I made for her, ain't it cute?? She also gets to go for rides in this cool contraption:

It's a neat little chair called the Mamaroo, which has five unique motions to choose from. It's basically a high-tech swing, but is less jarring than a swing, and mimics movements that a parent would do when soothing a child. My father-in-law wishes that there was a Mamaroo chair for adults. It's that cool.

Since Elsie is the old lady in the NBICU, being all full-term and stuff, she gets permission to wear real clothes during the day and her sleep sack only at night. This permits her to be more like a "normal" baby; experiencing getting her clothes changed every day, being able to move her limbs more freely, and having everyone admire her cute clothes. Since I don't have Elsie at home to play with and dress up like the little doll that she is, I can bring in some of our clothes for her to wear while she's in the hospital.

In other news, Elsie had a surprise eye exam this morning. Typically, eye exams are done on Wednesdays, and everybody in the NBICU comes to dread Wednesdays because after eye exams are over, babies are cranky and just want to sleep and not do anything else. This week they came on Monday instead of Wednesday, who knows why. The eye doctor was very pleased with Elsie's eyes. The ROP appears to be regressing. Let's pray that it continues to do so. Hooray!

And then there's breastfeeding. It's kind of an "on again/off again" type thing. Sometimes she does fairly well. Sometimes she refuses to wake up and clenches her little mouth shut as tightly as she can. She has yet to do a full feeding either by breast or by bottle, but it's a work in progress. Elsie is still very sensitive to touch around her mouth, and that's something else that we're helping her overcome. Since she has a paralyzed vocal cord, we have to be careful to make sure that she doesn't choke too much. Occasionally, when she gets a big mouthful of milk and does choke, it scares her and she gets apprehensive when we try to make her try again. Basically, it's a gamble when I go in for a feeding if anything will be accomplished or not. Right now, we're mostly just trying to teach her that eating is a positive experience.

For all of those inquiring minds out there who keep asking when Elsie will be allowed to come home, here's the answer to your question: I really have no idea!!! It all depends on her. The big things that we're waiting on are her eyes and her feeding skills. It's a waiting game, and a big lesson in patience; a lesson that I often fail! I am trying to be patient, especially when I get asked silly questions by people who don't fully understand the situation.

Here are a few more pictures for your personal enjoyment:

Cute outfit from my good friend Kathleen, we love her so!!

High five, mama

Thursday, May 9, 2013

May 9

Nothing much has changed today, but I have to share some adorable pictures with you. Can I just say how much I love having my two girls together? Sure, Evs tried to smother her sister with the blanket a little bit, but it was done in love.

No, he's not wearing a dress. His shirt was dirty from work, so he put on a hospital gown.
I love how protective he is of Elsie and how he gets so worried about contaminating her,
it's so cute! 

We showed Evje how she could have Elsie hold onto her finger and she kept
trying to do it again :)

"I know what to do with babies and blankies. I'll take this one and cover her right up."

Daddy and his girls

This picture makes my heart happy.

Tuesday, May 7, 2013

May 7

You're doing WHAT with that washcloth??

Today was a fun day, as we decided that Elsie desperately needed a bath. I was worried that she wouldn't like it this time, but much like the first time we gave her a bath, she loved it. In fact, she was so relaxed, being wrapped up in a snuggly "Finding Nemo" fleece to keep warm, that she let "it" all loose. Yep, she pooped in the bath tub. Oh, Elsie! So the nurse hurriedly filled another bath tub, and we transferred her to the clean tub and started washing her again. Aaaaand then, she pooped again. So funny, we were all dying with laughter. All of us, of course, except for the poor nurse who had to fill up yet another bathtub and clean out both poopy ones. Hee hee hee. We hurried to get her all clean before she pooped again, but luckily, the third bathtub was the charm.

Let me just tell you, having to pull back several layers of chubby chub-chub to get to the crevices filled with lint and other unknown substances that are stuck beneath her fat rolls, it's probably one of my favorite things ever. Compared to the little stick-figure baby that she used to be, with legs and arms as thin as a pencil, she's amazingly chubby in a healthy way, and I absolutely love it.

After the bath today, she was still wide awake and pretty happy, so it was a good time to thrust her upon my bosoms. Yesterday, the nurse and OT worked with Elsie on her feedings by putting drops of milk in her mouth while she was sucking on her pacifier. She seemed very happy with this situation, and the OT feels like it helps Elsie to understand what to do when milk is in her mouth. I was still a little apprehensive; after all, it's been about ten days since our last (and first) successful breastfeed. We just keep running into bad timing issues. But she did have surgery a week ago, and it seems that she is finally fully recovered and back to where she was developmentally before that darn surgery disrupted her life. So the boob is introduced to the baby again (so sorry, by the way, for all of you who cringe each time I mention my glorious breasts. Hey, it's part of life, and I'm getting less and less self-conscious about it with each new person who has to observe the feeding lessons, so deal with it!), and Elsie latches on! Hooray! She has to be reminded to breathe, but still does a champion job. Normal full-term babies can take about 20-30 swallows before having to stop and recover their breath; Elsie can take 5 or 6. Then she stops sucking, breathes heavily like she's just finished the 100 meter dash, and then continues feeding. The good news is that she is feeling comfortable enough to continue feeding. This is huge progress.

Then, after a few minutes, Elsie stops nursing and starts squirming uncomfortably. The OT suggests that I burp her, and so I put her to my shoulder, and pat her on the back. She lifts her head, looks right at me, and makes the loudest belch I have ever heard come out of a baby. It was so big that it was more like a gag instead of a burp, and I was expecting projectile vomit to hit me right in the face. Lucky for me, it was just air and she kept all that good milk inside where it belongs. Oh my, we were all laughing so hard. Soo so so glad that she didn't spit up in my face.

They swaddle her in a towel or blanket while bathing to help her stay warm and feel secure.

Rinsing off the bubbles.

Love this cute picture! Doesn't it just look like she's sitting on a cloud? Sweet little smile :)

Friday, May 3, 2013

May 3

Today was my due date. 40 weeks ago, when we were trying to get pregnant, I never thought it my wildest dreams that I would only be pregnant for 6 months. 23 weeks and 1 day, to be exact. My pregnancy with Elsie's sister and for the first 6 months with Elsie were so easy. I had hardly any morning sickness. I didn't have any problems. None. I loved being pregnant. Sure, it was uncomfortable, and I had some hip pains at night with Evje in my third trimester. But I loved being pregnant.

It took us three long and very heartbreaking years to get pregnant with Evje, Elsie's older sister. Like any other woman with fertility problems, it's crushing to hear pregnant ladies complaining about being large with child. I would have given anything to experience what they were feeling. Even now, it's still a tender subject. So when we finally did conceive, we were obviously thrilled. I treasured each kick that I felt inside of me. My swollen belly was something to be treasured and caressed, because of the precious child within my womb. It helps that my pregnancies were so easy; maybe if I was sick the whole time, then I'm sure I wouldn't have enjoyed it so much. But being pregnant was a piece of cake for me.

Needless to say, when I suddenly went into labor that night in January, it was the last thing I was expecting.

Anyway, four months later, here we are.

We had Elsie's 120-day care conference today. Here's what we talked about:

  • Elsie is still learning how to eat by mouth. During her second attempt at breastfeeding, she latched on right away and did great. Since then, we had a little setback when she had to have her second ROP surgery and was re-intubated. Each time Elsie has an uncomfortable or traumatic experience with her mouth, like being intubated, it makes her even more sensitive to touch around her mouth. She is still learning to trust me, and that nursing isn't going to hurt her. Also, I'm not at the hospital around the clock, so when I am there during feeding time, she's not always awake or alert enough to be interested in nursing. We've had a few learning experiences, and she's getting practice and is learning to trust me, but it will take time. We're pretty confident that she'll get the hang of it, but if not, then she might have a feeding tube when she goes home, and we'll keep practicing breastfeeding at home until she can do it well enough to gain weight. 
  • Elsie is back to the oxygen settings that she was at before her latest ROP surgery, which is good. When they were weaning her back down after the surgery, she was very annoyed with the bulky CPAP cannula. She is much happier now that she's back on the small low-flow nasal cannula.
  • Elsie's eyes are pretty much her biggest hang-up right now. She had an eye exam today (at the same time when we were supposed to be trying to breastfeed, so there goes another opportunity to practice-- babies who have their eyelids propped open and given eye drops and otherwise manipulated are not happy and don't have energy to try to learn a new skill like breastfeeding after the eye exam is over). The exam today went well, but she will need to be monitored every week until the ROP has been completely resolved. This could take several weeks. Which means that . . . .
  • Until Elsie's ROP has been resolved, she can't go home. When babies are discharged still on oxygen, which Elsie will be, they are on 100 percent oxygen at a very very low rate. However, too much oxygen exacerbates the ROP and can cause it to get worse. While she is in the hospital, Elsie is on a blended oxygen mixture and it is closely monitored and constantly adjusted by the nurses. We can't take a blended oxygen mixture home. The "at home" oxygen that comes in a tank is 100 percent oxygen. Am I making sense? What I'm trying to say is that it will take several weeks to make sure that her eyes are completely healed, and until then, she can't come home. The best case scenario that we were given today (rough estimate) is another 4-6 weeks. Ugh.
I'm trying not to think about it too much tonight, or I'll get depressed. 4-6 more weeks of driving to the hospital each day, finding babysitters for Evje, and not having my baby at home with our family.

I'll try to look at the bright side. I'm sure there's got to be a bright side somewhere. I just don't know what it is yet.

Elsie got a new "Riley sign" today. Cute butterfly!