Monday, April 29, 2013

April 29

After another eye exam this morning, it was determined that Elsie needed another laser surgery to touch up a few spots that could potentially cause trouble, and so they pulled out the magic laser guns once again. They are more concerned about her right eye, but they also touched up a few vessels in her left eye while they were at it. Hopefully this does the trick and her eyes can heal and grow as they should from this point forward. It's another little setback in her progress, as she had to be intubated again for the surgery, and will have to wean back to where her oxygen settings were at before the surgery. And like anyone else who has had any kind of surgery, it takes time to heal and recover. But hopefully her recovery will be quick and we can get back to where we used to be.

Speaking of oxygen settings, on Friday night, Elsie was taken off the high-flow nasal cannula and was put on just a regular ol' nasal cannula. The nurse explained it as being the type of nasal cannula that any regular person admitted to the hospital, needing to be on oxygen, would use. Regular people! So when she recovers from the surgery, hopefully it won't take her too long to get back to this oxygen setting.

Today, other than Elsie having laser eye surgery, was a big day for the Sagers family. Not only was it Clayton's birthday today, but today was the first day that siblings under the age of 14 were allowed in the NBICU. Because of it being RSV season, they had age restrictions in place all winter long to reduce the exposure of the tiny babies to potentially deadly diseases like RSV and the flu. So today, Elsie got to meet her older sister Evje for the very first time. Ok, well, Elsie technically was unconscious, due to being sedated from the surgery, so there wasn't a ton of interaction. Ok, there wasn't any interaction :) But Evje and her parents were very excited for this special moment.

Everyone always asks me if Evje understands about Elsie, that she has a little sister. The answer is, I really don't know. Evs turns two on Wednesday. How much does a 2-yr-old understand? Who knows. We talk about Elsie a lot, pray for her in our family prayers, show Evje pictures and videos of Elsie. So she knows that there is a baby named Elsie, but I don't know how much of the sister stuff she understands. Hopefully after today, getting to actually see and touch Elsie, helps her understand a little bit more.

Personally, I find it interesting that on my birthday, I got to hold Elsie for the first time, and now, on Clayton's birthday, it just happens to be the day that young siblings are allowed to visit the babies, and our entire little family is together in the same room for the first time ever. Coincidence? I think not. I think it is the Lord's way of saying happy birthday to us.

It was pretty exciting for me to watch Evs with her baby sister. At the front desk, they took Evje's temperature and made a copy of her immunization card to make sure that she was immunized and was in good health. We helped her scrub her hands and arms, and explained that we always have to wash our hands carefully before we touch Elsie. She got to wear a special sticker that identified her as a "Big Sister," and I think she was pretty happy to have her own sticker, since Mom and Dad always have stickers on when they visit Elsie. Evje wasn't concerned about the breathing tubes and the other medical apparatus; we explained to her that it was helping Elsie to breathe and to get better. She kept saying "Eyes hurt" because Clayton explained to her that Elsie's eyes had been "hurt" and that the doctors fixed them. She said "Baby Elsie" several times, and also "baby sleeping". Then after we had left the room, she kept asking to see Elsie again, which kinda broke my heart a little, but oh well. She can only visit for 15 minutes twice a week, but it's better than nothing! All in all, it was a happy experience. It would have been more fun if Elsie had been awake instead of knocked out cold, but we'll get to experience that some other time.

Here's a bunch of pictures for your viewing pleasure.

She liked the monkeys on this blanky :)

Daddy explaining about the tubes

"Baby Elsie!"

Touching so soft

Poor baby

Swollen eyes

A sister's touch :)

Happy birthday, Daddy Clayton!

Friday, April 26, 2013

April 26

Man, how about that pity-party on my last post? Ha ha, I don't even know who wrote that! I'm sorry. Sorrow, grief and frustration are all a natural part of the healing process, so thank you for allowing me to express mine. I have my bad days every once in a while, but luckily, I am surrounded by the best people and that makes it easier to stay upbeat and positive most of the time.

Last night, Elsie had her second attempt ever at breastfeeding (sorry if you're grossed out by all the boob-talk lately), and she latched on right away like an old pro! It was amazing! During her first try a few days ago, she suckled a bit but nothing serious. Last night, however, was a huge success! She nursed for several minutes before becoming overwhelmed and tired. Baby steps, my little one. Way to go, Elsie!

Also last night, Clayton and I attended a discharge class. It's mandatory for parents to take the class before their baby goes home. And while we've still got a ways to go before Elsie can come home, they only offer the class once or twice a month, so we figured we might as well go sooner rather than later. My favorite part of the night was when the instructor asked us how early our baby had been born, and the room was full of shocked whispers and gasps when Clayton said "four months". It's kind of like a badge of honor now.

Anyway, the class was informative but mostly common sense parenting stuff, plus learning infant CPR. One of the more important things was discussing how, as Elsie's parents, we will be her protectors to hopefully prevent her from catching any illnesses while her immune system is catching itself up. When Elsie comes home, visitors will be limited to healthy, non-smokers. Anyone who touches or holds Elsie will need to thoroughly wash and sanitize their hands first. And for the first few months, she will need to avoid places with large crowds of people, like shopping malls, stores, and church. And Disneyland. Thanks for being understanding that we will need to keep our baby safe.

Anyway, we're starting to catch a glimpse of light in this very long tunnel. We have been and continue to be blessed more than we've ever imagined. Thanks for all of your love and support. Three cheers for baby Elsie!

Wednesday, April 24, 2013

April 24

Feeling glum. Don't worry, nothing is wrong with Elsie, not really. I'm just having one of those days where I am feeling the weight and the worry of the last 110 days, and I'm tired of it all.

Elsie had another follow-up eye exam, and they warned me not to watch because they have to prop her eyelids open with a speculum and it's not pleasant. So I watched from afar, and it was kinda freaky to see her little eyelids opened up so far. She didn't enjoy it. Anyway, they spotted a small area in her eye where they might need to go back in with the lasers and zap some blood vessels that they missed. They're going to do another exam on Monday to see if it is worse, and if so, then they'll schedule another surgery. Which will set us back again with the learning to breastfeed and weaning off the oxygen.

I left the hospital feeling weary and feeling sorry for myself. I saw another family leaving the hospital, the mother being wheeled out with a wheelchair and the proud father carrying their new baby in a car seat. And suddenly, tears were pricking my eyes. I want to bring my baby home. I want to not worry about her eyes. I want to hold her without seeing her oxygen needs go up, because she doesn't like being touched. I want to hold her and not have the constant worry that I might not be holding her in a good position for her airway to be open enough. I want to feed her and snuggle her and dress her, without the constant drag of tubes and cords that are attached to her body. I want her older sister to see her and know that this mysterious "baby Elsie" that we always talk about is an actual baby and is her little sister. I want to be together with my two children and my husband, instead of always one child or the other. I want the worry and turmoil and crazy schedules and finding babysitters and everything else to just go away. I'm done with it all today.

Don't worry, I'll be fine. Just needed to vent. Happy Wednesday, everybody :)

Monday, April 22, 2013

April 22

Elsie's swallow study was done today. Here's some catch-up info in case you are just joining us and don't know what I'm talking about, or if you just need a refresher course on NBICU stuff :) Elsie's left vocal cord was paralyzed as a result of her PDA ligation (heart surgery), and so they needed to test her to see how the vocal cord would affect her swallowing. Your vocal cords close your airway when you swallow, so food/liquid goes down your esophagus instead of into your lungs. If one of your vocal cords is paralyzed or not working properly, then you might have trouble swallowing food/liquid, especially thin liquids like say, breast milk, and can potentially aspirate the food into your lungs.

Today, Elsie was wheeled down the hall, we took the elevator down to level 1, and went to Radiology. She was placed on the x-ray table and given her binky (pacifier). "Why do they need her binky to do x-rays?", you might ask. I'll tell you why. Elsie has not ever been given a bottle, so she might not know what to do with one yet. But she is getting pretty darn good at sucking on her binky. Sooo, while she sucked away happily on her binky, our wonderful Occupational Therapist (Vickie-so nice!) syringed small amounts of liquid barium into her mouth. And since Elsie was sucking her pacifier, the barium was sucked down her throat and we watched it go down on the x-ray. 

And the result? Success! She didn't get any liquid in her lungs, didn't cough, didn't choke, it all went merrily into her stomach. Hooray! If she hadn't been able to swallow the barium, then she would have to be fed thickened formula instead of milk. But since she didn't have any problems, then this means that we can start teaching Elsie how to breast feed or take a bottle by mouth. 

This is important to me, not only because I want my kid to have the best life ever, but for more selfish reasons. I have been pumping breast milk this whole time to keep my milk supply going, not only to feed her through her feeding tube now, but also in the hopes that I would be able to breast feed Elsie when she comes home. We have seriously gallons of milk stored in our freezer, and we've just barely started feeding Elsie milk that I pumped way back at the beginning of February. Pretty sure that we've got enough to last the rest of her feeding tube days and then some. But if they had done the test today and told me that I would not be able to successfully breast feed my kid, and I have been pumping every three hours for the last 3 & 1/2 months so that I could, I was seriously going to hurt someone. Every. Three. Hours. Every THREE hours!! So to say the least, I was thrilled that Elsie passed the swallow study with flying colors. All that pumping is not in vain!

I'm sorry to say that I forgot to take a single picture of this eventful day! Instead, please enjoy this picture of Elsie's cute sister. 

Thank you for your continued prayers and support! We love you and are blessed to have all of you in our lives!

Thursday, April 18, 2013

April 18

Baby Elsie is doing well, and I don't really have a ton to say. But here's the latest for all of you inquiring minds out there :)

Elsie got moved from Room 2 to Room 7 on Tuesday morning. The NICU had a sudden influx of babies; I heard there were 4 new babies in one hour, so they had to shift everyone else around to make room for all the new kids. Room 7 is basically the same as Room 3, which is where she was before her eye surgery. Rooms 3-8 are all pretty much the same, and I think the ratio is 3 babies for each nurse. Then today, we found that she had been moved again to Room 8, which is actually a lot more quiet than Room 7, and Elsie has the only bed that is next to the window, lucky girl.

The Occupational Therapists have been working with Elsie in order to prepare her for feeding by mouth. The swallow study has been scheduled for Monday morning. Elsie has been sucking on her pacifier a lot more than she ever has before, which is good. Sucking and breathing at the same time is sometimes a tricky concept for preemies to learn how to do, so don't get me wrong when I say I'm excited that my baby sucks-- ha ha, get it? I'm soo funny. Anyway, they syringed small amounts of milk into her mouth while she was sucking on the pacifier and she seemed to enjoy that, so that is a positive sign.

Elsie is still on a high-flow nasal cannula, and is still on 1.5 liters per minute. She's having a little bit of a hard time weaning off this setting down to 1 liter per minute, so if anyone is still praying for Elsie, this is something specific that she needs help with.

Elsie had her weekly eye exam on Wednesday, and it appears that she has healed well from the laser surgery and does not have any progression of the ROP at this time. They'll continue to monitor her for several more weeks to make sure that it doesn't come back.

This cute lil outfit has a little bunny tail on the bum-- so cute!!

Oh, I almost forgot. A few of you have wondered about Elsie's length, so I asked, and she is currently about 17.5 inches long. She is 6 pounds now, and would have been 38 weeks gestation tomorrow (Apr 19). Have a happy day, everybody :)

Sunday, April 14, 2013

April 14

Little Miss Elsie is 100 days old today! We celebrated yesterday by dressing her up in her first real outfit (this one is from Chantel M, thanks!). We have three little preemie outfits, and I was starting to worry that she is going to grow out of them before she gets a chance to wear them. So even though she is wearing the hospital clothes nowadays (long-sleeved shirt and a sleep sack), and I'm sure it makes the nurses a little crazy to have to undress her, I decided that she's going to wear these cute clothes instead of hospital clothes.

Little Thumbelina isn't so little anymore; she's almost up to 6 pounds. She has recovered very well from her eye surgery. After having to be intubated during the surgery, they were a little worried that she would have a hard time going back to her previous settings on the high-flow nasal cannula that she was using before the surgery. But, proving once again how tough she is, Elsie is back on 1.5 liters per minute and doing great.

Thursday, April 11, 2013

April 11

ROP surgery went well. Nurse Kelly was with Elsie the whole time, and said that she did great. It is comforting to me to have caretakers who know my baby well, and can be there with her when I cannot. We love our primary nurses! Anyway, surgery went fine. Basically, Elsie's eyelids were propped open (don't worry, she was sedated with general anesthesia, so she didn't feel a thing), her pupils were dilated, and the doctor took his magic laser gun and zapped all of her rogue blood vessels so that they don't detach her retina and cause her to be blind. The risks of the surgery are very minimal; one being that it might cause her to be nearsighted, but like I've said before, the poor kid doesn't stand a chance of NOT being nearsighted due to her genetics, so no big deal there. The other risk is that there is a very small chance of the laser not get all of the bad blood vessels this time, and if so, they would have to go back in a few weeks and do it again. Again, no big deal, please Mr. Eye Doctor, work your magic laser again and do what is necessary to prevent my baby from going blind. Thank you.

After surgery

They performed her surgery at her bedside, but first moved her to Room 2, which is more private and less crowded. She will probably be in Room 2 for a few days, since she has an IV and is recovering from surgery. They intubated her since she was under general anesthesia, and wanted to make sure that she kept breathing during the sedation. We were assured, however, that as soon as she came out of her anesthesia that they would pull out the tube and put her back on the nasal cannula. Her poor little eyelids are a little swollen, and they are taped shut until tomorrow morning, so that her eyes can recover. The eye doctor will continue to monitor her eyes weekly, to make sure that her eyes heal and to make sure that they didn't miss any problem areas. 

Needless to say, the swallow study and learning to feed by mouth have probably been pushed to the back burner for a little while until she recovers. One small step back in her overall progress, but a necessary step back so that in the future, she can leap ahead and see the beauty that is all around her.

It kinda looks like her left arm is bandaged up in a pink cast. It's not. That's a blanket rolled up next to her :)

Sleeping Beauty

Tuesday, April 9, 2013

April 9

Our little Elsie continues to do well. The swallow study hasn't happened yet; moving to Room 3 was a little stressful for her, as it's a bigger room with more babies, more people in and out, more noise. So they have given her a few days to stabilize. Also, they want to try a few things with her before the swallow study; such as placing a drop of milk on her tongue, or dipping her pacifier in milk and letting her suck it off. They really want it to be a positive experience when she does try feeding by mouth, so they are trying to prepare her for it and not rush. I think it should be happening within the next few days, but we'll see. They are also planning on her decreasing her oxygen flow today or tomorrow to 1.5 liters per minute. AND they removed her feeding tube from her mouth and it's now going down her nose. Apparently, she kept pulling the tube out of her mouth, so they put it down her nose so that it will hopefully be less irritating to her. This is also another baby step towards feeding by mouth.

Elsie and I have been working with an occupational therapist (OT) to teach Elsie about "positive touch". In the NBICU, preemies unfortunately experience a lot of unpleasant things related to their medical care; such as getting tubes stuck down their throat, getting blood drawn, having IVs inserted, and all other things that suck when you are an adult but are probably even more horrible to experience if you are a tiny premature baby. As a result of all this unpleasantness, preemies are more susceptible to developing aversions or hypersensitivity to touch. Meaning, Elsie's been through so much that when she hears someone approaching or feels someone waking her up, she kinda braces herself, like, "What are they going to do to me now? Whatever it is, it's probably not going to be fun. Earth kinda sucks." Just kidding, Earth doesn't suck.

Anyway, we are trying to work with Elsie to teach her that not all touch is negative. The OT who has been working with Elsie has made a list of some of Elsie's "Avoidance Signals", which are things that Elsie does to show that she is feeling stressed out. Also, there is a list of "Coping Skills", which are things that Elsie's parents and caregivers can do to help her cope and relax.

Yesterday, we were working on some positive touch techniques, and I think we rushed into it. Elsie's oxygen needs went way up, she was showing pretty much all of her avoidance signals, and was crying more than I've ever seen her cry. It wasn't super fun. So today, we took things a LOT slower, and the difference was amazing. Elsie stayed relaxed and calm the entire time, and didn't go up on her oxygen needs at all. The OT kept reminding me that "slow and steady wins the race," which if you knew me in high school while running track, that was definitely not my philosophy. But in this case, I will change my hasty ways and take things slow with sweet baby girl, if that's what she needs.

No tubes in my mouth!!

Friday, April 5, 2013

April 5

Little baby Elsie is 3 months old! Here's our dollar bill comparison pictures so that you can see how she has grown:

4 weeks old

8 weeks old

12 weeks old 
Sorry, I know the dollar bill in the last picture isn't in the exact same spot as it was in the first two pictures, but you get the general idea. She's growing :)

Elsie got moved to Room 3! She's in the big kids room, also known as the "growers & feeders", because the babies in Rooms 3-8 basically just need to grow and learn to feed by mouth before they can go home. Here's a few pictures of her new digs and also of the adorable signs that my niece Riley has made for Elsie.

I know, from this view it looks exactly the same as her last room, but trust me, it's a different room :)

Cute, huh!

As you know, today was Elsie's 90-day care conference, where Clayton and I got together with Elsie's doctor, nurse practitioner, medical-student-guy-who's-almost-a-doctor or like a doctor in training or something like that, and various other medical staff. And we go over all of Elsie's various treatments, important body parts, bodily functions, etc. Most of it is stuff that we've heard before, but here's a bit of what we talked about:

  • Elsie is down to 2 liters per minute on her high-flow nasal cannula. They're giving her a few days to make sure that she's stable on this setting, and then they will perform the swallow study to see how her paralyzed vocal cord will affect her ability to swallow. That will probably take place next week. If she does well, then we will begin learning how to feed by mouth.
  • Elsie's ROP is still being carefully monitored. If the eye doctor feels that it is getting worse, to the point where it might affect her vision, then they will perform laser surgery. Basically, with ROP, the blood vessels that are in her eyes are going a little crazy. When she was born premature, the growth of these vessels was interrupted, and now they are kind of over-compensating for that interruption by growing too much. Their growth is also affected by the presence of too much oxygen, which is why her oxygen saturation levels are so closely monitored, and also why it's important to wean down her oxygen use. Anyway, if the blood vessels grow too much out of control, then they can detach the retina and cause blindness. Before it gets to that point, the eye doctor would go in with his magic lasers and zap the rogue vessels. It's still possible that the ROP might resolve itself and go away on it's own. It is likely that Elsie might need glasses in the future, but hey, with Clayton's & my genetics, let's face it, she'd need glasses anyway. Sorry, kid.
  • It is quite likely that Elsie will still be on oxygen when she comes home from the hospital, and we talked about some of those logistics.
  • Speaking of coming home, obviously we can't see into the future and see exactly how Elsie is going to do, but it won't be a big surprise if she has to stay for an additional 2-4 weeks after her due date (May 3). That's just based on how long similar 23-week babies have had to stay in the hospital. But, you never know, she could be out sooner than that, or even later. We'll see.
  • Last but certainly not least: Elsie's brain. (This was actually the first thing that we talked about in the care conference but I'm saving it for last on this blog just to keep you captivated-- muuwwhha-hahahahaa!) According to the latest brain ultrasound, keeping in mind that it is just an ultrasound and not a more precise image like an MRI, Elsie's brain appears to be growing normally and without any noticeable damage. In her initial ultrasound right after she was born, her left side brain appeared to have bleeding from the brain's ventricles into the actual brain tissue. If this was the case, then the brain tissue where the bleeding was would be damaged or dead, showing up on an ultrasound as a gap or a hole in the brain. In yesterday's ultrasound, there was no evidence of any gaps, holes, or damaged areas that they could see. So as far as they can tell, it appears that at this point our girl is in pretty good shape. The doctor said that it looks pretty optimistic. We asked about the possibility of cerebral palsy or other things like hydrocephalus, and he answered that while you usually can't diagnose cerebral palsy until a child is 12-18 months old, his guess is that if Elsie were to have CP, then it would be very mild and show up as her being a little uncoordinated or clumsy. But right now, her motor skills are pretty good and she's not showing early signs of CP like favoring one side of her body over the other. She shows no signs of hydrocephalus. She is at a slightly greater risk to develop ADHD or she might have some other learning difficulties. But overall, Elsie's brain is looking healthy and happy!
Isn't that wonderful news?? I admit, I was expecting the worst, so I was pretty surprised at what we heard. But we are thrilled and so incredibly grateful. And while she may still have difficulties or unforeseen problems down the road, we know that she is still our daughter and we will always love her, regardless of physical or mental abilities. A very wise woman reminded me that ultimately, any of Elsie's "broken" parts will eventually be healed. It's so true and I'm feeling very thankful for my Savior and His great love for all of us.

Now come on, satisfy my need for attention and give me a comment if you loved reading this post! Happy weekend to all of you!

Wednesday, April 3, 2013

April 3

Remember this tiny little Thumbelina baby? It's crazy to look back and see pictures from the beginning. Her legs were thinner than Clayton's fingers. There are a few pictures that I never posted and I don't know if I ever will, because they scare me so much. We've come a long way, baby.

Sweet baby Elsie is doing great. She is up to a hefty 5 pounds 2 ounces. She is doing quite well with her breathing, and has been weaning down on her oxygen. She is at 2.5 liters per minute on a high-flow nasal cannula. It is my understanding that as soon as she weans down to 2 liters, then they will do the swallow study to see how much her paralyzed vocal cord affects her swallowing. And if all goes well after that, then she will begin learning to eat by mouth. Another step closer to coming home.

Elsie had another eye exam on Monday to monitor her ROP, and it turns out that she has gotten slightly worse. They will continue to monitor her eyes and will give her treatments if necessary to stop the disease from getting worse. 90 percent of the time, ROP will resolve itself and go away before it becomes a problem, so we are hoping that this will happen.

Tomorrow is Elsie's 36 week head ultrasound. Just after she was born, it was determined that Elsie had a grade 2 bleed on the right side of her brain, and a grade 4 bleed on the left side. Grade 4 is bad. Tomorrow's ultrasound, we've been told, will hopefully be able to let us know a little bit more of what we can expect as far as long term brain damage, if there is any. So far, our nurses have been pretty optimistic about Elsie's condition; she responds to noises, turns her head to look where the noise is coming from, moves her limbs, and other things that seem fairly "normal". I'm trying not to think about it too much, I tend to be like an ostrich who buries her head in the sand and hopes that her problems will just go away if I ignore them, but it is a nagging worry in the back of my mind. Clayton is quite worried.

Anyway, the ultrasound will be done tomorrow, and the doctors will discuss the results with us at Elsie's 90 day care conference on Friday afternoon. I can't believe that it has been 90 days, three whole months, since she was born. It has been a long and crazy ride, but you know, I thought it would be a lot worse than it has been.