Saturday, March 30, 2013

First Bath!

Almost 3 months old and time for Elsie's first bath! Nurse Kelly wrapped Elsie up in a towel to help her feel more secure and to help keep her warm. Then she held her in the water while I soaped her up. I was really surprised at how well she did; Evje's first bath was a cry-fest. Actually, all of Evje's baths until she was like 5 months old were all full of tears. I was expecting Elsie to not like the bath, but she loved it! No crying, no whimpering. Success! I had to lift up several layers of chubby chin to wipe her neck clean. Gotta love those fat rolls!

After we got her all cleaned up, we wrapped her up in dry towels and put on a little bunny hat that a previous NBICU mom had made for all the babies. At least, I attempted to put it on, but it was a little tight and I didn't want to squish her little head trying to get it on. So it's sort of on.

Other noteworthy items: Remember when Elsie had her PDA ligation? One of the risks of the surgery is that a nerve from the vocal cords runs right next to the vein that had to be clamped, and there was a chance that this nerve could be nicked or damaged. So before Elsie can get permission to learn to feed by mouth, she had to have an Ear/Nose/Throat doctor put a scope down her throat to look at her vocal cords. Apparently, your vocal cords are very instrumental (get it, instrumental? Vocal chords? Ha ha!) in the swallowing process. If they are not working, then you choke when you swallow and food goes down your airway instead of your esophagus.

Aaaand it turns out that Elsie's left vocal cord is paralyzed. I wasn't at the hospital when this procedure was done, so I didn't get to talk to the ENT dr, and hence, I still have lots of unanswered questions. Will this heal on its own? Maybe. What if it doesn't? How will it affect her voice in the future? I've never heard Elsie full-on crying, but I've heard lots of whimpers, grunts, and almost crying. Her voice works, so I don't know what this diagnosis really means. Right now, however, it means that she gets to have a "swallow study" done before she can feed by mouth. A swallow study is where they give the baby a colored substance by mouth, and then observe what happens. Can she swallow it, does she choke a lot, etc. One more little bump in the road. But relatively speaking, it is a small bump. We can deal with vocal cords.

Elsie's most recent eye exam showed no further progression of the ROP, which means it hasn't gotten worse yet, which is good. They will continue to monitor her eyes to see if it does get worse.

Happy Easter!

Tuesday, March 26, 2013

March 26

Look who's not on a CPAP anymore!

Good news! Elsie  is continuing to make progress with her breathing! On Monday, it was determined that Elsie was doing well enough with her CPAP that the doctors decided she was ready for the next step. So the CPAP is gone, and she now has a "high flow nasal cannula," which is seen in the picture above. I'll be honest, I don't know exactly what the difference is between this new thing and the CPAP, but I know that it's progress and that's enough for me. It also means that pretty soon, she will be able to learn to eat by mouth, and someday her feeding tube will be removed for good (Her feeding tube is gone in the picture because they took it out to put in a new one, but she still usually always has the feeding tube in her mouth).

Here's another cutie-cute picture sent to us from our favorite nurse when they were switching from the CPAP to the high flow:

Look at those eyes! Look at those chubby cheeks with no tape on them for once! And don't be fooled by this somewhat svelte-looking chin; tucked underneath the sleep-sack that she's wrapped up in is several more layers of chubby chin. I love it.

Here's a fun comparison shot from the last time Elsie had all tubes out & all tape off her face (Feb. 18.) Looks a little different now, eh?! She definitely did not have a double chin back then :)

Elsie is 4 pounds 8 ounces today. She receives 36ml of fortified breast milk every 3 hours, via  her feeding tube. I think that's a little over 1 ounce per feeding. Her eyes are still being monitored each week to see if the ROP is getting worse; her next eye appointment is tomorrow. In the meantime, we are loving the increase in snuggle time since she has been moved to an open crib. So happy that our baby is stable enough to be able to hold her on a semi-regular basis.

We love our little cutie!

Friday, March 22, 2013

Answered Prayers

That's a US quarter next to Elsie's footprints. I didn't think to get her footprints when she was first born, so these are just from a few weeks ago. Still small, but they were much smaller in January!

This post is a collaboration of my wandering thoughts as I drove home from the hospital last night. It seems that some of my more spiritual moments of reflection happen at this time. I was thinking last night of how the Lord answers our prayers in ways that we'd never expect, and how He uses the people around us to answer them. When I pray, I don't receive answers immediately and directly, like having a phone conversation. It takes me time to look back and recognize the ways that my prayers have been indirectly answered. I want to share with you some of my prayers that have been answered, and to make it easier for you to understand, I have made up a "conversation" between me and Heavenly Father. The "Me" parts are prayers that I have sent to Heaven, asking for help. The "Lord" parts are examples of how I've looked back and seen that my prayers have been answered, and I've made up what I've felt that His responses might be like if He were talking to me.

Me: Heavenly Father, I'm so scared/worried/uncertain about the future for my sweet baby. I don't know what to do.
Lord: Don't worry. Everything is under control, and I know what I'm doing, even if you don't understand right now. She will be ok, no matter what happens. In the meantime, I'm sending someone to visit you who has been down a similar road before, and she will bring you comfort.

Me: Heavenly Father, we only have one car, and Clayton needs to drive it to work each day. How will I visit my baby 40 miles away? We have Grandpa Sagers' big white truck that we use to feed the cows, but it would cost hundreds of dollars in fuel each week to drive back and forth. And can you imagine trying to park that huge truck in the tiny stalls in the hospital parking lot? We could use Joel's Durango, but it also takes a lot of expensive fuel. I'm scared to take the bus by myself (I know, I'm a coward), and it would take twice as long to get to the hospital, which is already a 50 minute drive. I don't know what to do.
Lord: Don't worry. I've got someone lined up who is generously going to loan you a car to use while Elsie is in the hospital.

Me: Heavenly Father, it's so hard to drop off Evje at somebody else's house for up to 4 hours at a time while I make the drive to the hospital, visit with Elsie for a short time, and then drive back. Evje can be so shy and sometimes she's clingy. I worry about her and the impact that this will have on her. At the same time, it's so hard to have to ask people  all the time to help babysit her. Asking for help is hard. I don't know what to do.
Lord: I know you love both of your daughters very much. I know how hard it is to be away from one or the other child. I understand that it's hard to trust other people to watch her for you. I know that it's hard, because I sent you to earth to your earthly parents. I miss you and worry about you, but I know that you have been well-taken care of, and so is Evje. And don't worry about asking people to help you watch her. I have sent several sweet, caring, and understanding people who are happy to help you in your time of need, and they will gladly watch Evje for you. Your relationships with these sweet sisters will be strengthened and more deeply appreciated. Any time you serve someone, or let someone else serve you, your relationships are strengthened and fortified with love.

Me: Heavenly Father, I'm so worried about our finances. I don't know what to do.
Lord: Ha ha, don't you worry, I've completely got this one under control! Just to name a few examples, I've got two incredible cousins who are going to set up a fundraiser for you. I have someone who will give you a gas card, so that you don't have to worry about the price of fuel while driving to see your precious baby. I've got so many kind and generous strangers, friends, family, and neighbors who are willing to share with you their money, their food, their prayers and their love. How about a brand new, still-in-the-box, top-of-the-line car seat that will fit a tiny baby like yours when she's ready to come home--for free? Don't you worry about money. Trust me, I will take care of you.

Me: Heavenly Father, it's so hard not to be able to be with Elsie, and to be so far away from her. Also, I feel so helpless. I do not have the knowledge or power to take care of her by myself right now, and as a mother, that's frustrating. I don't know what to do.
Lord: Don't you worry about Elsie. Like I've told you before, I know how hard it is to be separated from your child. But Elsie is in the best possible place right now. I have sent so many kind, loving, and thoughtful nurses and other caretakers who do have the knowledge and equipment to take care of your baby. These people will bring comfort to you, knowing that they care about Elsie, they care about you and your family, they want the best for her, and will give her the best possible care. In time, you will gain the knowledge and understanding that you will need to be a full-time mother for your child. Until that day, have patience. The time that you will have with Elsie (the rest of her life and beyond) is huge, compared to the few short months that she is now away from you. You will have her for eternity.

Me: Heavenly Father, are you there?
Lord: I am here, and I love you.

Tuesday, March 19, 2013

March 19

Let's celebrate!
So I get to the hospital today and Elsie is in a crib!! I wasn't totally surprised, given that she's been doing very well at maintaining her own temperature and close to 4 pounds of chub. But I was completely excited. Every day, she's getting closer and closer to being a "normal" baby, instead of the scary micro-preemie that she was when she was born.

Elsie is 4 pounds and half an ounce today. While in the crib, she is dressed in a long-sleeved shirt and then wrapped in a fleece "sleep sack", and finally covered up with a blankie and a hat. All of these layers help to keep her toasty warm. One of the cool parts about being in a crib is that when Mommy wants to hold her baby, all I have to do was pick her up. No lifting up the lid or moving the sides of the isolette, no maneuvering countless tangled cords through the holes in the isolette to make sure that she stayed plugged in to everything.  Nope. I just lifted her up and took her cords with me. And then we snuggled. It was quite lovely. The nurse said that it seems like Elsie is really enjoying being out of the isolette. She likes being all wrapped up in the sleep sack.

Doesn't she look like a little baby doll toy?

The lovely view that greeted me when I walked into her room today

There is a baby in there somewhere underneath all of those wrappings

She has her hands up over her face so you can't see much but she's so snuggly

So that's the good news. The potentially bad news that I received today was that Elsie is in Stage 2 of ROP. ROP is an eye disease that commonly affects preemies, and can potentially lead to blindness. Right now, they will continue to monitor her eyes each week, and there are treatments if she gets worse. Also, with about 90 percent of infants with ROP, the disease resolves itself before it becomes a problem. So it's not a huge issue (YET) and most likely will go away on its own. Hopefully. I'm trying not to worry about it too much. Instead of worrying, I am celebrating with this little monkey and her handsome father. Thanks to cousin Chantel for the balloons and celebratory sparkling cider!

Monday, March 18, 2013

March 18

To those of you who are having anxiety because I haven't posted anything for several days: relax. No news is good news :) Basically, nothing significant has changed with Elsie and I've been too busy to think up anything interesting or inspiring. I have been going a little crazy with nesting. I know I'm not pregnant, but I've still gotta get stuff ready before this baby comes home! And to be honest, I kinda hate the word "nesting". So I'm going to pretend that I just said that I've been going a little crazy with spring cleaning. "Nesting" is right up there on the top of my annoying word list along with "prego" and "baby hungry". Anyway, I've been cleaning and organizing and trying to get things taken care of, and in general, creating more of a mess than it was before.

Elsie is still doing good on the CPAP. She didn't have any significant downturns after stopping the steroids, but her oxygen levels have been in the 40s, which means that she's working hard to breathe on her own and needs support, but is still doing well enough that she doesn't need to go back on the NIPPV CPAP.

Elsie is also gaining weight steadily; she was 3 pounds 14 ounces on Sunday evening, so we're expecting to hit the 4 pound mark any day. However, she's mostly just storing the weight away on her chubby little body, and isn't getting significantly taller. Just fatter. Her double chin is absolutely enormous, and I just adore seeing the little tiny fat rolls on her thighs, where they used to be as thin as a pencil. I've never had a chubby baby before. Anyway, they're cutting back on her feeding a little so that she doesn't turn into a 4-pound blimp.

After she reaches 4 pounds and can reliably maintain her own temperature, which she has been doing really well lately, she will be gradually moved into an open crib instead of an isolette. She will then be able to wear clothes & hats (mostly boring standard hospital-issued clothes, but still so fun to think about putting her in tiny clothes!!) and be wrapped in blankies like a full-term baby.

That's all I've got for today, folks. I hope things are going well for all of you. Thanks for all of your continued support.

Tuesday, March 12, 2013

March 12

Right now, our little Elsie is doing great. On Sunday night, she was able to progress up from the type of CPAP she was on (it's called NIPPV) to just an actual CPAP. I started to type out the difference between the two, but if you're really curious enough to know, look it up or ask me in person :) I'm not confident enough in my medical knowledge of various breathing apparatus to explain it here, in case I explain it completely wrong and end up sounding like a moron to any medical professionals who might be reading this blog.

Basically, the most important thing is that it's a step-up from where she was, and that it's progress. However, now that I've said that, she has also just finished her second round of steroids. Aaaand, the last time Elsie finished the 'roids, she kinda crashed and eventually had to be re-intubated. She might crash again, but she might not. AND the good news is that if she does need some additional support after her steroids wear off, they can put her back on the NIPPV instead of being intubated. Yay!

Here are some lovely cell phone pictures for your viewing pleasure:

Cute little bow!

Love pictures with something else with her to show the perspective of her size

And last but definitely not least, the stars and the moon were in alignment, because both Elsie and Clayton were feeling well, and Daddy finally got to hold his baby! Every other time, either Clayton was sick or Elsie wasn't stable enough to be held. So here's the proud papa holding his little girl. PS, he didn't want me to take pictures, so don't embarrass him :)

Happy day!

Monday, March 11, 2013

Money money money, it's a rich man's world

We just got our first Explanation of Benefits from our insurance company in the mail today for Elsie. I was expecting it to be pretty ugly, after all that she's been through. And it was pretty ugly: almost $60,000. And then I noticed that this exorbitant amount was only for her first month! All I can say, is that I'm ever so grateful that we had insurance when Elsie was born, and so thankful that she qualifies for Medicaid as well. I can't imagine trying to pay off $60,000 for one month in the hospital.

Anyway, I'm not complaining about the cost, I know that the state-of-the-art medical technology that has kept Elsie alive is expensive. I'm grateful for it, and she's worth it. I thought it might be interesting to make a little list on the blog here of some of the costs for your viewing pleasure, in case you are curious about the price of being a micro-preemie, as well as to keep a record that we can look back at someday in the future.

  • Each day at the hospital costs between $972.83 and $1,035.36. Per day. Wow. And that's not including things like x-rays or diagnostics. Those are extra, of course.
  • PDA Ligation (heart surgery) cost $4,098.62; the anesthesia for the surgery cost an additional $1,738.
  • The "ambulance" ride to PCMC, which was not actually an ambulance but was an isolette on a gurney that was walked down the hall and through several elevators, cost $6,406.66.
  • The procedure that was done at PCMC (looking at her intestines) cost $568.41.
  • "Imaging", which I'm assuming is x-rays, cost $93 each time it is done. Elsie had 5 x-rays during the first month.
Like I said, these are just a few of the costs from her first month of life. I think it's interesting to see the price tag that is attached to these tiny babies. I've heard from a few friends with similar stories, whose baby's first year of life cost between $1-2 million dollars. Crazy!

I haven't updated for a few days because there is not much to report. Elsie is continuing to do well. She reached 3 pounds last week, and has a little double chin. So funny. Clayton and I are going to visit her this evening and tomorrow morning. It is our tenth wedding anniversary today, and instead of the vacation that we had been contemplating before Elsie was born, we will be celebrating a little closer to home. 

Wednesday, March 6, 2013

March 6

Today we had Elsie's 60 day care conference with her doctors and nurse practitioner. Overall, it was fairly uneventful and there was nothing really new or earth-shattering. We discussed Elsie's progress in various aspects of her life, such as:

She had another eye exam today, and is still showing no signs of ROP, which is great. She is gaining weight nicely, and is almost up to 3 pounds. She is pretty close to the 10th percentile on weight.

Her biggest concern at this time is to get her breathing under control. She's not wearing this funny CPAP (called Hudson prongs) with the "helmet" anymore-- I guess the prongs kept falling out of her nose. So she's back to the CPAP that she had on before (called Ram prongs), which I just realized that I don't really have any pictures of her with except for this fuzzy one:

The nose prongs on the Ram are more flexible than the Hudson, so they stay in better.

Anyway, she's making progress with her breathing, slowly but surely. She will very likely be on oxygen when she goes home.

The next goal we are working toward is getting her breathing regulated enough so that she can learn to eat by mouth. She will have to have progressed off the CPAP and have just a nasal cannula before this can happen.

She is still not showing any obvious signs of brain trauma, such as her head growing too quickly. I don't think they can tell a whole lot right now if she does have brain damage, and I don't want to ask. It's another "wait and see" that I'd rather not worry about right now.

All things considered, Elsie is progressing well. I'm trying to think of something profound or interesting to say, but it's just not coming. Good night, everybody.

Monday, March 4, 2013

March 4

Our little Thumbelina is two months old today! It's hard to believe because it has gone by so quickly.

Good news! Elsie was extubated this morning, and is back on the CPAP. She is on a slightly different type of CPAP this time that will hopefully help her lungs stay inflated without making her overly tired from the effort. This one is different in that the prongs that insert into her nostrils are slightly longer, and are surrounded by a sort of tape placed on her nose. The tape has two little holes for the prongs to go into her nostrils, and then the rest of the tape provides a seal around her nose so that no air can escape out. Then she has on a little hat with straps on it to help keep her mouth mostly closed so that not as much air can escape out of her mouth. It looks like she's wearing a little helmet, and the hat is sitting down so low that it pretty much covers most of her face. Here's a picture so that you can see what I'm talking about:

I know it's kinda hard to see or understand what you're looking at, but starting at her chin and going up, there's the strap that helps close her mouth, her green feeding tube, then the CPAP. The two prongs are going into her nostrils, and then there's the "tape" around her nose that is providing a seal. You can't see her eyes in this shot, as they're covered up with the hat.

Here's another angle from when she was on her tummy. The two prongs are going into her nostrils, and you can see the "tape" on her nose a lot more in this picture. It looks like she has a little piggy nose from the tape, so cute.

One more shot, just a little closer up.

We're excited to have the breathing tube out, and hopefully she can keep it out this time for good.

Other good news: Elsie had her first eye exam last week, and the results were optimistic. Preemies are at risk for Retinopathy of prematurity, or ROP, which is an eye disease that can cause blindness or vision problems.  At this time, Elsie is NOT showing any signs of ROP--Hooray! Of course, they will continue to monitor her vision very closely, and it is possible that she still might get it, but as of right now, she is ROP free.

Elsie is still digesting her feedings very well, which is always a good thing. Her feeding amount has been decreased a bit, because she was gaining a lot of water weight. She was given a few doses of a diuretic to help lose some of the excess fluid, which can contribute to difficulty breathing. It's such a fine line between gaining weight sufficient for healthy growth, and gaining too much weight that builds up excess fluids.

While talking to the nurse today, she asked if I had received a steroid shot before Elsie was born. I did, but it was only given to me an hour or two before she was born. The nurse said that since Elsie was born so quickly, she didn't have time to get the full impact of the steroids that I was given. BUT, she also said that Elsie was right on par with where a 23-week preemie should be, and most other 23-week preemies had the steroids given to their mother 24 to 48 hours before they were born. So given the fact that she did not have as much exposure to the steroids as other babies had, and she is still doing as well or better than they are, then this just shows that Elsie is pretty much Superbaby. I contribute her good health to the plethora of prayers that are continually offered in her behalf, as well as her strength of spirit. I know that there are people out there praying for Elsie, and we are so grateful for each one. Whether you are family, friends, or complete strangers, Baptist, Presbyterian, Mormon, or something else entirely, we are thankful for your prayers and support.

It's hard to look at pictures like this from when Elsie was first born. You've come a long way, baby.