My Old Foe... We Meet Again

Sooooooooo...

Yes, I'm getting mastitis again. The doctor that saw me said that we have to stop meeting this way. 

Thankfully! I caught it pretty early on and I hope I will bypass the fever and misery part. I'm starting to think though that my chest is out to get me. 

Out with the Old

In with the new. 

It just got a whole lot quieter in the room.

 

Zoinks!

I have been fighting the ventilator quite a bit this morning. The doctor sees that as a good sign, that I no longer need Screech's Robot to assist my breathing.

I will be transitioning from the HFOV to a mechanical ventilator today, with the hope that I wean off of that soon as well.

Dad says the sooner he gets to hold me again, the more comfortable he will be going back to work so he can make money to buy me all my princess clothes and Frozen toys. And see me on the weekends too. Yay! It may still be a long-haul yet, but things are definitely looking better and more stable by the day.

Footloose and Fancy Free... Almost

Elizabeth is still a bit swollen today but they plan to change her back to the other respirator. They said we might even get to hold her later today. Yay!!! Now to work on getting the swelling down.

Baby Calisthenics

I don't know that calisthenics is the right word, but it's the one I thought of as I watched the nurse move her arms and legs around to help her stretch a little. She then put this in her fist and Elizabeth grabbed right onto it.

First toy? She was still holding it when we left. I'm not sure the purpose of having her do that while she was moving her arm, but I thought it was cute.

Kangaroo Care

This is what skin to skin looks like when you have a nice, stretchy shirt. This was taken a few weeks ago by my dad. 

And...

My helicopter chariot was not in network for us so they sent us a form to sign if we wanted them to assign an advocate to get our insurance to cover as much of it as they would and we would have to pay the rest. We signed and hoped for the best and we must have gotten a dang good advocate because Justin told me:

Paid in full. 

God is good. 

Hey Fozzie, Turn Left at the Fork in the Road

As far as the oxygen saturation on the machine, she is technically on room air. She's still hooked up though. They took a blood culture and there's nothing growing in it so far. I can also tell that her swelling has gone down a bit. Yay! 

Turn leeeeeeeft!

We are Family

Today she is still on the ventilator but they are slowly easing down the oxygen concentration and plan to wean her off of this one instead of putting her back on the other one. She has gotten swollen so they will give her fluids and something to get that back down. 

They suspect that she will probably turn around in the next few days and hopefully get to wake up. They were going less on the sedation but I guess she got a little grumpy last night and started fighting the tube. 

No surprise to me...

Justin and I found a cheap rate at a hotel with a pool and so we got to relax a bit and get a load off along with a change of pace. It certainly helped to put me in a better state of mind when we came in to see her. I see her feet and hands move on occasion and she will even grab my finger a little if I play with her hand. 

That's what gives me so much hope, knowing she's still fighting the good fight and she's still spunky. We will get through this. We are family. 

Our Little Fighter

In case you haven't seen it on Facebook, during the night our daughter's O2 level started to drop. They put her on an oscillating ventilator and got her stable again. She is steadily improving we are happy to say. They also have her on some meds to help her pee and we're guessing they think as we do, that she's having trouble from the anesthesia and everything that's been pumped into her. So now they're trying to get her to pee it all out. 

Any call that comes in the middle of the night is scary. But they were not surprised to see us show up half an hour later and they did all they could to make sure we were comfortable and had somewhere to sleep. I hope that she will recover fairly quick and be back on her way to poopin' and someday, eating. 

Extremes

 As many of you know, today marks an important milestone in Elizabeth's life as she had a successful bowel resection that will enable her to eat normally once she heals. It was one of the happiest days of my life, ranking up there with my wedding day and the day she was born.

Pictured here, several hours before her surgery, I'm reading to her one of my personal favorite children's books, one I've read to her repeatedly since she was around 20 weeks gestation in mom's belly.

The Hiccupotamus

What we failed to air to the internet right away was that today also happened to be one of the most stressful, and scariest days of my life.

Shortly after reading to her The Little Engine That Could (Not pictured), her face turned purple. Her O2 Saturation dropped into the mid 70s range, and she became very sluggish. All with a clear airway, while breathing with what seemed to be a normal amount of effort.

Rubbing her back, a trick that had worked in the past, was ineffective. I pleaded with my daughter,

"Hey! Come on, Liz. Stick with me!!"

and waited for the nurse to quickly wrap up the task shee was tied up with on another baby. With her help, I learned to firmly massage feet and back, jostling Elizabeth enough to effect deep breaths and bring her O2 up again.

This episode repeated itself  a number of times until for no particular reason, her O2 stabilized enough for us to tuck her in and get lunch.

The doctor ordered a CBC and Blood/Gas, both of which had unremarkable results.

Following her afternoon surgical procedure, Elizabeth pooped in her diaper before she even got back to the NICU.

So you can see, today was a day of both extreme happiness, and extreme anxiety.

I count my blessings that it ended well.

Drum Roll Please

She went on the way back to the NICU and continuously as I was trying to change her. Yay! I love immediate results. 

Evening Snuggles

Changed like a Dirty Diaper

Alright, we're now looking at 11AM for her surgery and... 

Bonus picture!!

We're getting our snuggles in as much as we can until we have to hold back on that for a few days. 

You Remind Me of the Babe

The babe with the power...

Mommy and Daddy say I am a strong and brave girl. They feel confident that I will do well in my surgery tomorrow at 10AM. I'm sure I'll just sleep through it like last time. 

Yesterday before they gave me more blood, they weighed me and I am 5lbs 10oz. I'm growing so fast! Hopefully this surgery will help me poop and then I can go home soon. Please pray for me. 

Five Weeks Notice

Oh hi! Today I am five weeks old and getting ready for another surgery. They plan to give me some blood today, though I thought I already had some. They prick my feet enough for blood. I guess babies like me tend to be anemic and I'm no exception. I am glad they want to make sure I am healthy as can be before I have another surgery. 

Mommy waited for me to look up for a long time to take a picture. I obliged but then right before the picture took I looked down. Hehe!

Daddy takes such good care of me. And I know my parents want what's best for me and that they trust the doctors taking care of me. I love my mommy and daddy. 

Bear Necessities

After talking with the surgeon and doctors, it's sounding like surgery is going to be necessary. We feel confident moving forward with this, especially if it means this is finally resolved. 

At the moment we are looking at Thursday for surgery. No time appointed yet. 

Answered Prayers

Stress is just a part of this experience, to say the least. Some days it's higher than others and I ended up in the pump room praying for relief. I felt like just talking and venting with our social worker would help but wasn't sure where to find her. 

I was almost done with my pumping regiment when I got a text from Justin telling me she had been moved to a private room. He led me there once we were done and lo and behold our social worker found us. We had a long talk in a private room which did wonders. 

But then to top it off, she popped back in and...

I burst into tears as she told us we should get out and have a date soon. Amazing how much God listens and helps with every little detail. We both feel so much better and Elizabeth has a quieter, private space to sleep. Plus we got some better explanations of what surgery might mean and since they are 80% sure she will need it, it's good to know more so we can feel better about it. 

Batch Pad

Hey, check out my sweet, new digs! Private room, baby!!

Roller Coaster

They say Sunday is a day of rest. Not that we had the most restful day, but I just couldn't get myself to blog until now. I needed a break from reporting each and every little change because it was depressing to go through. They took her off feeds today because she had spit up milk, then they had us try to feed tonight but she wasn't interested in it. It's just a cycle that spins round and round sometimes.

At the end of the day she's doing pretty good for being a premie and tomorrow will bring more challenges and hopefully successes. Thanks to all who joined our special fast today, it really means a lot. Hopefully we will see that sun peek through the clouds soon.

Suddenly, Back at the Bat Cave

When we got to the NICU she was all...

Then we went to pump while they put in a new central line. When we got back she was all... Here I am!

She plowed through her 2 mil of milk that we got to offer since she was rooting around. Felt more rumbles and just basked in how awake she was. We played with her for over half an hour and the nurses kept saying she was like a whole new girl. 

Yay! (Though we sure would appreciate you guys still fasting with us.) 

Bump in the Road

I just got a call from the NICU because they wanted to notify me that there had been a change. The doctor noticed that our baby has been pretty lethargic and a little pale. I know her temperature has been a little cool the past several times and the nurse tonight had said that could be an indicator of her getting sick. They drew some blood to test and then they started her on some antibiotics just in case. They will call again when they get the blood results unless there's nothing to be worried about.

Justin plans to fast tomorrow. Please, if any of you can as well, please fast for her. I know in the long run she will be alright, and Justin even said that perhaps the antibiotics might help with any inflammation she might have that's hindering her bowels from recovering. As I've taken to saying, everything happens for a reason and maybe this is something that will help her. I won't lie and say I'm not scared, much less not crying right now. This hurts almost more than I can bear, but I want to have faith and know that this is just one more bump in the road that we will get past.

Behind the Clouds

We went to visit Elizabeth again and a big storm was rolling in upon our arrival. We could hear the thunder softly in the NICU as we held her after her care was done. She hadn't eaten much the last time and had thrown up just a little. But at least they didn't seem too concerned with it, so I'm guessing it wasn't a bad color or something. She didn't have much interest in eating and I figured she must not be feeling well and her tummy needed time to process what it already had. It just seems to be her way to cycle through feast or famine.

Later on we ended up in the hospital chapel kneeling once again in prayer with the rain pounding down hard outside. We prayed that we could put it in God's hands and that we needed His comfort. As we stood up, I looked up through the stained glass and the sun burst through the clouds and shone right where we stood. And I realized, we are in the middle of a metaphorical storm, but it won't rain forever and the clouds will fade away. Sometime the sun will shine and the night will end, and we will see miracles. For now, as the song goes, tomorrow's another day and I'm thirsty anyway, so bring on the rain.

Through it Together

Winnie the...

Still nothing in that realm though it sounds like she is eating every time they offer it. The doctor said she would up her from 2 mil to 3. She even told us she thought we had made a good choice. She mentioned possibly down the road doing a constant, slow trickle through a line into her stomach to see if it can push stuff through. 

Here's hoping it resolves soon either way. 

Rumble in the Bronx

I hate to say it but the daytime nurse today wasn't the most encouraging and she gave us all of 30 seconds to try feeding her it felt like. We both felt a little down after and started to feel doubts. 

I felt so bombarded by the adversary to despair and doubt. When we decided to come to her 10PM care I almost couldn't get myself to do it because I worried it would be just more of the "nothing yet". Justin parked and shut off the car, but before he got out I grabbed his arm and asked if we could pray together. 

We went in and her night nurse told us that she had eaten BOTH times she had fed her and she ate again for us too! And this time and earlier today I felt multiple, looooong, bubbly rumbles. They were easy for her too, she hardly had to strain. 

We're so happy for her and what a faith boost! I keep thinking of a line in the scriptures, Help Thou, mine unbelief. It's amazing what God can do when you go to Him and ask for faith. 

And this onesie was on her but then they had to take it off in order to change her central line. They will put it back on when they're done. 

Sunglasses

Well my Mastitis is definitely, most positively on the run now. Yay! It's more pink, less red. More small, less large. And a big thanks to my mother-in-law for buying an electronic copy of Corrina Corrina on her Amazon and giving me her log-in info so I could get on and watch it. Thanks!! There was a lot I didn't remember and I really loved the whole movie. I highly recommend watching it if you never have. Here's a clip of one of my favorite parts.

Sunglasses Song

Monthday!

Mommy and Daddy say I am one month old today. It must be true because they took that thing off my foot that glowed and smelled bad. Boy am I glad that's gone. Daddy said it monitored my oxygen and pulse and those have been fine for a long time. Mommy also brought me presents.

Two coolers jammed with milk. She says I will get to drink it someday. I think she's a power pumpin' mama. I'm so glad she does this for me, even when it hurts. I love you, Mommy. 

Daddy tried to feed me but I was just so tired. He really takes such good care of me, holds me, plays with my hair, and encourages me to poop. I love you, Daddy. 

Mommy held me after Daddy and she said she felt and heard some bubbles moving through my pipes. Am I plumbing now? She got so excited though so maybe I'll have a surprise for them soon. A little birthday present for them if ya know what I mean. *wink**wink*

I Know, a Lot of Posts Today

Mom says I remind her and Dad of Maggie Simpson with the way I love my binkie. First Elvis, now this Maggie person??

But she asked the nurse what my last recorded weight was in pounds and the nurse showed her on a conversion chart that I am 5lbs 5oz roughly! I've gained almost two whole pounds. Yay me!

The Aftermath

After we gave them our decision, out came the tube and in went the binkie. And a few seconds later we start hearing a loud sucking sound. 

I think she was happy about it. 

Decision Made

After getting reports to read of all her procedures and praying in the chapel, we felt strongly to go ahead with trying the feeds again. We especially requested that they start with the colostrum that has been sitting unused in the freezer forever. And perhaps that was because she needs it at this time. 

Continued prayers are felt and appreciated. 

Decisions...

Just to give you an idea, this is what Mastitis looks like and it hurts as bad as it looks. So glad it's on the mend if my lack of fever says anything.

All that aside, the surgeon called Justin this morning and lent some clarity as well as laid out some options. Here are the key points:

1. The barium actually went past the point where they had joined the two ends.

2. Still nothing a truck could go through, as Justin put it, but the fact that she had a few smudges makes them wonder if the barium did break something up.

3. Her emesis has cleared up.

Here are the choices:

1. Try doing feeds one more time and see if it works itself out.

2. Surgery tomorrow to fix it.

If we opt for the feeds instead of surgery and it doesn't work, surgery wont happen until after next week when the surgeon rotates back on. Worst that could happen though is she ends up with the tube in her stomach again. Our concern with surgery is if they remove more intestine will she have problems with absorption and such. It looks like an obvious choice, but we plan to pray about it and really give it some thought. Weigh the options and such. We will let you know.

This Little Light of Mine

I woke up in the middle of the night and Justin was gone. Unfortunately I shut my alarm off and then fell back asleep. I popped back awake at 1:30 and jumped out of bed to quickly pump so things wouldn't get worse. I realized Justin was still gone, but at least this time his phone was gone with him so I gave him a call. He couldn't sleep so he had gone to visit Elizabeth. She hadn't pooped since the last time we were there. :(

As for me, I think my fever finally broke last night and I'm feeling a lot more normal. Sometimes I could swear the red spot looks better, other times it looks like it did when I first saw it and about wet myself with how bad it looked. But since the persistent fever seems to have gone away I'm going to take that as a good sign that the medication is working. Justin still seems to be feeling fine, just working through his antibiotics like I am. Which reminds me, I need to find some probiotics. In other news, I will officially be released from my church calling on Sunday and though I am a little sad, I'm also very relieved because I'll have time once we finally get home to really adjust to motherhood. And I don't have to feel bad about leaving the Young Women's presidency hanging. They will get the help they need.

In other, other news, one of the front desk ladies named Mary looked at me I think yesterday and suddenly declared that I looked like a child star she couldn't remember the name of. I immediately said Christina Ricci because that's what I used to hear all the time. She shook her head and kept trying to come up with a name. I told her that Justin thought I looked like Tina Majorino but that name didn't ring a bell for her until I remembered that as a child she had been in the movie Corrina Corrina. I'm not so sure that I see it, but Kristin (Elizabeth's other nurse) began to nod her head and say she could see it. Eh? I guess you be the judge. I don't hear Christina Ricci anymore, but I've heard Tina Majorino a few times now.

Now I want to go find this movie sometime. I remember liking it.

Smudges

Elizabeth had a smudge on her diaper and they got excited until they put her down and she promptly threw up. From what I was able to understand they were considering starting feeds again until that happened. So this afternoon we came in to this:

At least now she's more comfortable without having to bear down so much. She also had another smudge of poop while we were here. If she keeps that up and the emessis clears happy day! If not, it's looking like surgery on Friday. 

Sorry

No updates heard as of yet. We're going to go find some breakfast and then head to the hospital for one of her cares and see if there's any news.



And Mastitis sucks. Like, really, really, really sucks.



That is all.

Unsolved Mysteries

Ah, there's my sense of humor. And I bet the theme song of this show is now playing in your head. My work here is done. 

After the nurse had taken my information she gave me big hugs and went to get a doctor. In popped a midwife with a prescription already in hand after the nurse told her my symptoms. 

Mastitis. 

Thankfully very solvable with meds so I will start those today. Thankfully I'm not so sick that I can't see my baby which is where I'm at, but I've been ordered to rest and take it easy on myself today. And of course, pump, pump, pump. 

And another update within an update!! Update inception? Her ultrasound for her spine/dimple came back normal!!!! No issues with her spine. Yay!!!

Storms

I honestly am just not finding something funny to put with this post, though usually I can. I find laughter is a great medicine in life, but last night when I woke up with chills a slight fever and then a few hours later I woke again with a fever of 101.3, my humor just ran out. We've gotten the fever back down into the 99 range, but it keeps bouncing around. I feel hungry, but not sure if it's safe to eat much right now. No diarrhea or vomiting, but it's enough that I feel I shouldn't go into the NICU until I get this resolved. There's a few things I think might be the cause and we're going to try to get in earlier to obstetrix as I had an appointment anyway.

I'm seeing how easy it would be to question why, to get so upset because today she turns four weeks old and I already worry about what the results of her contrast will be. I wonder if I'll feel well enough to go to Thatcher tomorrow, or if she'll get slated for surgery today or tomorrow. So easy to despair, right? But, I just don't see what good it would do me. And last night, I shared this picture on Facebook:

How ungrateful would I be if I got upset and questioned why God is putting us through all of this, when I know He has sent Angels to be with us? Considering how bad my condition is not, I feel He is blessing me and perhaps I will get to see my baby today and wish her a happy four week birthday. I pray for comfort, and for healing. Thank you all again for your thoughts and prayers on our behalf.

Family Time

They've started taking her off the TPN for a few hours at night to give her liver a rest. This means she is completely free of tubes and wires for two hours. Which means we can take her back to one of the family rooms in the NICU and have just us family time. 

Hooray!

I think we may get addicted to this. 

They taught us a way to bundle her while standing and Justin was trying it out. Yay for family time! I got so happy over just being able to walk around with her and not get tangled up in lines. So nice!

We're Going to Pump... You ALL Up!

It just seems like pumping is the theme of our lives right now. First Lizzy and I got pumped with steroids before she was born to get her lungs ready for just such an event. This morning Justin got pumped with fluid to hydrate him. I have to pump every three hours so someday we can feed it to our sweet girl. And tomorrow at 11:30 (and I mean that very casually because you know, hospital standard time) they'll pump barium up her whatsit and see if they can figure out what's clogging up the pipes. When we went to one of her care times earlier the ultrasound was just finishing up. Yay! I hope we get results on that soon. And can I just say that picture above of Ah-nold still cracks me up because he looks kind of cross-eyed. 

Tee-hee!

The Castle of Uuggggggh...

MAYNARD: It reads, 'Here may be found the last words of Joseph of Aramathea. He who is valiant and pure of spirit may find the Holy Grail in the Castle of uuggggggh'.

Well I woke up around 1:40 to Justin shivering badly. We debated what to do for a bit and then decided to come to our favorite hospital to get him checked out. I'm ready to think this is where Arthur was headed in the Monty Python movie considering how much groaning we've all done here. 

We're suspecting some shellfish he had at a Chinese buffet we went to the other day, in other words food poisoning plus dehydration from having food poisoning. Hopefully not a long visit for Justin this time. I had to run down to the NICU to pump and saw this little cutie looking around. 

Man, what a ride. No more seafood at buffets I think. 

The Kindness of Strangers

Today when Justin ended up sick and I went to see Elizabeth without him, and then to watch her struggling so badly with her bowels to the point that she would start crying sometimes, I had a bit of a melt down. I ended up in a hallway, talking to a friend from Morenci and just crying it all out. As I sat there talking, a janitor was sweeping the hallway and when he was done he left and I didn't think much of it. But he suddenly came back with a cup full of water and a small box of tissues and I was just overcome. Then a lady came out of the NICU who had been probably visiting a grand baby. She reached down and touched my free hand and quietly told me she would pray for me and my baby. She started to walk away, but then doubled back and said she knew I needed a hug and let me cry on her shoulder for a minute. I am just amazed by peoples' kindness, even when it's just quick glances with sympathy in their eyes or a smile for us. 

Oh! And Cassidi got Elizabeth a girly bag for her courage beads. Yay! I couldn't resist it, it's so cute and pink and sparkly. And it's not turned inside out. :)

Hungry, Hungry Hippos

Mommy came to see me today, but she said daddy wasn't feeling well and couldn't come. I was sleeping really well when she came but they had to wake me up to do my cares. Man...

Since they stopped giving me milk I am hungry which doesn't help with my tummy being uncomfortable. I'm so hungry I could eat my blanket.

 

Mmmmmmm blanket... Om-nom-nom.

Mommy thinks when I yawn I look like I'm roaring like a lion. Rawr!!!!!

Tomorrow they will look at my bowels, whatever those are, and see if there is a block that is causing all the trouble. I have a feeling I won't like it. They also want to make sure my spine is ok because I have a dimple on my butt. They think my spine might be tucked into that dimple and cause problems as I grow but they say that's rare so hopefully not. I want to grow big and strong. 

I hope daddy feels better soon. I miss him. 

A Doctor, a Nurse, and a Baby Walk Into a Hospital...

We got a little more clarification last night, at least as much as you can get with a Russian nurse and a Philippino doctor. (They are both very nice and take good care of her, I just admit that it's not always easy for me to understand them.) But what we learned is that they didn't see anything remarkable on the X-ray so they want to do the contrast to see if there is a blockage somewhere. If there is, yes, this would require another surgery. I'm not sure what might cause a block that would need that, but it might be the bowels themselves perhaps, more than something inside of them? At any rate, speculating and wondering will only spin us in circles and lead to more stress and worry.

What we need more than anything right now is prayers. Whether she go into surgery again, or her bowels finally wake up and start working, we need the peace, comfort, and healing that only God can bring. Please pray for us, but most of all, please pray for our little girl. She has been blessed with a fighting spirit and a loving family that are all rooting for her. Thank you all for your kindness, your faith, and your charity.

Muppet News Flash

The surgeon looked at her X-ray and she decided to stop the feeds for now and she will talk to the surgeon that worked on our daughter and see if he wants to order a contrast. I'm guessing this would happen Monday or so but I wish I knew if she saw something or if it was the lack of something that concerns her. I just hope and pray this won't mean another surgery. Prayers are appreciated.