Cry Baby

Today Vanessa was removed off of the conventional ventilator to a nasal CPAP. Which means constant positive pressure. She has two little prongs in her nose providing the pressure needed to keep her lungs open, but she is breathing on her own! This is a big step and we are hoping that she is able to stay on CPAP. Because of CPAP I was able to hear her cry for the first time since she was born just one day shy of 2 months ago. It was the most preicous cry you could possibly imagine.

Rollercoaster? Try Richter Scale!

I've been thinking a lot lately about this analogy that time spent in the NICU is like a rollercoaster and while I understand where it makes some sense, I really don't think it's the best way to describe it. To me, a rollercoaster is fast, and the moments of terror are quickly overcome by moments of excitement. On a rollercoaster, the scary parts are over quickly and you always know that the ride will only last so long. This is not the case in the NICU. While I'm sure I will reflect back on this time years from now, and think that it went by quickly; right now, being stuck in the middle, I can't help but feel that this will never end.

So, I've decided that there is a much better analogy that for me seems to make a little more sense. I think having a micro preemie is like living in Southern California on the San Andres fault line. Vanessa being born early would be our magnitude 6.0. It's scary, traumatic and takes a lot of rebuilding to recover, but all along you know that you are at risk for an aftershock, or even worse that the first quake was a before shock and you've got a worse one coming. So, you sleep with one eye open, and you never really settle just waiting for the next strike. And sure enough, you get it. Aftershocks.... Constant aftershocks, some worse than others, but never letting up enough for you to feel safe because you know that at any moment your world can be shook up. So you try to rebuild, but then you are broken back down.

Right now, all I'm trying to do is survive from one earthquake to the next. Is it easy? Absolutely not. But I'm trying to cherish the good days and make it through the bad ones, and remain strong for my family.

On the bright side, Vanessa is now 3 pounds 3 ounces, which is bigger than Travis was at birth. I don't know why it seems like such a big deal, but to me, from here it doesn't seem as scary. Even though Vanessa is still not breathing on her own, her size is becoming a source of comfort.

My Girl

Sweet Little Toes

Nice and Cozy!

♥ Cassea

For One So Small, You Seem So Strong

I've been contemplating and rationalizing my feelings a lot lately. I can feel my emotions swing throughout the day from pure joy to utter dispair. I fly off the handle at the most insignificant thing and I've been feeling especially selfish lately. I don't think it's fair. I know that I have so much to be grateful for, but it's hard to see that when there seems to be no end in sight. I've been thinking though, that a mother/infant seperation is traumatic. I explained one night to Henry how you see these shows on Discovery Channel about mother animals flying off the handle when there babies are taken from them. I can't help but think that maybe how I'm feeling is typical???

Nothing has really prompted this particular entry. We are still on the oscilattor, and although Vanessa is gaining weight like a champ, it feels insignificant when she still on the ventilator. People keep asking "At what weight can she come home?" and this question is so frustrating to me. I think it's frustrating because with Travis, weight was the main concern and pretty much, once he got bigger he was coming home. We are not there with Vanessa... Weight is not the concern, it's all breathing.

I'm ready for her to come home. I'm ready to pick her up at any moment just because she's mine. I'm ready to stay up all night watching her breath, because I know what a miracle each breath is. I'm ready to bath her. I'm ready to dress her up like the little princess she is. I'm ready to hold her, because it has now been 16 days since I held her last. I'm ready...

Henry thinks she looks like me

You'll be in my heart...

♥ Cassea

When it rains it pours?

What a week, and it's only Wednesday! The last few days have been so challenging. While we have much to be grateful for with Vanessa, we are still struggling with her lungs. Through Sunday, Vanessa had been consistently de-satting. What that means is that when she is taking breaths, the breaths she takes and the ones that the ventilator is helping with is not providing adequate support to keep the oxygen in her blood. Because she was having these spells and doing it so frequently, it became a guessing game of what could be causing this issue. The first idea was that she may have some sort of infection in her lungs, so they took a sample from her lungs and checked to see if it showed anything. In the meantime, the doctors decided to treat Vanessa with antibiotics to cover all bases. Unfortunately, this was not the reason for her spells. While I would never want Vanessa to have an infection, it would have been nice to know what was causing this issue. While waiting for the results from the sample, Vanessa continued needing higher and higher support on the ventilator. They did an x-ray and found that her lungs looked very cloudy, which means that they were full of mucus which is probably contributing to her breathing issues.

Monday morning, I head down to the hospital and the nurse practitioner explains to me that Vanessa has had a really rough morning, and that most likely she will have to go back on the oscillatting ventilator. I fell apart... While the nurses and doctors tried to assure me that this was not a step back, just a different kind of support that would be more of what she needs, I couldn't help but feel that we were moving in the wrong direction. And of course, this was my first day back at work. Seriously? I felt so guilty that I was going back to work on a day that it really seemed that Vanessa needed me. But I pushed through and went to work and kept myself together almost the entire day. It was so nice to see everyone, but I would be lying if I said that I really wanted to be there. Everyone tells me that there isn't much I can do at the hospital, and it's true, but I would much rather spend my days there than at work. Anyways, I called the hospital every 3 hours checking to see if she had been switched to the oscillattor, so by 9 pm, the nurse practitioner offered to call me if they had to do it. He said at that point it was a 50/50 chance that it would have to happen. I don't know that I got any real sleep that night. I slept with my phone in my hand the entire night, and at 7:30 am (of course the 5 minutes I was in the kitchen away from my phone) the nurse practioner called to let me know that they had to switch her to the oscillattor. I went down to the hospital to see Vanessa and felt so discouraged. This particular ventilator provides her breaths very quickly so it makes her shake and because it shakes, it is uncomfortable so they have to sedate her. It almost seems harder to see her like this now than before, because she looks so good! She is looking so strong and healthy and is really starting to put on some weight. She is now 2lbs 2 oz and tolerating her feeds like a superstar, and we are so grateful for that!

So, that's where we are... back on the oscillattor and trying to stay cautiously optimistic, because even for as positive as I am naturally, it's hard to not feel broken. Right now, we are taking it minute by minute and just dreaming of the day that sweet little Vanessa will come home. To top off Vanessa's breathing issues and going back to work, we spotted a mouse in the house! Really?!?!?!

It's all worth it for my little princess!

 And clearly, I have a hat obsession! The nurses LOVED this one so I thought I would share.

♥ Cassea

God gave me Preemies

I read this a while ago, and it just made me think that maybe God had a plan for me all along.

How Preemie Mom's are Chosen

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint...give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I am going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

God smiles.
"This one is perfect. She has just the right amount of selfishness. "

The angel gasps, "Selfishness! Is that a virtue?"

God nods.
"If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "momma" for the first time, she will be witness to a miracle and know it.
I will permit her to see clear the things that I see - ignorance, cruelty, prejudice - and allow her to rise above them.
She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"But what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles.
"A mirror will suffice."

♥ Cassea

Take A Deep Breath

Take a deep breath... I say this to Travis all the time. When he is worked up, upset or hurt, we always start by taking a deep breath. As I was standing by Vanessa's isolette a few days ago, her alarms started going off and I whispered to her: "Take a deep breath". I immediately thought, how profound. Something that I say all the time is literally what my sweet little Vanessa needs to do. Right now, the breathing is the one area that we are still struggling with. Although Vanessa is stable, she is still on the ventilator and she can't come home on a ventilator.  She isn't requiring more support on the ventilator, but she has these spells where her oxygen in her blood drops but she is able to recover. It's more frustating to me than to the doctors and nurses, because even though she isn't requiring more support, we haven't been able to ween her from the ventilator because of the spells.

The great thing is that everything else is progressing. She is currently only being nourished by milk. Almost all preemies start on a solution called TPN, which is "Total Parenteral Nutrition". The TPN is specific to each baby's needs based upon what they are lacking in their blood. This provides nutrition to the baby until they are able to be fully nourished by milk. It's crazy the medical advances, because today I was talking to a nurse and she was saying that before TPN, babies that couldn't handle feeds wouldn't survive. TPN was only created and used for preemies in the last 30 years, which makes me so grateful that my babies were born in this generation of technology. So, back to the reason for this medical lesson is that because Vanessa has done a great job digesting her food she does not need the nutrition from TPN. This means that her PICC line that was being used for the TPN has been removed, which lowers her risk for infection.

She is THE sweetest little girl. Today, even though she was having consistant spells of her blood oxygen dropping, I got to hold her. And by some miracle, and different from the last 3 times I've held her, she stabalized. Instead of continuing with the dips that she had been experiencing all day, she was perfect. I sat with her, heart to heart for almost 2 hours. It was one of the most precious moments of my life because I felt like her being with me was helping her.

Trust me, she was cozy the entire time. The nurse took off her blankies to show just how small Vanessa is. Of course, my styling daughter probably has more hats herself than all the NICU babies combined.

♥ Cassea

Eating, Eating, Eating...

Sorry that it has been so long since my last update, but you all can assume that no news is goods news. Basically, we are still were we were a few days ago. Vanessa is still on the ventilator, her settings have changed a bit, but she isn't necessarily receiving more support. It's hard for me to understand completely, but essentially they are providing more support to expand her lungs for a longer period of time to try to open up her lungs. The doctors think that the reason she is requiring the support is because she has fluid in her lungs. It's not an infection and the nurses try to suction it but they really aren't getting much, so today they gave her a diuretic to try to expel any excess fluid in her body. So we will find out soon whether that helps clear out her lungs. The doctor seems optimistic though, and really wants us to focus on her gaining weight. So that is our goal right now, for Vanessa to get bigger and stronger. It's amazing to me how much they are feeding her, it really isn't that much, about a teaspoon and a half, but compared to her tiny body, it seems like for her it would be eating thanksgiving dinner 8 times a day! But she is tolerating it, so obviously that is not the case.



Vanessa's tiny hand holding onto my thumb.

Vanessa's nurse today put a sweet little bow on her head. 

We have again begun renovations on Vanessa's room!