Bound to happen

It was bound to happen, with the year we have had.

Everyone told me it was on the horizon, and joked it was perhaps on the way already.

I was in denial.

Someone else, maybe, but certainly not me.

Today I took a good look in the mirror for the first time in ages.

Gray.

I found a gray hair.

Oy vey.

Old age has officially arrived, in the "stress induced expedited form".

I suppose acceptance is the only option; I have felt 32 going on 42 for the last few months anyhow.

Tessa had a good day.

Thank you so much for praying for her.

Her feedings went smoothly, her sats were stable, and her belly is back to a normal size.

My mom took day shift today, and said she did not spit up once.

I am so, so thankful.

Thank you for praying for her, and all your words of encouragement for Josh and I.

Backwards

We seem to be going backwards.

Tessa used to have endurance for days before needing to go back on CPAP.

This time she made it less than 24 hours.

Frustrating.

She hates CPAP, so I wish she would hurry up and breathe so we could be finished already.

At her 2pm feeding, I was holding her upright against my chest. I noticed a little milk in her mouth, so I tipped her back to see if she was choking.

She started puking all over me.

At her next two feedings, she did the same thing.

Not sure why, but she has not done it before today.

Actually, I think I might know why. When they restarted feeds on Sunday, she only got 5ml every three hours. She is now up to 40mls every three. That is quite a huge jump in 9 days time.

I am praying she tolerates it better from now on.

She had a big belly again this morning- it went up 4.5 cm, which is a lot for a little peanut. The scale on her bed must not be working well either, because they weighed her this afternoon and she was up 7 ounces.

Overall, she had a very "off" day.

I ended up staying with her until around 8pm, then coming home to put the boys to bed. Bryce was already asleep, so Kayden and I ate a Tombstone pizza in bed together, complete with Cokes. Talk about lack of discipline these days, huh?

Josh decided to spend the night with her. If he looks a little groggy tomorrow morning, now you know.

Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28.

Tessa's home

I thought I would give a little perspective today and show you how far she has come:

I had a chat with the neo today, who so wisely reminded me that I did not even know if she would have lungs; therefore it might just take her a little longer to get off CPAP than most.

Good reminder.

She is off today, but there is still something up with her right nostril that makes it difficult for her to breathe deeply. Seems to me like she is still working too hard.

We are still praying that she stays free from infection. It was a rough weekend when she was showing signs of illness. Neither Josh or I wanted to leave her, and the absolute worst place to try and get sleep is the NICU.

So.much.dinging.

It echos in my ears even when I am home.

Her IV came out today, so hopefully that will remain out as she continues feeding.

I thought I would give you a glimpse into our world lately:

This is the nurse's station, which is in the center of eight private rooms.

I thought it was funny that this picture is right outside Tessa's room.

We get to put personal effects on this board, and I love having this space to personalize. Each of the little note cards has her achievements on it- getting her PICC line out, first cuddle with mom. The top left is a gift Rachael surprised me with- her little hand and foot! On the bottom is one of my favorite index card from Kristi, with Jeremiah 29:11-13.

A good friend of mine runs Tiny Tales, and sent me this kit. This style of memory keeping has been super convenient for me these days, because I can easily jot stuff down on the spot and keep it all in one place.

Tonight was the first night the boys came since the top went up on Tessa's crib.

I may have mentioned this a time or two, but I am a germ-a-phobe, so this was a big step for me:-) Kids are notorious for being a tad germy.

Kayden came in, took one look in her bed, and asked, "Hey, where's Tessa?"

He then noticed her in my arms and squealed with glee.

"Can I hold her?" he begged.

"Yeah, can I hold her?" said Bryce.

While I did not let them hold her, they were so happy to see her and all her tiny features. They each pointed out her mouth, and eyes, and nose, and feet, and fingers. They were enthralled at how much she moved, I think.

She cried a few times, and they thought that was positively hilarious.

Kayden tried to shove her pipe in her mouth on at least three occasions. I had to keep grabbing it before he shoved it in her nose.

Tessa is down to 4 lbs, 14 ounces tonight. I am thankful, because she looks a little less puffy. I like weight gain, but not fluid weight.

A lot of the same prayers:

higher hemoglobin levels

lower respiratory rates

no infection

smooth feedings

and if you don't mind, please throw in a few prayers for our family in general. With the start of school, life has gotten even crazier.

Thank you, as always, prayer warriors! I appreciate YOU!

Thy Mercies...

are new every morning.

I came home last night to a clean house, non-stinky bathrooms, floors mopped, lights and dog gates fixed, pictures put back on the walls, groceries in my fridge....it was the purest act of love my parents could have given me.

It shouldn't matter, but it does make life seem more normal when my house is not absolute chaos.

Tessa is having a better day.

She has started pooping (thank you to all who prayed for such a crazy thing:-)

Her respiratory rates are still on the high side. They normally want babies to breathe between 20-60 per minute and she is consistently over 60. In order to start feeding her a bottle, they need to come down.

Her feedings are....mediocre. She still has residuals most of the time, but they are pushing to get her back to full feeds so they can stop monkeying around with the IV. She blows through them often. I will be happy once she is off IV nutrition, because I think (in my non-educated opinion, of course) that it could be why she is retaining fluid. PLUS, it is super fatty. One of the vials is pure lipids.

An exciting thing that came about because of NEC is that she is now on a human milk fortifier, instead of cow's milk. They basically take donor breast milk, sort it down to the purest elements, then add those to my milk. I have heard it is $200/ounce. With the cow's milk allergy that Bryce had, I am thankful for this change. Just in case.

Prayers:
that NEC would not return
infection would also stay away
feedings would progress smoothly
respiratory rates would come down
CPAP would no longer be needed
hemoglobin would come up

Thank you for praying continually for my little girl. We are thankful you have not given up on us yet!

PS- We hit the 5lb mark on Friday! She was 5 lb, 1 ounce last night. I am pretty sure half of it is in her cheeks.

Empty

It is so much more fun to share the good news.

It really is.

I have always promised transparency, so here it is.

Josh and I have one word for this week: empty.

We are both running on empty.

Being that Friday was the last day before school starts, I wanted to do something fun with Kayden and Bryce. The plan was to go bowling.

My mom was at the hospital, and called mid-afternoon to inform me Tessa was setting off alarm after alarm.

She normally alarms 6-8 times in a 24 hour stretch when off CPAP (zero times when on CPAP), and she had racked up 20 alarms in the stretch of two hours.

This usually is a first sign of illness, so the doctor ordered multiple tests to see what would show up.

Her 2pm blood work looked fantastic, but they wanted it re-run last night at 9 pm. If she was at the onset of an illness, it could take a while to show up in her bloodstream.

The 9 pm blood work did not show anything, either.

While we are praising God for that, something is definitely up. We just cannot figure out what. She acts like she is in pain, but we cannot figure out the source.

Josh and I again stayed overnight to rotate holding and pacifying her. It is well worth it for her comfort, but it makes for a long night. Long day following. Long week.

What we do know:

She is gaining weight at an alarming pace.
Her right nostril is plugged or clogged or semi-blocked. Still haven't figured out why or the cause.
Her hemoglobin is declining.
The only way to rectify that is a transfusion.
The transfusion last time possibly led to NEC.
Which led to no feeding, and an IV inserted for nutrition.
Which often goes bad two to three times a day, leading to more blood loss.
To check in on her levels to see if she is sick, more blood tests are needed.
Which makes her hemoglobin decline....so then they want to transfuse.

It is a vicious cycle, and it seems like we are constantly weighing what is worse. She can't live without intestines (NEC), but she also can't thrive without an appropriate hemoglobin level.

How do you decide?

I have a hard time believing that she could be home in 4-6 weeks. We are not even in the same ballpark.

I was prepared for the one step forward, two steps back.

Not one step forward, go back to the beginning.

With so much energy spent on having a sick child, the rest of our life is falling apart. Every last ounce of time, energy, and money has gone in to just surviving.

Must be time to go, my dog just threw up on the carpet.

Nice.

Anyone want two dogs?

What I am Learning

So, I promised to share what God taught me seven days ago.

When Tessa was diagnosed with NEC, the very first course of treatment is to withhold feedings and rest her bowel.

An IV was started with sugar water, so she would not dehydrate or drop her glucose levels.

This really does nothing for the hunger. She had been up to full feedings, and now she was back to not eating at all.

For the first few hours, her hunger could be suppressed through use of her pacifier.

My mom and I would take turns standing by her isolette, holding that orange plastic substitute in her mouth.

As time wore on, that no longer did it for her.

Her stomach hurt.

She wanted to eat.

Watching her root for food was pitiful, and there was nothing we could do to comfort her.

Hour after hour, my mom and I alternated with the paci.

Only during the second full day of not eating did we wise up and take her out to hold her.

It helped for a while.

But every few minutes, her little chin would start quivering and she would cry out in hunger.

It killed me.

I literally wept over her, because I felt so sorry for her.

It took everything in me not to feed her.

I wanted to so badly, but I knew it was for her own good.

Lifesaving, even.

I don't like pain.

I tend to shy away from it at all costs.

I have not considered it pure joy to go through the struggles as of late.

For whatever reason, God has chosen to make us go through this.

I can't say that I have understood it, or been happy with the suffering.

But this was a good reminder that God is a loving God, and a provisional parent. I am sure Tessa (even if she had the mental capabilities) would not have thought I was withholding food for her own good, because she couldn't see the big picture like I can.

He works all things together for my own good, even if it doesn't seem like it at the time.
I am promised that He will take me through it, and see that I come out better on the other side.

I am resting in that promise tonight.

Katie DeBoer

One of my good friends, Katie DeBoer, has been taking pictures of my kids since Kayden was little.

I love, love, love her style of photography and how she captures the teeniest details.

As a gift to me, she offered to come take some pictures of Tessa.

I am not sure how to accurately relay my excitement.

She snapped picture after picture, and I am thrilled with every last one.

Do you have a favorite?:-)