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?:-)

34 Weeks

I want to mention each one personally, but I am sure I would probably forget a few and feel bad.

There is a group of women that send me verses and uplifting scripture, and have for the past few months.

I just opened my inbox to this. It was so beautiful and powerful, I had to share it!

The Lord is good, a refuge when Tessa was in trouble. He cares for those who trust in him. NEC will leave and not come back again. Whatever the evil one plots against the Lord he will bring to an end; NEC will not come a second time. Nahum 1:7-9 Let Tessa say, “I am strong!” Joel 3:10. May Jamie not waiver in her faith. May she hold fast to the confession of our hope without wavering, for He who promised is faithful. Heb 10:23. When Jamie said, “My foot is slipping,” Your love, O Lord, supported her. When her anxiety was great within her, Your consolation brought joy to her soul. You are Jamie & Tessa’s fortress, the rock in whom they take refuge. Ps 94:18-19,22 Oh, blessed be God! He didn’t go off and leave them. He didn’t abandon them defenseless . Ps 124: 6 Jamie and Tessa have escaped like a bird out of the fowler’s snare; Their help is in the name of the Lord, the Maker of heaven and earth. Psalm 124:7-8

Thank you, Heidi!:-)

Tessa, Tessa

My darling Tessa.

The last few days have been rough.

Have you ever tried not eating for two days?

It sucks.

I cannot stand to see her cry and cry, so she has been loved on around the clock lately.

Between Josh, my mom, and I, Tessa has been held the majority of the day.

A small price to pay for her comfort.

In terms of diagnostics, her CRP blood work came back lower yesterday. The X-Rays show a less distended bowel. Praise the Lord, her X-Rays have not show any pneumatosis (bubbling of the lining).

Her blood cultures also came back negative. However, she has officially blown out four IVs in the last two days, so I am hopeful infection STAYS out of her blood. The last thing we need right now is sepsis.



Tessa has about a half of a soda can of blood pumping through her.

Because of NEC, they have to test her blood a lot.

Well, guess what happens when you take a lot of blood?

Her hemoglobin is again falling, and very close to the level she had when they did the transfusion in the first place. As I believe that is what caused this, I am very leery to do it again.

But it is not good for her to be anemic either. It is like trying to figure out which option would be worse for her, since neither is ideal.


Next X-Ray/bloodwork tomorrow to see if it would be safe to resume feeding her. We are looking for rested bowels, and a CRP level of less than 10 (hers currently is 27).


So many of you thoughtful people have offered to help. Josh and I are running on E, and then some. The problem is, I am not even sure what to ask for! :-) I currently lack the organization/mental skills to solve how to make this easier.

Prayer is the one thing that I know works, so today I ask for continued prayers.

Specifically:
- that the NEC would be gone
-Tessa would not develop a blood infection
-comfort for her hunger
-that NEC won't come back once she starts eating again (POSSIBLY Sunday or Monday)
-supernatural energy for Josh and I
-that neither of us would get sick due to lack of sleep
-a peace that passes understanding
-nurses that are vigilant, and keep a close eye on Tessa, so I can feel comfortable leaving her
-Kayden and Bryce. I am so sad that their lives are upside down lately. I hate to say it, but since Tessa was so ill, she got the vast majority of my time. Then I feel guilty about not spending time with the other kids. Vicious cycle, I tell you.
-sleep

Thank you, prayer warriors!

Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Spin Me

My brother Nathan was serving in the army during the summer of 2002, in the early days of the Iraq war.

Day and night I worried about that kid. When reports of dead American soldiers flashed across the television, I would strain to see if it was my dear old red haired crazy brother.

His homecoming was as grand as it could be, and every heart lifted a little bit when he hopped in his black BMW Z3 convertible to hunker down at mom's for a few weeks.

The Hudsonville Fair is a time honored VanderPloeg tradition. Barns full of animals, carnival rides, and sticky cotton candy represented the final hurrah before school started.

Nathan and I decided to go on kid's day that year. A 23 and a 21 year old, riding all the carnival rides amongst the sea of blond haired, freckle face young 'uns.

It was a blast.

The ride pictured above was a favorite growing up, so Nathan talked me into to riding it with him.

We sat down on the metal seats, and I uttered eight words that I would soon regret.

"Please don't spin us. I get terribly sick", was all the carnie needed to hear before clanking the door shut and spinning us Price is Right style.

Over and over and over he spun our cart. We were going so quickly in a circle, my eyes starting losing focus.

I could feel my stomach churning and immediately I was regretting that warm, gooey elephant ear.

On round 20, I was literally screaming for him to stop.

I can still see the mischief on his face as his hand pushed the bar to spin us again and again.

I really think this, as opposed to a roller coaster, more accurately describes our NICU journey.

As time goes on, your so dizzy that you cannot find which way the sky is, and all you want to do is throw up.

Saturday night, I could tell Tessa's breathing sounded funny. Her nose seemed clogged, which is detrimental to these little nose breathers. It is hard enough for her to breathe on her own without one nostril clogged.

She fought and fought all day Sunday to keep her saturation levels up.

Monday, when the doctor rounded, I asked him to put her back on CPAP, since she was retracting pretty consistently.

Her respiratory rates were still pretty good at that point, so she stayed on room air and we listened to the dinging all day as she de-sated.

Monday night rolled around; even Rachael immediately noticed her pale appearance and difficulty breathing.

She drew blood for a CBC, which showed that her hemoglobin was low. The decision was made not to do a blood transfer that night.

Tuesday morning, I went to her bedside early to make sure I caught rounds. Dr. Gelfund came in, and we spent forty minutes talking through all of her issues- the nose being clogged up, my apprehension with NEC associated blood transfusions, if a possible milk allergy was causing the anemia.

A bunch of different tests were run; each one came back normal.

Dr. Gelfund said that Tessa was in need of a transfusion, and it would perk her levels back up so she wasn't so worn out. He suggested to hold her 2 pm feeding, on the off chance that would help keep NEC from occurring.

I guess a good explanation of NEC is probably in order, but I am not exactly an expert on it. NEC is a condition in which the intestines begin to die. The bacteria start attacking the intestinal wall, which can lead to a perforation. There are varying degrees of severity. In the most extreme cases, a baby can be completely fine one day, and die within hours because the entire bowel wall turns to acid.

Premature babies are always at risk for NEC. As she got older, her risks were decreasing with each additional day. Dr. Gelfund knew how against the transfusion I was, and came touting research on babies her size.

At DeVos, they generally only see 2-3 cases per year in babies over 2 lbs, 2 ounces at birth. Very few over 32 weeks. Normally NEC appears in the first two to three weeks of life. Almost always when full feeds are established (she had been on full feeds for weeks).

They also cross checked the number of NEC cases within 48 hours of a blood transfusion. In the past 2 years, only 2 have presented after a blood transfusion.

I told him to go ahead, but warned him that "we would have words" if she contracted NEC.

Night rolled around, and Tessa was a lethargic. Not terribly alarming considering the amount of poking and prodding she endured.

But, mamma knows best, and I just had the feeling that something was off. I called 3 times between the time I left at midnight and 5 am.

Josh arrived at 8 am. She was agitated, but not overly so. She had a 3 ml residual from her last feeding, which sent off a tiny alarm bell for me. Tessa never has residuals anymore.

At two, I went to change her diaper. It was bloody, a tell-tale first sign for NEC.

I asked the nurse if she thought it was bloody.

"I've seen worse", she said.

I asked about her 8 am stool, and she told me that also looked a tad bloody.

"I wouldn't worry about it", she said. "Her stomach looks normal".

She wanted to go ahead and feed her, which I had previously read would make NEC worse.

"Would you mind sending it down to see if it was blood and informing the doctor?" I asked her.

She called Dr. S, the on call neo, who again advised to push the feed.

At this point, I was doing skin to skin with Tessa and she was acting so uncomfortable. She would not relax and kept squirming around and flexing her stomach.

I knew it was her belly.

I told the nurse again that I was really uncomfortable with feeding her. With all that was going on, I wanted to see a neonatologist. Preferrably Dr. Gelfund.

After making me feel stupid, arguing with me that she had already called Dr. S and got his decision, and pointing out that Tessa had no other signs of NEC so it would be fine, she took a sample of the stool.

As I was crying (the ugly cry, mind you), I heard her slam the trash lid down and leave the room.

And didn't come back for an hour and a half.

Now, that is fine if Tessa was in her bed, but she was laying on my chest. It is really difficult to navigate lifting up the top to her isolette and putting her back in there safely with all the cords and wires attached to her. The two CPAP tubes are really heavy, so if they hang unassisted, they pull on her little nose back and she screams in pain. I almost never do it by myself because there is so much to work with to get her put back correctly.

After fifteen minutes of finagling cords and wires, I finally swaddled her back up in her blanket. I was leaning over her, trying to comfort her, and whispering "I love you" as Dr. Gelfund came in.

He took one look at her stool and told the nurse to discontinue feeding her until we got more bloodwork and an X Ray.

The X Ray came back normal fairly quickly, but it took about an hour to get the bloodwork back, confirming that she had elevated CRP. He bumped her from suspected NEC to probable NEC.

It would take 24 hours to know what the disease was going to do and how aggressive it would be.

Josh and I watched the clock as night dragged on. My parents came up to sit with us. Our pastor came in and prayed over her.

Another X Ray was taken at 11 pm, which did not show progression of the disease. The 6 am X Ray showed "gassy bowels" but no bubbling of the lining (thank God!)

We have another XRay and more bloodwork planned for tomorrow morning, which we hope will show NOTHING new.

Tessa, Grandma, and I had a very tough day and night, since she is not allowed to eat for the next 7-10 days as the antibiotic kills the bacteria threatening her bowels.

As for her nurse, vindication came as Dr. Gelfund left the room after we got the official diagnosis.

"You didn't hear it from me, but I am SO glad you did not let them feed her" he said, as the nurse stood by.

Two of Tessa's primary nurses were on yesterday, which was a God thing. Jude takes care of her most of the week, and took over when things got rough yesterday. Tessa wasn't even her patient, but she was sitting along side us holding our hands, reminding us God would take care of Tessa as He had done thus far.

She prays after every shift for an hour at a Catholic church downtown, and as she left she told me "You know where I go after I work, right? I will devote the entire hour for praying for Tessa."

Thankfully, our other favorite nurse came in (many of you know her- Rachael Brinks:-) and helped us stay sane through the night. She had been keeping track of Tessa's downward progression since her shift on Monday night, and helped me through the toughest night yet.

She is so on top of everything. I never feel like she cuts corners or takes her job lightly.

I feel bad because I have complained a lot about the nurses lately. The thing is, her primary nurses have spoiled me. When you have a great nurse, and then get just an okay one....you can tell the difference immediately.

Overall, my biggest disappointment is that I feel like we are back to square one. Tessa cannot eat for 7-10 days, and then her feeds will slowly be reintroduced. We were already on full feeds, I had breastfed her, and felt like we were making progress.

In general, they said having NEC adds on about 2 weeks to her stay.

2 more weeks of cafeteria food.

2 more of non-stop fast food.

Two more weeks of not being together as a family.

Two more weeks of waking in a panic, wondering how she is.

Two more weeks of not feeling like the mom I want to be.

Two more weeks of feeling pulled in every direction.

Two more weeks of driving back and forth.

Two more weeks of missed bedtimes, trampoline jumping, and cuddling in bed.

Two more weeks of not seeing Josh.

We are incredibly (immensely!!!) grateful for the miracle she is, but today I ran out of steam and needed a pity party. We have been here ten weeks already, and two more weeks after October 1st feels like a long time.

Thank you for all the prayers offered on behalf of Tessa. We are praying with everything in us that the infection is minimal and this is just a setback. It could so easily turn into something major.

Please pray for the Great Healer to keep His gaze on our Tessa girl.

5 weeks

Yesterday's 5 week birthday was not as fun as it should have been.

As always, God used it to teach me something.

I will write more on that later, though, as I am heading up to see my sweetie.

I have been asked who she looks like. I think the evidence is pretty clear, huh?

K Dog at one month old.

Whopper....

Fries, and a Drink.....Yikes.

Our peanut is 4 lbs 3 ounces. Gaining like a true VanderPloeg!

Have I mentioned my other boys gained 3-4 lbs their first 10 days of life?

Josh was up tonight with Tessa, so I decided to go Back to School shopping with the boys.

What a trip.

I forgot how tiring it is to oscillate between "Don't touch", "Come back here", "No, we are not going to buy that", and "Stop Whining".

Hope arrived in the form of bunk beds, so tonight has been a tough adjustment overall. Lots of tears shed by Kayden.

Tessa was off CPAP for the past few days, but went back on it tonight. Her nose has sounded stuffy to me yesterday and today.

I do have a specific prayer request tonight. Tessa gets her blood drawn tomorrow night to check for infections, platelet levels, etc. Please pray with me for normal results.

No infections, a good hemoglobin level, etc.

Thank you, as always, for praying for Tessa the Tank :-)

Please also pray for the boys. I often forget what a huge time of adjustment this is for them. To have a sister, but not have her here, is something they are trying to wrap their head around.

Disney

Growing up, we went on vacation every other summer.

Not just any vacation, mind you.

We went to Disney World with my dad's entire family. Grandpa and Grandma Van took care of the bill. Every detail was planned and listed in his scrawling penmanship on our itineraries-breakfast with the characters, dinner at the saloon, the electric parade- even free time was carved out with loving care. As we arrived to the airport, an envelope was handed with money for a souvenir. Disney credit cards were tucked away in wallets, with freedom to purchase the $7 fries or $10 Mickey Mouse ice cream bars. The final year we went, the summer I turned 18, there were almost 40 of us in our matching "Van's Clans" shirts.

One of my earliest memories was counting down the days until we left. As soon as "save the dates" were handed out, I would memorize how much longer until the plane boarded.

It would start in the hundreds, and then slowly the calendar would flip to July.

All year I looked forward to those 7 glorious days in the most magical place on earth.

The first three days would generally go by in a blur of theme parks, monorails, and swimming pools.

As day 5 rolled around, I already started dreading the departure.

There was always a certain sadness when packing the Mickey Mouse ears into the suitcase for the plane ride home.

The enchanted fun is over and real life stretches ahead.

*********************************************

The papers started arriving a few weeks ago. Only they weren't vacation itineraries. Class lists, meeting dates, and reminders of obligations started flooding our mail box.

I set them aside with relative ease.

The dread didn't really hit until today, when I sat down with a calendar. Josh goes back to work next week, and our schedule is going to change drastically.

Gone are the days of him being with Tessa in the morning, with me visiting at night. We have a pretty good routine.

I know it will all work out, but I hate the thought of her being alone half the day. Reality is that neither of us will have the free time we do currently.

Kayden will also be in school full time. This was not the summer I wanted to cherish before relinquishing all his days to school.

In many ways, the summer of 2011 wasn't what I thought it would be when the pregnancy stick turned pink last January.

I imagined sitting by the pool in my new, brown floral pregnancy suit.

Eating watermelon and chips at the beach while watching my belly grow.

Long walks to the park, friends swimming in the pool, smores over the fire with Josh and the boys.....all things I listed on the imaginary itinerary for summer.

We saved up and had grand plans to visit California, so the boys could experience Disney for the first time.

I could say this summer sucked, but that doesn't completely cover it either.

Summer of 2011 ushered in the toughest and longest, most stressful days of my life.

But it also ushered in the happiest.

And looking back, I wouldn't change it if it meant not having her.


“I waited patiently for the Lord to help me,
And he turned to me and heard my cry.
He lifted me out of the pit of despair,
Out of the mud and the mire.
He set my feet on solid ground
And steadied me as I walked along.
He has given me a new song to sing,
A hymn of praise to our God.
Many will see what he has done and be amazed.
They will put their trust in the Lord.”

Psalm 40:1-3

(I stole this from Ann Steenwyk- thanks, Ann!)

Happy One Month!

As it was my night with the boys, Josh suggested that I walk with them to the local park. A splash pad was installed a few weeks ago, and the boys really wanted to try it out.

After putting bathing suits and shoes on, each boy mounted their bike and headed out the door.

As a side note, I think my body turned eighty while spending so many weeks on bedrest. Oh my goodness! I cannot believe how winded I was by the time I got there.

Sometimes I wonder how two kids, raised the exact same, can turn out so differently?

From the get go tonight, Bryce was a maniac.

Kayden hesitantly rode down the hill, looking back to constantly make sure I was following. Always on the side of the road. Always stopping at street crossings.

At one point, Bryce's entire body was horizontal. Feet flying high in the air, rolling as fast as he can go. He prefers the middle of the road, and fell at least five times on the way to the park.

Once they decided it was too cold for the splash pad, we entered the skate ramps area.

Bryce immediately climbed the tallest ramp, and lunged down at full speed.

I had to coax Kayden into taking his bike down the smallest ramp. As I held the back of his bike during the ascent, the tiniest smile came across his face.

I asked him if I could help him go down again, to which he replied a firm no.

The park also has one of those old 15 foot metal slides. You know, the ones that are probably illegal as the only thing preventing him from tumbling off the side is two inches of a lip.

He sat at the top for a few minutes before digging in his sandals to ease slowly down.

I felt the whisper.

I could see myself while Kayden was going down that slide, ever so slowly.

A reminder from God that I might be missing the thrill of this time of life, while constantly being so cautious.

It's so easy to trust God when life is great, isn't it?

It's easy for me to have trust when I am on the reliable Fisher Price plastic slide.

So much more difficult when my child is in the NICU, and things are just plain scary.

I am a work in progress, I suppose.

Yesterday, Josh called to tell me Tessa was off her CPAP for three hours. My mom has been waiting and waiting to hold her, so we rushed up there to catch an hour's worth of cuddles for Grandma.



It was a huge blessing to kiss her head over and over and see all that beautiful blond hair again!



I thought this one was just plain funny.



One Month

28 Days

1440 Minutes

262800 Seconds

However you want to say it, Tessa is one month old today.

16 inches, 3 lbs, 8 ounces.

I am so grateful and thankful to God for this precious gift of time with Tessa. I cannot believe how much I love her. I still cannot believe she is here.

Thank you, as always, for keeping Tessa in your prayers. We are hoping and praying for many more uneventful days ahead!

Big Belly

Yesterday was just one of those days.

Nothing was going right.

When I entered Tessa's room, all of her alarms were going off because her CPAP had fallen off. She had become unswaddled and had somehow scooted down in her isolette, causing her airway to become restricted.

I immediately contacted the nurse to put her CPAP on, and her saturation levels came back up in no time.

The nurse said, "Oh, I am not sure why her alarms did not come to my phone. We have been having problems with them."

I thought, "Well, then check in on her every once in a while, for crying out loud!"

Previously, I mentioned that part of the difficulty with the NICU is that you are trusting others to care for your baby.

There is a certain consistency that I have come to rely on. For example, Tessa is fed 28 ml every three hours. Her belly is checked, her diaper is changed, and the contents of her stomach are pulled back to see if there is anything residual left over in there.

In the last week, there have been a few minor mishaps....which is part of the reason I have become more uneasy being away from her.

For example:
-the CPAP being off for goodness knows how long
-her residuals weren't checked
-temperature probe dinging that she is too hot, and no one even noticing
-feeding at the wrong time
-her bottle being left out for over an hour, wondering if the milk was spoiled
- trying to feed her 60ml (twice her normal amount)

While these are all considered minor, you can see how my mind starts racing. If this is happening when I am there, what in the world is happening when I am not there?

Anyway, back to yesterday.

After the CPAP issue, I noticed Tessa had been paired with a baby in isolation.

I am already sort of a germ freak, so for her to be paired with someone that obviously has an illness requiring isolation put me on edge.

I then had a nurse come in and tell me that another baby died (same room as Reed). I asked if he was sickly, and she said "No, he was born healthy and then died suddenly."

At her eight pm care time, they took a measurement of her belly, and it was up 2cm...one of the first signs of NEC.

I have mentioned NEC before, but wanted to give a brief explanation of why I am so terrified of it.

No one knows what causes it.
It can happen to any baby, but is far more likely in a preemie.
In the most severe case, the baby can be completely fine, have their bowel perforate, and pass away within hours.

The doctor was called to do an examination, and concluded that she looked fine, but they would watch her.

During the night, her belly went up 5 cm. They took an X Ray and so far she is not showing any other signs of NEC.

They think it is because she has air in her belly from the CPAP.

Please pray hard for her to stay healthy. Please pray that this belly business is nothing serious.

I swear I am going to end up in Pine Rest before this is over:-)

32 weeks today!

Remember when I said that Tessa likes to make her own rules?

Most babies love skin to skin. Their respiratory rates go up, their heartbeat comes down. In general, the baby relaxes and does better.

Not my little Tessa girl.

The minute I take her out and place her on my chest, her oxygen saturation levels go crazy. After a while, she settles down....but then forgets to breathe. Twice in the last week they have had to give her oxygen while I was holding her.

As far as breathing, she is still on CPAP. A few days ago, the oxygen saturation limits were raised from 83 to 88 for her size, and she struggles to keep her saturation that high. I was told that eventually, her lungs will be strong enough to maintain without CPAP. Hopefully, that day will come sooner rather than later, as she hates that thing.

Sorry if this is too much information, but she is pooping like a champ. Makes mamma proud:-)

I can tell she is looking older, and she is far more grumpy when she is not getting her way. This, of course, presents new challenges, because it is not like I can pick her up and hold her if she is fussy. Usually just placing my hands on her belly does the trick. Very rarely, she will take a pacifier (which cracks me up as it is almost as big as her head).

Her next thing to master is a bottle. In the next week or so, they will start trying to feed her orally. So far, she has just been eating through a tube to her stomach. I have heard that this is the biggest challenge towards going home. It is hard to breathe, suck, and swallow all at the same time.

Thanks, as always, for praying for her! We are praying that she steers clear of NEC or any other nasty infection, starts taking a bottle well, gets off CPAP, and keeps gaining!

Ramblings

I started MiniMe BabyGear when Kayden was a few months old, with the intention of sewing everything myself.

That worked really well until the Wet Happened? wet bag took off.

I remember sitting downstairs at my mom's house, printing off my largest order yet. Ten bags! I couldn't believe it. I had not received ten orders for the entire month, and then to have them all in one day....my mom babysat Kayden overnight for me to work. Back then the bag was so handmade, it was actually hand sewn.

Summer of 2004 came, and a large blog featured the bags. 124 orders came in before noon. I worked 70 hours a week that summer sewing wet bags. Josh would be outside swimming, I would be in the basement with my winter boots on (our basement is freezing!) assembling bags.

Target came knocking next, with an initial order of 6,000 bags.

I controlled it all. The fabric choices, the packaging, the website, the marketing.

There was something that felt really good about that; watching my business grow. I take no credit for the success, mind you. I always say it was a lot of God, and a little bit of good timing.

Anyway, I was working all the time. From 3-5 pm and then again from 8pm to 3am, I would try to accomplish what I could. I never caught up, and was stressed and sick constantly.

About two years ago, I partnered with Itzy Ritzy, who took over the manufacturing and distribution. They have done a great job and I know the Wet Happened? wet bag is in very capable hands.

Thing is, it was really hard to let go.

That business was my baby.

When you have poured your blood, sweat, and tears into something, it becomes such a huge part of you. I struggled to step back and let someone else take over.

It's a million times harder with Tessa.

I have a baby, but she's not here at home with me.

Strangers care for her.

I have to trust that they are giving her the correct milk.

That they don't mess up the dose.

That they are washing their hands before they care for her.

They will hear her when she cries and comfort her.

They will know if she is too hot or cold.

It has led to what I like to call "NICU Neurosis". The total lack of control can make one crazy.

I do pretty well during the day, but night time is terrible. The only time I actually relax is when one of my favorite nurses is on duty (we love you, Rachael:-)

I realize this is all part of the stress of having a baby in the hospital, but any prayers you would offer up on my behalf would be appreciated.

As always, please pray for Tessa to remain free from any infections. My little porker is up to 3 lbs, 3 ounces, and I would like her to keep growing and gaining!

Thank you for your faithful prayers.

A day of Threes

Early in this pregnancy, I bought a dopplar to listen to Tessa's heartbeat.

April 19th, after we got home from the emergency room, my mom and I were laying in bed.

Both of us were crying.

I remember putting that doppler over my 16 week belly, and telling my mom "This could be the last time I hear her heartbeat, so I want to record it on my phone."

Just remembering the bittersweet shwish-shwish brings tears.

Tears for the months spent on bedrest, wondering what state she would enter this world in.

Tears for the miracle of her birth.

Tears for her third week of life.

Happy 3 weeks old, Tessa.

We are incredibly thankful and grateful for these past three weeks.

Ephesians 3:20 "Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us."