Titus Matthew Part 2

If you missed Part 1, click here.

Moving on to Part 2 :) It's still choppy. Sorry, not sorry.

This is what they used to transport him to Fargo (in a helicopter). 

Monday- Feb 20, 2017 Day 3 at the NICU
I pumped throughout the night, I think Alec and I have good system down as he helps me set up
& watch the parts. I usually eat snacks (dried mango!) & listen to worship music while I pump. I
start with "Trust in You" by Lauren Daigle. I hear it 5 or more times per day. Definitely my theme
song.

Going to say good morning to Titus soon!

Fb post: "We are extremely humbled by the huge blessing our friends and family have been! It's
been an incredible experience. From housing in Fargo to meals, encouragement, running errands,
flowers grace from bosses, cards, gifts & especially keeping all 3 of us in your prayers... We can't
say THANK YOU enough. God provides ❤ "

Since Titus didn't have much blood at birth, and they can't find where it would have gone,
the Hematologist stopped by and talked to us. He wonders if it might be Blackfin Diamond Anemia
aka Pure RBC Aplasia (Titus' bone marrow doesn't make red blood cells). It's very rare. About 3-4
people in ND have it, and they are ok. It can be treated with steroids. Along the line, Titus will
probably need a bone marrow biopsy to confirm it.

The hardest news so far. Bad afternoon...😔

They want to start a steroid (Hydrocortisone) on him soon. We said we would give them an answer
tomorrow morning. The good window for it to work well is now. If he does have that condition &
needs the steroid, it will be long term (5 years). If it ends up not being that, he can be weaned off.
We won't know until bone marrow. Which might be in a month or so. Steroids can cause short
stature, possibly weight problems, and possibly neurological problems. They use it short term on
premies to mature their lungs... but not 5 YEARSs.

We're gonna get some info on it this evening. I'm gonna ask if the dosage is the same as a premie
but just longer? Afternoon; Depressed. Sick. Balling trying to nap but can't-- too sad! Thankful
for Alec's encouragement ❤

Went to the NICU to get more info on steroids and as we were washing up at the scrub station, our
wonderful nurse, Janda, said the hematologist and NICU doctor talked for awhile and they are
comfortable with waiting and seeing (on steroids) since Titus is improving so well. Alec and I were
kinda leaning toward that. So that's a relief!! 🙏🏼  Praise God! That turned my mood around and I was
ok with eating out with Adam, Kim and Alec.

Ate at Olive Garden. Yum! Thankful for all that Kim is able to do-- run errands and buy things we
need. It's been a hugeee blessing❤

Went back to Titus, pumped (boobs hurts soooo bad... engorgment. so. much. pain. 😳

We said goodnight to him. Alec prays with me over him. ❤ Love you, Titus. Love you, Alec.

Tuesday- Feb 21, 2017 Day 4 at the NICU
I pooped! 😁  finally. big accomplishment 👍🏼💩

FaceTimed my folks, ate breakfast, morning with Titus, pumped. It's a beautiful sunny day!

Coffee break at the hospital cafe. It smells so good every time we pass it. Called insurance to
add T to my plan. Target for food & sports bra (cut holes in it for hand-free pumping👍🏼 works
wonders✨) Ate at the hospital cafeteria. More pumping. Titus got taken of the nitric oxide this
morning at 10am and has been doing well!! He is still on the ventilator/oscillator, but if the next
couple of tests go well we might get him off of that! But not sure when. His nurse today is Mari-Ann.
She's sweet. Obviously.

Alec & Kim loving on T.

Nap this afternoon on the couch because my feet are still swelled up. :( fun c-section side effects.

He's holding his own blood! So it's probably not Pure RBC Aplasia🙏🏼😍  Answered prayer!!

💙💙💙💙💙💙💙💙💙💙💙💙

He was throwing up a little (bile included) so now they're leaning toward a bowel/gastrointestinal
issue. Doing X-rays and something like an upper endoscopy (through the mouth dye and looking for
obstruction/blockage). Test is going on now. Could take a while... depends on how it flows through.
(Drugs are slowing things down.) pray it comes out normal! Otherwise, surgery is most likely
needed. I think Gastro issues are a lot less scary than steroids, bone marrow, developmental
issues.❤

Trusting God. Alec was reading The Book of Titus to Titus today. 😊

Dinner was pizza at the Condo and we went to see Titus, pump and say goodnight.

They were giving him a medication to push the dye through more quickly. He spit it up :( so sad.
They stopped it and will just let it take its time. Janda was his nurse for a couple hours this evening
and will be his nurse in the morning as well.

Wednesday- Feb 22,2017 Day 5 in the NICU

Pumping this much has been hard. I'm tired. But it's worth it. Alec set up a rocker by the bathroom
and it works well. :)

Morning to Titus, coffee with Alec and Kim at the hospital, talked to the financial center about the
medical help application, ate lunch in the cafeteria, back to see Titus, pump. Home for a nap. Alec
and Kim ran errands while I slept. And back to the hospital.

HE IS OFF THE VENTILATOR AND CATHETER IS OUT🙏🏼.



Alec and Kim are driving to Grand Forks and Alec is sleeping up there because he leaves on a
flight to the Twin Cities for job paperwork in the morning. Kim is driving my car back down...
Civic with a car seat(!!) ❤

Thursday- Feb 23, 2017 Day 6 in the NICU

Last night he had a little difficultly breathing so they put a mask on to help him breath.

Also...

HIS ARTERIAL LINE IS OUT OF HIS BELLYBUTTON.

I can hold him today❤😍😭  and I made 45 ml in one pumping last night!! So HAPPY!!

Best. feeling. ever.



So Dr Bellas came around and said they would try doing the dye again and if he throws it up,
they'll take Titus downstairs to get the tube to the small intestines.

The low hemoglobin could've been from the delayed cord clamping and the blood flowed back into
my body. The bile he was throwing up could've possibly be from distress. So *maybe* (keep
praying).

Dr is looking at a week+ still in the NICU.

The dye seems to be going through well!!! Another X-ray at 7pm. 😊

My mom came🙌🏼🙌🏼🙌🏼  Elias and Lilia stayed back at the hotel with Grandpa Wright.

Mom was singing to him and loving on him. :)

My mom loving on T.

Alec made it back to Fargo. We were all exhausted but stayed for quite a awhile.

Friday- Feb 24, 2017 Day 7 in the NICU

Say hi Elias & Lilia!!

Sadly, they couldn't enter the NICU, but they loved watching video we took of T.

Showered, pumped, & ate breakfast downstairs in the hotel. I went by myself
to the hospital. And Alec was there scheduling his students.  It was frustrating at the NICU today,
because it seem like nothing was getting done I was hoping is CPAP would go to a lower number
and that we would find out about G.I. Studies. He hates CPAP mask, and it's really hard to hold him
when it's on😢.

The not-so-fun CPAP mask. :(

In the afternoon, I took a nap. And when I woke up my stitches hurt so bad and I was kind of
nauseous so I took Oxycodone and that finally set, and I felt better.

Alec, my mom and I went to the NICU and poor Titus was still hating his CPAP mask. Alec got to
hold him and we convinced him to do skin in skin. Titus loved it. ❤

I decorated TItus' pod with Bible verses + promises. 



Alec, mom and I ate dinner at Chipotle. Then Alec left from there to go up to Grand Forks... he
works Sat morning 😔  it's good but also sad.

Mom & I came back and...

HE'S OFF THE CPAP!!!!

He's much more comfortable without the CPAP!

He was fighting it sooo hard the nurse practitioner decided to try without it. It's been 1 hr in.
Hopefully it'll still be out when I go back tomorrow morning. 🙏🏼

Also, the GI studies came back, and THEY ARE NORMAL!!! Praise God!

The dye went right though his intestines! No obstructions 💙 so they started feedings. Very slowly..
10ml over 30 min every 3 hrs. I got to hold him for a longgg time tonight and it was wonderful!
Especially since his CPAP thing was off his face/head. He rested so peacefully.
God is so good. On the drive "home", the song "Praise You in the Storm" by casting Crowns was
playing. I started tearing up with joy and thankfulness....
that song was my song when I was told by a doctor in high school I might be infertile.
Thank you, Lord, for this miracle.

Saturday- Feb 25, 2017 Day 8 in the NICU

Pumped around 6:30am after a nice warm shower. I'm very thankful that my milk is coming in
even though it's so painful. I sped to the hospital and ended up getting pulled over and given a
ticket $17. I started crying as I left. Darn emotions. I kinda deserved it because I was going 42 in
a 25 zone. 😒

I was kinda afraid to come see him because I didn't know if Titus would have the CPAP on or not
and I didn't know if his feedings had been stopped because of throwing up...

But I got here and he looked perfect his eyes were open, no CPAP and the feedings were going
well. Praise God!!!!! 🎉❤️ thank you Lord for these blessings. Held him until his next assessment.
Over an hour. ❤️ Best feeling ever. My heart might explode!! I felt butterflies. It was so amazing.



Pumped again. And cuddling with him some more.

Lunch at the hospital with my mom, Grandpa, and the Littles. Home for a nap. Back to the hospital
with my mom. 😬 haha My mom and I ate dinner and came back up to try breast feeding. It was
challenging because he was lazy and would go to sleep. He was still getting fed through a nose
tube. They also took out his belly button vein line 🙌🏼  which happens to go all the way up to his
heart. Crazy!!!

They started him on morphine to help his withdrawals from fentanyl. He was jittery. Poor guy. :(

Sunday- Feb 26, 2017 Day 9 in the NICU

Morphine dosage hasn't changed up or down. So that's good. Praying it can go down tomorrow.

I might have to be here 24 hrs a day to avoid bottles. Pray that I can convince the doctor to not
have them!😒 Tried breast feeding again. It went better, I think, but Titus fell asleep.

Dr came. morphine is at 0.6 and they do these tests of about 25 questions and depending on how
he scores, they increase or decrease the dosage. I guess they go down 0.1 every day or two about
(if they only go down). Then he has to be completely off of it for 48hrs to go home. So we're looking
at another week /: doctor is ok with trying breast feeding (and not doing bottles). I said I could be
here every 3 hrs during the day. And I think he's ok with me not coming in at night 😊

He is wearing clothes now!
I've been able to avoid dinosaurs and football outfits 😜
Alec came back and spent the night. It was nice being able to snuggle with him again. ❤



Monday- Feb 27, 2017 Day 10 in the NICU

Got to the hospital before 8 to try to feed him. He's just not interested. 😔 Lord, I pray that Titus
would get the hang of it. ❤ He spit up all over me😜 and down my shirt.... the nurse isn't too
worried becaue it didn't look like bile.

Speech came around and said he will probably need his tongue cut 👍🏼 and He was latched on for
maybe 15 min this feeding!!! 🎉  the spitting up was a blessing in disguise.

He gets to go down again on the morphine again. ❤🎉 thank you thank you thank you Lord.

Tuesday- Feb 28, 2017 Day 11 in the NICU

He graduated to a crib!!



Not much has happened today besides the feedings at 8am, 11am, 2pm, 5pm & 8pm. My fam is
in St. Cloud. Mom is signing for the house and Alec is up in Grand Forks working so I'm down
here by myself.

His tongue was cut! They came in as I was pumping, had me sign something and then snip. It was
done. He cried for about 5 or 10 seconds and then they gave him to me to try breast-feeding but
he fell asleep. 😂 I think the morphine helped 😅

Wednesday- Mar 1, 2017 Day 12 in the NICU
I didn't write anything down, so I can't remember 😔

Thursday- Mar 2, 2017 Day 13 in the NICU

Tried feeding him in the morning. He does do too well... but during the 5 and 8pm feeds he does
soooo well. Went to Target with my mom, but on the way I got pulled over AGAIN. I promise
I'm not that bad at driving. HA Supposedly it's the law in North Dakota to have a front license
plate. 😒 Thankfully it was just a warning. But that reminds me-- I should pay the ticket from
last week.

The breast feeding was stressing me out so much that I got a migraine. Took a nap for 3 hours
and felt a lot better. I just want him home so we have to just through their hoops of gaining weight,
100% oral feedings and 60ml every 3 hrs. If it means bottles, we need to do bottles.

Happier ending to the day: he breast fed for awhile and then drank a bottle🙌🏼 so exciting! Since he 

spit up during his 2pm feeding, they're only putting 25ml in it per feeding and he has to get the
rest (he's up to 60ml a feeding) through the boob or tube.

Supporting daddy with his airplane outfit. :)

Friday- Mar 3, 2017 Day 14 in the NICU

💙HAPPY DUE DATE, BABY TITUS!💙

Happy day!

THEY STOPPED THE MORPHINE 🙌🏼

He can eat as much as he wants at the bottle or boob🙌🏼

Hip hip hooray! We're making progress❤

If he jumped through all the right hoops at the right time, I think he'll be out by Sunday!!! So happy!

He's doing so well with a bottle!! Haven't needed the tube at all!

Saturday- March 4, 2017 Day 15 in the NICU

I came in early to see that he didn't have the nose tube in!!! 😍



Exciting stuff! And the doctor said, "We'll watch him one more day then we can think about
discharge tomorrow" (Sunday) 😍 I have to bring the carseat in, and he does a carseat stress test.
He has to stays in it for 1.5 hr and gets monitored during that time.

Also, we're not on a schedule! Well, we're on Titus' schedule now for eating!😃🙌🏼
His assessments are only every 8 hrs now (unless there is a big change.) He kinda eats a little on
the boob (~10min) and then drinks a 2 oz bottle. He's a champ!💪🏼

CANNOT WAIT TO BE HOME AND BACK WITH ALEC🎉❤

Sunday- Mar 5, 2017 Day 16 in the NICU

Praying they discharge us today!!!

The doctor examined him and with a joking voice said Titus needed to stay another week. Haha
Noooo.
Kinda funny but... PLEASE LET US GO! :)

We were discharged an hour or so later ♥️ 

perfect & peaceful
his love for being held started at a young age and continues to this day.

We felted so blessed and know God was holding us in Him arms every step of the way.
He provided a house to stay at.
He provided meals.
He provided Alec with some time off.
He provided a way to let Kim stay in ND until my mom got here.
He provided loving and caring NICU nurses.
He provided mother's intuition so I would go to the hospital.
He provided health & healing for Titus.
He provided encouragement from friends.


We know there is still hurt and pain in our world, but it wasn't how God intended. One day peace
and perfection will reign again when Jesus comes back. We look forward to that day!