Lord of Peace

Luke had a follow-up appointment at the NICU this afternoon and it was all good news. His weight was up to 5 lbs 13 oz… length and head circumference were up as well. When I came home and recorded it on his growth chart I found he was above the 10th percentile in all areas. His hematocrit was also up and he will not require a blood transfusion. GLORY BE!

These past few days have been filled with feedings & diaper changes with lots of snuggle time & kisses in between. Addy is pretty pumped about her “baby brother” and she is very involved in his care. Friday afternoon when I asked her if she wanted to help me wake Luke up to eat she enthusiastically said, “YES!!!” and disappeared into her room. The next thing I know she’s running toward Luke’s bassinet shaking her purple maracas.

Our Gramps (Douglas Luke Sellers) went to join the angels in heaven this morning. My grandparents have been married 61 years. This kind of love and devotion is hard to find and my heart hurts for my Grandma. I find comfort knowing Gramps will always be close to us watching over his family from above. Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you. 2 Thessalonians 3:16

Home Sweet Home

We were discharged home this afternoon.

Great are the works of the Lord; they are pondered by all who delight in them.

Glorious and majestic are his deeds, and his righteousness endures forever.

He has caused his wonders to be remembered;

the Lord is gracious and compassionate.

Psalm 111 2-4

Could It Be?

Could it really be? Luke is scheduled for discharge tomorrow afternoon. Could this really be happening?

As I walked around the house tonight trying to get things in order I was in a sort of daze...hanging little clothes...putting little diapers next to the changing pad...eating chocolate...packing Luke's diaper bag...washing the car seat...eating more chocolate...sterilizing pacifiers. I am watching Jeff sweep all the pine needles from our Christmas tree into a neat pile.

Could this be?

I feel equally excited and terrified. Jeff reminds me that we have done this before.

Luke hasn't had any episodes of apnea since Monday night and he is taking his feedings well. He has nursed really well today and I am on top of the world. I tried to help Jeff understand by explaining that it would be like having batting practice in the cages 4 times a day for 2 months and never getting a hit in the game...then finally you're up to bat and you hit a grand slam!!! I have hooked up to the pump at least 4 times a day for 2 months and for the first time today Luke nursed well 3 out of 3 tries. GRAND SLAM BABY ~ GRAND SLAM!!!

Thank you...Thank you for all the prayers and words of encouragement along the way. During this season which celebrates The Miraculous Birth we feel like we have witnessed a miracle in the remarkable progress Luke has made since his birth. The Good Lord has heard and answered us. We are still praying for Luke's continued growth and health as his little immune system matures and the smooth transition from his temporary nest in the NICU to his loving family at home...

We're bringing our baby home!

I love the Lord, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live...How can I repay the Lord for all his goodness to me?Psalm 116: 1-2 & 12

"Tentative"

Luke's "tentative" discharge date is Friday.

He was weaned from the ventilator and extubated last night without any trouble and his IV's and NG tube were taken out this morning. It was such a relief to see all this discontinued AGAIN!!! He is also back to his full feedings by the bottle. He had 3 episodes of apnea in 45 minutes last night but we are told this is due to the anesthesia and as the medication wears off we should see the apnea resolve. He was much, much more alert with the 11 a.m. feeding than the 8 a.m. feeding so hopefully those drugs are getting out of his little system. All the incisions look good and he is having little to no pain.

I'll believe we are discharged when we strap him into his car seat and see Cabrini Hospital in the rear view mirror!

Angel Face

Week 8

Trust in the Lord with all your heart

and lean not on your own understanding;

in all your ways acknowledge him,

and he will make your paths straight.

Proverbs 3:5

Luke's surgery went well this morning...praise God! The procedure took about an hour and a half. Both inguinal hernias and the umbilical hernia were repaired and he was circumcised. He was taken back to the NICU for recovery. As we were leaving, Nurse Faye was giving the medication to reverse the paralytic. We hope they will start weaning him from the ventilator as soon as the sedative begins to wear off. Here are a few pictures of him without any tubes or tape across his sweet, little face.

My very favorite one! Kisses mommy kisses...

No Apnea for 3 Days!!!

Luke's surgery is scheduled for 7 a.m. tomorrow morning. We have the utmost faith and trust in Dr. Watkins the surgeon. He explained that he'll do things in order of importance in the event Luke doesn't tolerate the anesthesia well...left inguinal hernia repair, explore the right side and repair it if needed, umbilical hernia repair, then circumcision. We absolutely dread seeing Luke back on the ventilator with IV's and an NG tube again. We had hoped that was forever behind him! Also the anesthesia will paralyze his little body temporarily so we were warned that seeing him this way may be tough. We are told that he should be weaned from the ventilator in about 2 hours following the procedure and as soon as his bowel sounds return to normal they'll offer the bottle. After his 8 o'clock feeding tonight he won't have the chance to nurse again until Tuesday. It is so frustrating that we have worked our hearts out at nursing and he won't get the opportunity at all tomorrow.

We are praying all goes well.

For he will command his angels concerning you to guard you in all your ways. Psalm 91:11

Slight Setback

Guess who????? I wanted to start this blog off today by saying how much we appreciate our family and friends during this challenging time.

We hate the fact that we can't spend more time with Addy like a normal family. We are both at the hospital so much we feel we are neglecting Addy. I can't tell you how many times we have called our parents or friends of ours to ask them to either pick Addy up or watch her for an hour in the evening. Not once have we had someone say they couldn't. It truly means so much to know Addy is taken care of by such loving people. Thank ya'll

Well today Rebecca and I felt like we were succor punched by Mike Tyson. During rounds this morning, the Dr. noticed a bulge around Luke's "secret"...that's what Addy calls it. Rebecca got a call from his nurse saying Luke has an inguinal hernia and will have to have surgery as soon as the Dr. can do it.

We are both trying to figure out how much they can throw at lil man. It seems like just when he makes a turn for the better, or accomplishes what they wanted him too, something happens. The Dr. wants to do the surgery first thing Monday morning. He says he sees this in about 1-3 kids. It is called inguinal, and umbilical hernias. We asked the Dr. if he didn't mind just circumcising him while he is under anesthesia. So the Dr. calls it the blue plate special. 2 hernias and a circumcision.

Bec and I have had our strength and faith tested so much these past two months. Today I received an e-mail from a friend of mine in New Orleans. He sent me the poem "Footprints". I am sure most, if not all, of us have read it but it took on a whole new meaning for me today when I read it.

To make matters just a little more light, I was rear ended today leaving the hospital. It was like throwing salt on a wound. I got out and realized the young man hit my trailer hitch and not my bumper......I was still feeling the effects from Luke's diagnosis I just told him not to worry about it and have a good day. You would think I would get a thanks or I am sorry for that.......nope, all I got was an "alright". Nice huh?

So now we are picking ourselves up and holding up our four fingers......we feel like it is the fourth quarter of an LSU, Florida game. We are both mentally and physically drained, but we know this will all end soon.

Please dig down with us and pray hard for a little while longer.

Not Yet

Why am I surprised that yesterday's "yippee" is followed today by an "UGH!!"?

Luke is still having apnea & periodic breathing episodes that they feel are directly related to his reflux. Dr. Castor wants to watch him a couple of more days before she lets him go. She said possibly Saturday or Sunday if the next few days are OK.

Following Jeff's motto of "glass half full" this does give us more time to get Addy prepared and tie up a few loose ends around the house.

John 15:7

"If you remain in me and my words remain in you,

ask whatever you wish, and it will be given you."

All within an hours time we got word that Luke passed his hearing screening, had his NG tube removed and MAY come home tomorrow....If he has no apnea, takes all his feedings well and passes his carseat challenge we will be discharged tomorrow.

The tears flow when I try to thank his nurses. How do you thank the people who have lovingly cared for and nurtured your tiny baby when you could not be there? "Thank you" just doesn't seem to do it.

We know Luke's miraculous progress has only come through the steadfast prayers of our faithful family and friends. We ask that you please add Ava Dore' to your daily prayers. Ava is a friend of Addy's that was diagnosed with leukemia this week and is receiving treatment at St. Jude's. Please pray for Ava's healing and the peace of Christ for her parents and sister.

We have witnessed the remarkable power of prayer and thank everyone who has offered prayers for Luke and our family over these past 7 weeks.

Blessings

As we were saying prayers last night I asked Addy if she had any blessings today. She said "Yeah, the big moon!" I said, "Oh, yeah that was a big blessing. Did you have any more?" She crinkled her nose and made a funny face and said without hesitation, "I had a stinky blessing." I was curious so of course I asked, "A stinky blessing? What is a stinky blessing?" She said, "Reese" (our 14 year old dachshund).

That Moment

Throughout my pregnancy I often wondered what that moment would be like when Addy met her new baby brother or sister. I anticipated that moment with an excitement that's difficult to describe!! Addy spent 7 long months bonding with my belly, patiently waiting to meet this new baby. We had our moment tonight.

That Moment
no glass
no gloves
just us
just us
our family
our souls in 1 place together
so close

little hands touching a little head
little kisses, gentle kisses
he's here, he's here, right here, my brother
my baby brother
can I hold him?

that moment
right then I was full, I was complete

God, thank you for that one single moment in time
we were complete
we were all there so close together for that moment
God, You were there
God, You are always there

Praise God!

Our sweet baby boy weighed 5 lbs today.

Goodbye cantaloupe.

We're shooting for watermelon status!

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not harm you. Plans to give you hope and a future." Jeremiah 29:11

Cuter Than a Cantaloupe

hello

6 weeks & 1 day

Luke had his weekly measurements today.

Weight: 4 lbs 13.3 oz

About the size of an average cantaloupe
Length: 17.32 inches & Head Circumference: 12.2 inches

He is up in all areas from last week! This puts him right at the 10th percentile for his gestational age (36 weeks).

Feeding, weight gain & reflux continue to be his biggest challenges. Most recently we added gas to that list.

Challenges make us stronger right? I pray Luke will be a strong little boy.

Gassy

Luke was up to 4 lbs 14 oz today. They tell us he's "gassy" ... his parrain will be proud. He'll be started on mylicon. He will also start trying the bottle every other feeding and nuzzling twice a day.

Questions

In the delivery room
What can you give her for pain? Our baby is going where? Why is this happening?

Post-delivery
How is Jeff gonna sleep on that? When can I go home? Why is this happening?

Once home
Why is this happening? How can my pregnancy be over? When can I hold him? Luke has what? What are the long-term effects of meningitis? How long will he be in the hospital? How will Addy handle all this? What is his weight..any spit-ups...any apnea?

Last week
When will he be able to nurse consistently? Will he ever take all his feedings by mouth?

Today
HOW in the world will I go back to work tomorrow? How will I see patients and do my documentation and pump and be there for Luke's bottle feedings and nuzzle times? Can I wear a baseball cap to work? How will I spend time with Addy and pump and feed my hungry husband? How will I get all the mountains of laudry and dishes done?

Oh yeah...I have to have good rest and eat right to keep my milk supply up.

Exercise to combat depression...RIGHT! I'm really not on my pity pot anymore. I'm laughing out loud right now. This will be funny!

One thing I absolutely love about my job is that I spend most of my time talking with the old and wise. There is an activity we do to help stimulate memory and bring about conversation. While looking at old, black and white pictures from the 1930's, 40's & 50's patients have told me, "Yeah that looks like our old stove" (and it would be a wood burning stove) or "Look at that ice box" (before the modern fridge/freezer combo) or "Baby, don't you know how to cook without a microwave? Poor child". I've had more than one patient tell me, " No I never learned how to drive" or even better "We never had a car" or "I have 7 children" or "I worked 2 jobs raisin' my family" or "I lost my son in a car accident". I feel sure God will bring me patients this week that can teach me a thing or two about how to get through tough times.

Hello Bible. Let's see what you have to say about "questions"...

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

...exhale...

Roller Coaster

People who have been through the whole NICU experience have described it as a roller coaster ride. Well...we now fully understand as we are strapped in and on that ride!

Last night Luke had his worst feeding yet (that we have witnessed) taking less than 10 mL during his bottle feeding and turning several shades of blue during his tube feeding. This morning when I arrived for his nuzzling (breast feeding) time I found a very, very sleepy Luke that could not be disturbed for anything!

No change in weight today.

Tomorrow is a new day.

A baby one day older, one day wiser.

"Therefore I tell you, do not worry about your life." Matthew 6:25

4 lbs 11 oz

If it wasn’t so cold outside I think I would stand on my roof & SHOUT right now!! YEEEESSSSSSSS!

Luke did his best thus far at the breast this morning!!! No details…but this happy kangaroo has become a very, very happy & excited cow!!! I realize he will have good days and bad days but today is a GREAT day!

My dear friend Heather in Texas explained it this way … (Does anyone ever win a race the first time they get out there and run? or even the second time? NO, it's always those who have been training forever. Luke is running that race...he's needing every little bit of practice he can get to make it to the finish line...some days are more productive than others and some days he almost gets the gold medal but comes in with a silver. There will be a day really soon where all of this practice and training will pay off and he will eat those 2 bottles with ease. Continue to cheer him on as he is training and know that he has the strength and will of you and Jeff combined and will get there soon and that medal will be his! GO LUKE GO!! RUN BABY RUN! But they that WAIT upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall RUN, and not be weary; and they shall walk and not faint."Isaiah 40:31)

During rounds this morning every word out of Dr. Nijar was positive…"He is very strong, he is very active. He is doing very well.” He discontinued alternating formula and breast milk since Luke’s weight gain has improved & resumed the breast milk (via NG tube and bottle) every feeding now. Dr. Nijar sure knows how to make a mommy smile!

It is only through prayer, God’s grace and friends and family that we are getting through this tough time. As I stand on my roof I can hear everyone cheering and celebrating right along with us.

Progress

Luke has had 2 days of no apnea (periods where he stopped breathing) or bradycardia (slowed heart rate). This is wonderful since it is part of his ~ gulp~ discharge criteria.
He was 4 lbs 10 oz today. He took his early morning bottle in 16 minutes and took all but 5 mL of his evening bottle. Dr. Nijar discontinued the rice cereal in his bottle trials to see if he can tolerate the thinner consistency without choking.

"Whatever you ask for in prayer believe that you have received it, and it will be yours." Mark 11:24

So Close

Luke was almost 2 for 2 for 2 ~ 2 bottles out of 2 trials for 2 days! The bottle is still only offered once per shift and the other feedings are given via the NG (nasogastric) tube.

Our goal at this moment is to see Luke take his bottle (35 mL in 30 minutes) for both feedings for 2 consecutive days. He was 2 for 2 yesterday then he took the bottle for his nurse this morning so he was on a roll…I held my breath during his 5 p.m. feeding when we were 25 minutes into it and he had 15 mL to go. Come on little man you can do it!!! I could see the nurse looking at the clock out of the corner of my eye but I tried to ignore it. It was obvious Luke was spent though…eyes shut, head back, mouth open, arms hanging loosely by his side….DONE! 1 for 2 today… We’ll try again tomorrow.

Every Tuesdays they measure & chart length, weight & head circumference. His weight & head circumference increased but length remained the same. I asked the doctor if we should be concerned... She just smiled politely & nodded in my direction saying “You know height is genetic.”

Itty-bitty Baby Parts

My step-dad AKA "Bobarazzi" took some wonderful photos of Luke over the weekend. What is it about little noses and toes that is so irresistible? To see how incredibly small yet perfect these little parts are leaves me wondering how anyone could ever question the Divinity of creation.

"So God created man in his own image, in the image of God he created him; male and female he created them." Genesis 1:27

Week 5

During daily rounds this morning Dr. Nijar was pleased with Luke's weight gain over the past 7 days...he is at 4 lbs 6 oz today. He has gained an average of 26 grams (just under 1 oz) per day over this week. Dr. Nijar likes to see an average of 15-30 grams per day so thankfully we're on the upper end of that range. It feels like a snail's pace to us but Dr. Nijar remarked that we don't want Luke to be "fat & lethargic" we want him "lean". He said the "actual physical growth" isn't as important as the "maturation of his systems".

The bottle trials are hit and miss. Luke has such an aggressive suck reflex that he gets to much in his mouth to handle without choking...the cereal-thickened formula clogs the hole in the nipple & he sucks his little heart out & gets nothing. UGH! The breast feeding is also progressing at a snail's pace...another BIG UGH!!! The reel keeps playing in my head...it will come in time, it will come in time, give him time, be patient, give him time, it will come...

Big Sister Addy

Going to the hospital to see baby Luke is OK...There are lots of fun things to do...the long halls are fun for running...

...but I'd rather watch Polar Express & have hot chocolate with cousin Lexie !!