No Big Change

Luke is up to 4 lbs 5 oz with no big news to report. The nurse practitioner spent a little time with us tonight & she said that in her experience she has found that little boys don't coordinate the suck, swallow, breathe skills until 37 weeks at the earliest. Luke will be 35 weeks Monday so we anticipate we'll be there at least 3 more weeks.

This has become the ultimate test of patience and endurance.

Good and merciful Lord please give us the strength!

Pity Pot

I have been on my pity pot for a couple of days…

I love the nurses and staff of the NICU but I’m sick & tired of that place!!

Aside from the NG tube and enormous piece of tape stuck across Luke’s little face he looks soooo good…tiny but good. I want to take him home so bad…there’s a door right beside his bassinet and I just want to slip out of there with him hidden under my gown. I know how to keep him warm & I’ve gotten really good at operating his feeding pump so I think we could manage at home. Luke’s nurse, Faye, said to get rid of the blues I should go to Wal-Mart and buy something… I went to Target but it didn’t help! Maybe my Grandma’s chicken and dressing will cheer me up. I have so much to be thankful for…

I looked back at the blog posted last Thanksgiving and noticed all the things I was thankful for (faith, freedom, family, friends, food, my health, my husband and my job, our marriage, our daughter, our house, stillness...quiet...rest...peace) were all BIG things. Of course I am still thankful for all these wonderful blessings however this year I am much more in tune to the LITTLE things. ..

Pop-tarts take 12 seconds in the toaster and a warm pop-tart can make Addy stop crying
The way Jeff tells stories always makes me laugh
Pressing a button on the fireplace gives me an instant fire
Take-out
A baseball cap is a quick fix when you don’t have the energy to brush your hair
My new Bible…No matter how I’m feeling or what’s on my mind I can flip to the back of the Bible where it says concordance and find the verse I need

For me today is about remembering all the little things that make life BIG!

“Give thanks to the the Lord, for he is good; his love endures forever.” Psalm 118:1

Hey guys it is me again. Bec is having one of those days. Poor thing has been going to the hospital 3 times a day for hours at a time. She definately gets mom of the year award from me.

Luke now is 4 lbs. 1 oz. The nurse tonight explained to us that she spoke with the Nurse Practictioner about mixing some cereal in Luke's bottle to help him with his choking. They are hoping the thicker formula will do better. He really looked good tonight though. He had his eyes open for most of the visit. We try to get there for 8 and stay until around 9 or so.

I find it so humbling to know so many people are reading our blog to keep up with Luke and his progress. I get calls all day from family, friends, and clients, and we again want to say how much we appreciate it.

We want to wish everyone a Happy Thanksgiving. I may try and sneak a turkey leg or some of mom's sweet potato casserole in for Luke to munch on tomorrow. That should put some weight on!

3 Steps Forward...

2 steps back. Luke's weight was down to 4 lbs today. We didn't have any luck with the bottle or breast feeding. He was more awake & alert though compared to Monday! Tomorrow is a new day...

"I waited patiently for the Lord; he turned to me and heard my cry." Psalm 40:1

Dakota's Sunrise Star on the Water

"Sunnie" is making herself right at home. She is eating well, chewing well and well...chewing well. Jeff has decided the hallway is the perfect place to start her retriever training. Thankfully I convinced him that the dead-duck wing was best to stay outside...and thankfully Sunnie lives outside and only comes in for SHORT visits.

Week 4

Luke was diagnosed with stage I ROP which means he has mildly abnormal blood vessel growth in his eyes. The doctor explained that most children who have stage I improve with no treatment and eventually develop normal vision. Luke’s eyes will be examined again in 2 weeks to assess whether the blood vessels are continuing to extend out into the periphery of the retina. Of course we hang on every word the staff and doctors say so today after the eye exam I was encouraged by the opthalmologist who reported, “He’ll do fine, he’ll do fine. I’ll see him in 2 weeks but he’ll do fine.”

Luke’s weight today was 4 lbs 3 oz. They have decided to try rice cereal again due to his frequent episodes of reflux. He is also not tolerating the bottle as well as he did on the first couple of trials…he gags and chokes during the bottle trials now. This is very typical of a baby Luke’s gestational age so we are trying not to be discouraged…we’re very optimistic that he’ll master the suck, swallow, breathe pattern as time marches on. As he grows and matures we also know the reflux will improve as well. In time, in time!

“Do not be afraid, for I am with you.” Isaiah 43:5

The Family Continues to Grow

Jeff’s dad surprised him with a new puppy Saturday. He found a beautiful, female, chocolate lab from the same kennel where Milli was born. Quincy, Jeff’s friend and dog trainer, went with Mr. Pat to make sure they got the pick of the litter. She still doesn’t have a name but Addy affectionately calls her “Little Mutt”. Jeff has been studying the pedigree to find a name that fits. Hopefully she’ll be ready for next hunting season.

Luke is up to 4 lbs!!! He is taking the bottle twice a day and now has an NG (nasogastric) tube instead of the OG (orogastric) tube. This will allow for better development of his suck and swallow without the interference of the tube across his lip and in his mouth. It was wonderful to finally get to see his little chin when the OG tube and tape were removed. He will be having an eye exam tomorrow to rule out retinopathy of prematurity (ROP). ROP is a potentially blinding eye disorder that primarily affects premature infants. We are comforted to learn that not all babies who are premature develop ROP. Luke’s birth weight was higher than the weight that is considered to be a risk factor and he did not require prolonged or high levels of oxygen which are also risk factors. We should have the results of this test by tomorrow afternoon.

“Be still, and know that I am God.” Psalm 46:10

How a 3-year old shows her love

Jeff was home sick today with a bad migraine. When we got home this afternoon Addy took off to find her Da-Da and was sad to see that he was still in bed feeling bad. Sweet Addy wanted to help Dad feel better sooo...all by herself she lovingly picked out 4 Tootsie Rolls from her treat bag and carefully placed them on the clock by Jeff's side of the bed. If we would have had a hidden camera I think this could have made a Hallmark commerical.

As for our other sweet, little angel...Luke was up to 3 lbs 13 oz today. He took about 25 mL from the bottle this morning and made an attempt at breast feeding this afternoon. Whew ~ he is a busy boy these days. He is laying on the charm with his nurses and they spend time holding him when we're not there. I'm convinced these people in blue are really angels in disguise...they just hide their wings under their scrubs.

Big Day

Today was a big day. Luke graduated from his temperature controlled isolette into an open bassinet. He maintained his temperature well last night and the entire day today. We don't have to wear gloves anymore when we touch or hold him...it is amazing to finally get to feel his baby, soft skin without the barrier of that glove. Dr. Nijar wrote an order for Luke to be introduced to the bottle once per shift...this is called "nippling". We were there tonight for his first try at nippling & he made us proud! He took 5 mL over the course of about 10 minutes. We felt like this was a great start and the nurses agreed!! The goal will be for him to eventually take 30 mL in 30 minutes. He demonstrated a good suck, swallow, breathe pattern without a decrease in oxygen saturation and no choking or gagging. As a speech therapist in the hospital setting I deal a lot with swallowing...a month ago when I was working on swallowing with my geriatric patients I never imagined I would have to help my baby learn this skill.

Give me 5 Dad that was hard work!

Holding His Son

In the moments of pure chaos after delivering Luke, as he was being taken away by the NICU staff, I remember saying to my mom, "Jeff is such a perfect husband and father I just want him to have a perfect son." Seeing him hold Luke tonight for the first time could not have been more perfect! Jeff is such a natural and he has the most loving and gentle nature. That smile says it all...Here is my son, here is our son.

Not to us, O Lord, not to us but to your name be the glory, because of your love and faithfulness. Psalm 115: 1

New Order

"Wean from heat"... This translates to ~ You can dress your baby!!!!!

Yippee!! They are trying to move Luke from his isolette to a regular bassinet. The trick is that he must be able to maintain his body temperature...with the help of clothes, a hat and blankets of course. His nurse said it usually takes 2-3 days. The nurse dressed him in a long-sleeved onsie then she let me put on his little hat and wrap him tight in a blanket. Once he was all swaddled he was about the size of a loaf of bread.

During Kangaroo Care today my mind was flooded with so many questions.
I held Luke close to me and just wondered...
I wonder if he knows its his mommy holding him right now?
Can he see me looking back at him through teary eyes?
Does he smell me? Do I smell different than his nurses?
I wonder if he hears me singing to him? Will he sing with me one day?
Does he feel me kissing the top of his little head?
I wonder if he will like sports and hunting? Will he be able to play catch with Jeff? Will he love books like Addy?
Will he chase his sister around one day?

Today my prayer is simple: Loving God please give me peace and increase my faith in You.

Grow Little Squirt

Today Dr. Nijar ordered a change in Luke’s feeding regimen. He will be alternating breast milk with formula due to Luke’s slow weight gain. He expects Luke to gain ½ oz to 1 oz a day… He explained that there are approximately 30 grams in 1 ounce and Luke has gained an average of only 11 grams over the past 7 days. With the formula they will be able to calculate the exact number of fats and proteins he is receiving versus the breast milk which they can not determine the exact composition of. I told them I could start eating donuts and Big Macs if that would help fatten up my milk but they said it would not make a difference…except on MY scale. His average weight gain will be recalculated after the next 7 days and if there is an improvement we are told he could possibly return to strictly breast milk.

Come on little man…You beat that nasty infection now let’s grow big & strong!!

The Many Faces of Addy

I will praise you, O Lord, with all my heart; I will tell of all your wonders. Psalm 9:1

We are so thankful that the spinal tap came back ALL CLEAR! The antibiotic was discontinued & Luke’s PICC line was removed this afternoon. What a blessing! All of his little extremities are free of invasive lines. I am hopeful that since the PICC line is out Dr. Nijar will increase our Kangaroo Care to twice a day.

RALLY TIME!!! OK TEAM…with all the major medical issues resolved we need to focus on weight gain!!

Our prayers of thanksgiving are offered up for Luke’s incredible progress and we continue to ask for his healing and growth. It has been such a struggle these past few weeks (especially as the adrenaline wears off) but we feel such a presence of God...we know He is here. We know He is with Luke. We know He is guiding the staff of the NICU. We know we will continue to call on Him but in Him we find peace and strength.

Patiently waiting

Luke's spinal tap was done today after lunch & we have not gotten the results yet. The blood culture will take about 48 hours & the other lab values (proteins, glucose, etc) that tell how well Luke responded to the antibiotic will be a minimum of 12 hours. We probably won't know anything until our visit tonight. He is doing well "clinically". He weighs 3 lbs 10 oz and is up to 1 oz on his feedings. They stopped giving the rice cereal & Dr. Nijar's explanation was because he "doesn't like it"...does that mean Luke "doesn't like it" or Dr. Nijar "doesn't like it"??? Luke is having occasional episodes of reflux and we know this is due to his premature and weak lower esophageal sphincter muscle that just can't hold all that good milk in his stomach. We are told this will improve as he matures. We're still doing Kangaroo Care once a day however yesterday our skin-to-skin time got cut short by an episode of reflux that looked more like projectile vomit to me...Jeff was sure Luke had lost at least 6 oz after that.

We went to the camp Saturday night for a little get-away. Addy loves looking for turtles in the river and riding the golf cart to the pasture to ring the cow bell at the cows. She had such fun with Jeff at the deer lease kicking corn around the food plots. Jeff told her on the way home that she would have to teach baby Luke everything about the camp. Addy responded with much enthusiasm - "Yeah when he climbs on the counter I'll tell him - GET DOWN!" I think she's heard that somewhere before...Hmmm?

Deep Thoughts by Dad

Well this is my first time ever typing on the blog. I am sure most of you saw I was taking over tonight and decided to wait until tomorrow to see what Bec writes........don't blame you. Tonight, the family went to see lil man. He looked good, his nurse was a new one we haven't met yet, but she thought he was doing just fine. He was busy eating, and might I say......keeping it all down. The last couple of days he has been battling a little reflux, so they have tried a few different methods and speeds to keep him from spitting up. He weighed 3lbs. 10 oz. Hopefully he will continue to put on an ounce a day.

His color looked good today and his eyes were open for just a second tonight. We are praying for a clear test Sunday. That is when they will do the next Meningitis spinal tap. Hopefully if it is clear, and the doctors feel his weight is good on breast milk alone, they may take his PICC line out.

Bec has been soooo strong, but I know it is getting really hard for her to go up there and not be able to take our son home. She can only hold him once a day for the Kangaroo Care, other than that, you have to still put your hands through the isolette. It is so hard to explain the feeling of coming home looking in his nursery and not having him in there. We know he is where he needs to be, but it is still hard.

Both Bec and I feel like he has been in there for months already. It is hard to think we may not get to bring him home until January, but as long as he is healthy, we will manage.

We have received so many calls and e-mails from friends and family, we have found our strength through you. For the people that have brought by food or kept Addy at night while we went to the hospital, we can't thank you enough. The overwhelming support and prayers have been so humbling to both of us. We hope all of you understand how much it means to us and Luke that so many people are praying and keeping us in their thoughts. We are so grateful to be blessed with so many great friends and the best family. From the bottom of our hearts we say thanks.

OK tune in tomorrow for the real author of this book. Thanks again for all your prayers.

Outgrown!

Luke's blood pressure cuff (which I have to mention is the size of a large band-aid) was taped to the side of his isolette with a sign that read "I outgrew my blood pressure cuff today - November 13th, 2008". YIPPEEEEE we outgrew something!!!!! We had more Kangaroo Care today...LOVE IT, LOVE IT, LOVE IT. Luke is now getting 1/4 teaspoon of rice cereal added to his feedings every 3 hours due to reflux. This will surely help him pack on the pounds. His repeat spinal tap will be done Sunday. If we get an all clear on the infection we expect the PICC line to be removed. We're on our way to say good night.

Day 15

Every 14 days the babies in the NICU are moved into new isolettes. Luke has been promoted and has made his way closer to the window. Now big sister can get a good look at him. Addy's t-shirt this morning said Big Sisters Rock! I feel sure she's just as anxious for baby Luke to come home as we are.

One Happy Kangaroo

YOU'VE COME A LONG WAY BABY !!!

I got to spend an hour & a half with Luke in Kangaroo Care today!!! Kangaroo Care basically consists of placing Luke in an upright position against my bare chest - tummy to tummy. His head was turned so that his ear was above my heart. Studies have shown that babies are warmer and calmer, breathe better and have a more stable heart rate with skin to skin contact…not to mention the intimate bonding time it provides parents and baby. Luke was comfy, cozy with stable temperature the entire time. The nurses insure that this will also help Luke in his transition from tube feeding to breast feeding. I couldn't stop kissing the top of his little head and drinking in that sweet baby smell.

Taste and see that the Lord is good. Oh, the joys of those who trust in him! Psalm 34:8

2 Weeks Old

Luke is doing well today. He continues to have brief periods of apnea however they are very few and far between. The dosage of caffeine has been increased due to his increase in weight...He is up to 3 lbs 8 oz! He has 4 more days of antibiotic and will likely have the PICC line removed once that is completed. Dr. Nijar says he plans to repeat the spinal tap once the antibiotics are completed so hopefully that will be by the end of this week. When we visit Luke is usually sleeping soundly on his belly. Sleep means growth so we try not to disturb him too much but its hard to resist his sweet, little tootsies and fuzzy, warm back. Our touch-time is limited but we'll take it for now.

My favorite form of worship is through song and I thoroughly enjoy pretending that I can sing when I'm in my car by myself. Jeff got me the Casting Crowns CD for my birthday & track #2 (Praise You In This Storm) is my new favorite tune that I belt out on the way to & from the hospital. The introduction to this song says, "Sometimes God calms our storms. Sometimes He chooses to ride them with us." We believe He is there and doesn't mind if I pray off key.

3 Minutes of Pure Bliss

I HELD LUKE TODAY!!! His nurse raised the top off of his isolette so she could change his linens. She said, “Why don’t you lift Luke up for me (wink, wink) so I can get these clean sheets straightened out?” I picked him up and pulled him close feeling his warm little soul right through my shirt. He nestled right in and it was the best, most wonderful 3 minutes I’ve had in 2 weeks!!!

Sweet Baby Boy

We love you Luke Patrick Leaumont and can not wait to cover you with kisses!!!

Word is that we may get to hold Luke next week. Dr. Nijar is slow to take this step (or leap) because Luke is doing so well...he says he doesn't want to "disrupt" anything. We'll be patient until he feels the time is right. The isolette is warm and cozy but there's no better lovin' than in mommy's arms. I can reach all the way into this little oven...up to my shoulders and my knees fit nicely underneath when I'm sitting in a chair. I think if there was just a little bit more room I might just climb all the way in.

Big Favor

Is anyone traveling to Shreveport by way of Alexandria? We ordered Luke's crib from a store there. We picked it up several weeks ago & assembled it but Jeff noticed a big dent on the front rail & a crack on the bottom rail so we had to order a new piece. It was supposed to be delivered to our house but was delivered to the store instead. Is anyone headed up that way that's interested in making a stop at Baby World on Line Ave?

Less Stuff

When Jeff & I got to the NICU this afternoon we noticed Luke looked a little different. Not only had he scooted himself out of the little sheepskin nest to the bottom of the isolette (Jeff says he was lookin for an escape) but the 2 Velcro hearts that were on both of his little temples to hold on the eye mask were gone!!!! HALLELUJA...He is starting to look like a normal, little, baby boy. I noticed yesterday that when he would raise his arm the cloth from the splint would stick to the Velcro…then he would be stuck in that position because he wasn’t strong enough to unstick himself (but I guess it gave his arm a good workout tryin’). Also while we were there the nurse removed the IV from his hand. HALLELUJA! Less stuff! They are discontinuing the TPN and will only give fluids & antibiotic through the PICC line. The OG tube remains in place & the feedings continue to be increased & tolerated (another BIG HALLELUJA!!) Luke was alert & looking all around during his feeding. His weight was 3 lbs 6 oz again today.

I was telling a friend that being a good Catholic girl I have a rosary in every color and can name at least 20 saints…I go to Mass on Sundays and I read my bulletin but shamefully I have never been good at reading scripture…in fact I don’t even own a personal Bible. Let me say that this ordeal has lead me to the Bible (Jeff’s Bible) and the sticky notes hanging out of the side of it look like a rainbow now. I have been so comforted by what I have found in the scripture.

For 6 good days and progress and weight gain…“How kind the Lord is! How good he is! So merciful this God of ours!” Psalm 116:5

3 lbs 6 oz

...about the weight of a head of cabbage. The nurse says give or take an ounce to account for the little splints on his arms that keep him from bending the IV lines and slight fluid retention. The cranial ultrasound results were "unchanged". Intraventricular hemorrhage (IVH) is described in four grades (Grade 1 - bleeding occurs just in a small area of the ventricles / Grade 2 - bleeding also occurs inside the ventricles / Grade 3 - ventricles are enlarged by the blood /
Grade 4 - bleeding into the brain tissues around the ventricles). Grades 1 and 2 are most common in premature babies, and often there are no further complications. Luke's IVH was classified as Grade 1 and the doctors do not appear concerned as they feel the blood will eventually be reabsorbed back into the surrounding tissue with no residual deficits. Luke is making "spontaneous" bowel movements and we celebrate every little poopy diaper!!

Tummy Time

During morning rounds today Dr. Nijar commented that Luke is doing "very well" and
"everything looks good". He appears pleased with Luke's progress thus far. No significant developments today. He ordered a slight increase in his feedings and a repeat cranial ultrasound tomorrow to rule out an intraventricular hemorrhage (bleeding from small blood vessels in the brain). There was a very, small questionable area detected on the cranial ultrasound at day 3 and it's routine to repeat this test at day 10. The doctors fully expect to see the questionable area resolved on the exam tomorrow. Luke's nurses have him ready for the game this weekend...they have 2 tiger tails hanging from his monitor and a tiger's eye fleur-de-lis on his isolette. With each good day we feel God's mercy and blessings raining down!!!

They were all terrified when they saw him. But Jesus spoke to them at once. "Its all right," he said. "I am here! Don't be afraid." Then he climbed into the boat, and the wind stopped. They were astonished at what they saw. Mark 6: 50-51

Happy Birthday Princess

Addy & her prince charming in their royal carriage.

Addy celebrated her 3rd birthday over the weekend at a party fit for a QUEEN!!!

New Lines

Luke's umbilical artery catheter was removed yesterday. This is where he received all his medication and supplemental nutrition. It's been replaced by a PICC line (peripherally inserted central catheter) in his arm for TPN and an IV in his foot for the antibiotics. A PICC line is a form of IV access that can be used for a prolonged period of time. Its placed in the arm and advanced through increasingly larger veins, toward the heart. TPN (total parenteral nutrition) is a nutritional formula that contains salts, glucose, amino acids, lipids and added vitamins. My breastmilk is also being fortified for added calories and fat. Luke has nearly reached his birth weight...he is a whopping 3 lbs 1 oz and we are hopeful that this slow, steady growth will continue. Since the umbilical line is out he is spending a little time on his belly. We are told that this position helps with respiration and digestion in preemies. During his 5 o'clock feeding I was amazed at how his little swallow reflex was stimulated once the milk reached his belly. He also sucks some on the pacifier when he is fussy but the whole suck, swallow, breathe phenomenon is still several weeks away...he'll continue the OG feedings until then. Dr. Nijar encouraged us again this morning explaining that since timely antibiotics were given once the infection was identified he does not expect to see any residual damage from the meningitis. Only time will tell but we believe God is good.

Week 1

This past week has felt like an eternity with extreme ups and downs and many sleepless nights. The blog has become a sort of therapy for me…not quite as comforting as feeling Luke push his skinny, little foot against the palm of my hand but it will do for now. The e-mails we have received filled with love, support and prayers make these days bearable. I work in the rehab department at Cabrini which is literally right next to the NICU. I have been at Cabrini for 6 years and for 6 years I have walked past the NICU at the beginning and end of my work day. If ever the windows were open to the unit I would stop and peek in at all the little babies. I felt so sorry for the parents as I watched them look into the isolettes with helpless stares. Having such an easy pregnancy and delivery with Addy never in a million years did I dream we would be those parents on the other side of that glass. Jeff’s strength and Addy’s silly antics keep me pluggin' along…that and the faith that God is right there listening to our cries for help.

Today was uneventful (which is good I suppose). Dr. Nijar, one of Luke’s neonatologist told us that group B strep is the greatest cause of neonatal meningitis and that of all the different bacteria that cause meningitis this is the lesser of the evils. He is very optimistic that the antibiotics will clear the infection and the fact that Luke has been seizure free is a good sign for his long-term prognosis. Luke’s bilirubin remains low and his vital signs are good. His feedings are slowly being increased and he continues to digest and absorb the breastmilk like a champ. During both visits today he was sleeping comfortably with no signs of distress. His 10 teeny little fingernails and toenails are not much bigger than a pinhead. He has black hair that is thick and a bit on the wavy side. I’d like to think he looks like me since Addy is the spitting image of Jeff but I guess we'll just have to wait and see once he plumps up and fills out a little more. I sure wouldn't mind another 6-foot, strappin' man around the house.

Grow baby grow.

Update

Tonight when we visited Luke he was sleeping soundly. He looked so peaceful. The nurses report that his bilirubin level has decreased to a point that he will not require "the light" any longer. He continues with stable vital signs (heart rate, respirations, oxygen saturation, blood pressure and temperature). When we visit we wear gowns and gloves and we're allowed to place our hands into the isolette to take his temperature, provide his feedings through the OG tube and change his diaper. When we're not doing these duties we just place our hands on him and talk to him to let him know we are there. Addy painted him a picture and the nurses taped it to the outside of his little isolette...Addy says that "Luke is at the office." The amount of IV fluid he is receiving has been decreased as his tube feedings have increased to 1/2 oz every 3 hours. We pray that his weight will steadily increase from here on out. My milk is plentiful and this is such a blessing...I know it will really be beneficial in his healing and growth.

God blesses those who realize their need for him. Matthew 5:3

Luke had a spinal tap yesterday that showed he has meningitis (inflammation of the meninges ~ the membrane lining of the brain and spinal cord). Group B streptococcus is the type of infection that was found in my placenta and amniotic fluid and we are told that this is what caused the meningitis. He is receiving 3 different IV antiboitics and this treatment will continue for the next 2 weeks. His bilirubin is elevated so he spends most of his time under the fluorescent lamps and appears content with his little eye mask on. Luke is making remarkable progress and given the circumstances we are very optimistic. He is breathing on his own with stable vital signs and receiving tube feedings every 3 hours with excellent absorption. He is a very active 5 day old baby and we are encouraged by everything the doctors and nurses are telling us. Please continue to pray that God will be with us and Luke...we believe in Him and know that he is a faithful God.