Luke came HOME yesterday!!!

How wonderful it was to wake up this morning to our whole family under one roof. Well, maybe I didn't wake up since I had been up for a while :) Yeah, I didn't sleep much (~2.5hrs) last night with little man trying to figure out a new place and his nights. The lost sleep was worth it though! So glad I am not going to the hospital today!

The coming home story...

Luke had a great Wednesday night in which he ate good, gained weight, and regulated his temp well. Therefore, he got to go home Thursday! We made it home about 1:30pm. I skipped going for his 9am  feed that morning to work on the house a bit more and run some last errands before Luke was to come home. When we got to the hospital, they were waiting on us to discharge! We were shocked as we were expecting to have to wait a while to be discharged. It was awesome!

Alex and David adjusted well and enjoyed Luke (and Mommy) home yesterday. Luke definitely knew he was in a new place and preferred being held or placed in light where all the action was. I think the noisy, bright NICU left it's mark on him. Hopefully, we can train him to like sleeping in the dark. Today, Alex and David had a few meltdowns (1 each before 7:30am!). I think we have some adjusting to do!!!

We are all so thankful to be together under one roof. I felt total relief yesterday afternoon when I looked around and saw everyone at home and realized that I did not have to go to the hospital anymore to visit Luke. Whew! I think the last 4.5 weeks have been a blur. Luke is supposed to be in my belly for another 4-5 weeks. ha! The Lord knew he would exit the womb early. Now, He is helping us learn life with a preemie, a toddler and a preschooler.
 

Leaving the hospital WITH Luke :)

 

Little man's first ride in the carseat

mmm...is this a foreshadow of their future relationship?

Much better :) Alex couldn't wait to hold Luke. Within a minute of being inside, Alex asked to hold him.

Daddy teaching Alex to hold Luke's head... only under close supervision (and clean hands) do the kids hold Luke.

Daddy and Luke

Our sweet little man...

Alex and David opening gifts "from Luke"

Luke napping with his gifts from Alex (a teddy bear) and David (a stuffed football rattle)

David was so sweet peeking in at Luke.

Me and my precious babies

I am so thankful and blessed to be a mom! What a huge responsibility! 

Am I really old enough to have kids? Ha!

Luke is in an Open Crib!

Luke reached 4 pounds yesterday and 4 lbs 1.5 oz today! He was put in an open crib today. If he maintains his temperature (b/w 97-99) and continues to gain weight, he can go home Thursday. I'm excited, but not getting my hopes up. I want Luke home, but am praying that God will allow it when it is safe for Luke. I don't want to rush things.

Luke started out in the open crib where his incubator was. The picture doesn't show, but he looked so much smaller in the open crib.

Luke made it into a second outfit today after he spit up on the first. He also had 3 poos in 1 hour. I think he's functioning just normal.

So sweet...

Because the NICU was almost to capacity with babies, Luke got moved to a private room. It is awesome! It is quieter, much more private, and there are no bright lights blaring in his eyes. So thankful!

Luke still has a window view in his new room :)

Thank you to all for continuing to pray. Only through God's strength have we endured the last 4.5 weeks. He has sustained us all even though Alex is so ready for our family to be "normal" again. She lets me know that with wimpers, whines and/or tears every day :(  Unfortunately, she has started having tee tee accidents again, too. I think the stress is affecting her in many many ways. Hoping her stress goes down when Luke comes home. Pray that we can all get more sleep/rest. We are all sleep deprived for various reasons.
Thank you!
 

Life at the NICU

Several people have asked me what my day looks like. Currently, my mother in law or mom (whoever is here that week) takes me to the hospital for Luke's 9am feed. Then, we go right back home. Then, a ride comes to pick me up at 11:15am so I can make it in plenty of time for his noon feed. I then stay at the hospital for his 3pm feed. Then, I leave about 4pm each day. This is the overall view. 

However, if you have never been in the NICU, many steps must happen just to go see your baby. So, getting to the hospital early is important to get it all done (especially in time for a feed :)

Step 1: Sign in at desk (and sometimes have to show ID)

Step 2: Grandaddy scrubbing in - Visitors to NICU should wash/scrub hands up to elbows for 3 minutes with scrubber and special soap. Needless to say, my hands are sooooo dry and rough after doing this multiple times a day.

Step: 3 - Putting sterile gown on over clothes

Then, I can walk back to Luke's little corner with a window view to visit him.

Our little area where I visit and nurse. Screens are put up for privacy when I nurse. Recently, we were moved closer to the window to let another baby have his above area.

Looking at and talking to Luke through the little door on his incubator. Notice he is on a special gel pad to protect his head.

Wiggle worm Luke often gets off his pad and ends up perpendicular to it!

Stretching

After I nurse each day, I go to this small, narrow pump room to pump milk as mama moo cow makes a lot more than little man can eat!

"Fun" at home with Alex and David

First time ever that a kiddo has written on walls :( I will say it wasn't on purpose though. The kids were coloring with markers and started playing chase. I told David to put the markers down before he kept running. He did not obey and when he ran by the wall (twice), he was holding them out and it made a line down the wall.

First Setback

Luke had his first setback last night. He had an apnea and brady last night. This is most likely due to being taken off caffeine 4 days ago. Also, he went to all breastfeeding and bottles yesterday, but didn't eat as well through the night. Lost a little weight, too :( Pray he gets endurance and strength to breast and bottle feed all 8 feeds/day and doesn't have anymore apnea spells (where he forgets to breathe).

I increased breastfeeding him 3 times a day today. He did well so I am going to try 4 times tomorrow. Praying he takes more from the bottles that he will get tonight.

I'm at the hospital a lot more as I am increasing the number of times I breastfeed. I miss Alex and David terribly while there, yet I cry when leaving Luke. It is a catch 22 and it stinks. I miss whoever I am not with. I just keep telling myself that this is a temporary phase in our life. Alex and David have done much better this week, but I hate being away from them this much. Whew.... Praying the Lord sustains us all.

Conquering the Feeds

I cannot believe Luke has been in the NICU for 3 weeks and one day. Thankfully, the time is going by fast even though it has been chaotic. He is now 33 weeks and 6 days old gestational. Luke has continued to gain weight (currently ~3 lb 12 oz) which is an answered prayer especially since we have increased the number of breastfeeding to 2-3 times a day. He successfully took his first bottle tonight also (took 30cc which is 3cc more than his scheduled tube feeds :) As hesitant as I was about them introducing the bottle, I have learned that it is necessary for NICU babies to expedite coming home. He has to be able to take 8 feedings/day by bottle or breast and still gain weight to be able to come home. Of course, I cannot be at the hospital for all 8 feedings so the bottle was inevitable. Thankfully, I have also learned that preemies do well switching back from the bottle to breast and vice versa. Once we get him home, I'll be able to breastfeed all his feeds...we just need to get him home!

To be able to come home, he must meet ALL of the following criteria.

Luke must:

1. be 35 weeks gestational age (next Wed, July 30)

2. be over 4 pounds

3. be able to regulate his temperature outside of incubator

4. be able to take 8 feedings/day by bottle or breast and still gain weight.

So, the earliest he could come home is July 30. We are hopeful that he will depart the NICU sometime next week!!! Please pray for him to be able to meet the above criteria to come home.

Also, please continue to pray for us to find ways to make Alex and David feel super special as we are gone often. They have never been away from us this much. I notice them being more clingy, fussy and sometimes distant. David even told me while I was changing his diaper tonight "miss you, miss you." it was so sweet, yet sad. I'm usually gone from 11:15am-4:15pm and some nights so they definitely feel this. As much as I want Luke home, I'm already praying for ALL of our family to be prepared for it. It will be a whole new challenge with Alex and David then as I will be spending so much time caring our little newborn. Please start praying for their adjustment and how I will handle it all when Luke does come home.

Updates: Alex and David are 100% better. Luke's eye seems to be better as well.

I looked into the scheduling website and got a bit overwhelmed with it. So, I'm just going to throw out there that if you are available to drive me to or from the hospital, please comment here, email, call, text, or facebook me. Currently, I need a ride to pick me up at 11:15am to go and then someone to pick me up from the hospital at about 4pm to bring me home. I'd like to try to add one more shorter trip there a day to get a 3rd feed in, but don't know when or how yet as David and Alex need me, too.

I think that is all for now. I'm exhausted as I do not rest with the kids in the afternoon anymore since I am at the hospital. Gotta go pump and try to get in bed soon.

Love Y'all,
~rebecca~

I love this pic of Luke reflex smiling even though it is a bit distorted because of the angle making him look chubby. ha! There is not anything chubby about him. He is so narrow and tiny!

Mimi holding Luke for the first time
Mimi is mine and the kiddos' babysitter for most of this week.
Thanks Mimi for helping in so many ways with the kids and house!

Grandaddy holding Luke for the first time

Playing in the rain and it's aftermath one afternoon with cousin Amber and some neighbors

They had a blast!

Rough Week, But Some Bright Spots

The week started with David running fever on Monday which meant that he only wanted Mommy to hold him most of the day. So, I did not get to go see Luke this day which made me very sad :( I was glad to be able to take care of David, but missed my other lil man.  On Tuesday night while visiting Luke, my mom and I noticed his eye matted shut and green guke eventually leaking out as the nurse cleaned it with a warm cloth. He now has eye drops to help with his eye infection :( When I picked up Alex from Kids Day Out on Wednesday, she was running fever and still was when she went to bed tonight :( 

Amidst this rough week (in which the tears came back), I did get to try to breastfeed with Luke for a second time today. He latched on Sunday, but didn't really suck much. However, today he did great for his second try (major bright spot!). He latched and sucked off and on for over 30 minutes. The lactation nurse was there today to offer any support I needed in nursing a preemie. She was so impressed with Luke that she left after about 5-10 minutes as he was doing great. She said it was normal for him to take lots of breaks while nursing in the beginning as he would get tired easy. So, I was not concerned at all that he took a 3-5 minute break after each sucking session. The tricky part about starting to nurse is that he has to work for his food and will most likely lose a little weight in the beginning as he is burning calories to eat. The goal is to be able to breast feed and gain weight at the same time. Please pray for that progress. I can only try once a day with him until they see his weight continue to increase.

Other bright spots have been the meals we receive every other night. It has been a huge blessing and help as our days are chaotic. Many evenings we are returning from the hospital just in time to receive a meal. Thank you so much to those who have brought or sent a meal so far! We are so grateful! Encouraging cards, texts, etc have made our day, too! Thanks everyone!

Many of you have asked how you can help in other ways. Currently, I need transportation to the hospital during the day. It has been quite complicated organizing childcare and transportation for me. I might try a scheduling website that a friend suggested to me. So, stay tuned if you would like to sign up to help in those ways. Thanks to all who are so willing to help during this time. And yes, that even brings tears to my eyes often!

I so look forward to bringing Luke home (probably in about 2-3 weeks) as I miss him when I am not there. Yet, I miss my other kiddos when I am there. This is definitely an emotional roller coaster! However, my rough week was brought into perspective when I met a mom and a grandma who had babies in the NICU. Both of their babies were born very early (22 and 24 wks) with problems in which they needed surgery or were still on the ventilator or had setbacks, etc. This made my "rough" week seem like cake and made me so thankful for my Luke and his amazing progress. Thank you Lord!

Prayer Requests: Please keep praying for continued positive progress with Luke even with the initiation of breastfeeding. Pray he continues to learn, gain endurance and get better at breastfeeding. Also, please pray that his eye infection heals soon and does not affect his vision. Pray for Alex and David to get well and that Chris and I do not get their "fever bug." Pray for us to have wisdom in how to work out the logistics of childcare and transportation. Finally, please pray for our family during this time. Pray for each of our kids to feel special and loved even though we cannot be with them as often. David and Alex are definitely extra clingy (and sometimes more fussy) when we are around as I still think their security is being rocked with our trips to the hospital. Pray that our family time together is maximized when all together. Tonight we took a break from going back to the hospital to have a family movie night. I think that was good for us all, but of course, I missed Luke, too. Thanks for praying everyone! We so feel it.

Looking at Mommy. Luke is often alert when we go to visit him.

Grandmother holding Luke for the first time. Grandmother has been a huge help at the house with the kiddos, laundry, dishes, transporting me, etc.... Thank you Mom!

Little Man sleeping like a rock after our first successful
breastfeeding session today :)

Notice the ipod playing in the background. We just added the alarm clock that charges and plays the ipod at the same time as the other speaker's battery was dying every 24 hrs and the ipod was running out of juice often. We hope the incubator and ipod together will help drown out all the beeps and other babies crying in the NICU. fyi... Luke does not cry anymore now that he got his CPAP off a while ago :)

Daddy Held Luke

Luke's head IV came out Friday morning so Daddy got to hold Luke on Friday night. Right now, he has no IV at all which is another huge milestone. His feeds have gradually been increased and are at 18cc. He is still slowly gaining weight which is great, too. We get to try breastfeeding this week as well! I think we will start trying just once a day. We are so thankful and excited about his positive progress. The Lord has him in His hands. Thank you all for praying!!!

Luke looking at his daddy :)  so sweet!

Peacefully sleeping

Luke so peacefully sleeps on mommy. I love that I can hold him every time we visit him now. I hold him skin to skin to help with his temperature regulation, etc...

Update on Mommy: After a follow-up appointment with the doctor last week, I learned that I cannot be alone or drive for 6 weeks. I was shocked as we thought it would only be for 3 weeks. I feel great and totally myself so I was a bit frustrated. However, I know it is a very cautious and conservative way to go because of the atypical seizure I had. As much as I do not want to be compliant, I will be so I do not put us all at risk. Please pray for us as our logistics for life just got more complicated with this extended restriction. Thank you!

Trying to keep life fun and somewhat normal for Alex and David. However, not sure how normal it is to dress up like cows for free Chick fil A :)))

Holding Luke

What a surprise! When I went to visit Luke today, I looked in his notebook of his stats that his nurse updates daily. I noticed his new weight was 1529 grams (~3lb 6oz) which was up 100 grams from yesterday. I had not seen a gain that big yet so I questioned the nurse if that was correct. I was getting excited as I knew they wanted him at 1500 g before I could hold him. The nurse confirmed it was correct. So, I immediately asked if I could hold him as tears welled up in my eyes. The nurse was so sweet about it and made sure his temperature was good before letting me hold him. After we took pics, he was covered with 2 blankets and I got to hold him for about 15 minutes! I could have held him all day. He was so cuddly and of course, light as a feather. This made my day as I did not expect that today. So thankful for this special time with Luke!

Chris nor I got to hold him tonight as a new IV was started in his head after his hand IV started to infiltrate his hand :( The IV looks terrible on his head, but may only be there one night. If he tolerates the clear fluids only through it with no extra IV nutrition, he will have the IV taken out completely. That would mean he would be on breastmilk only for nutrition at this point which is great progress. Praying he does well so he can lose the IV totally.

The nurse put this sweet sign on his incubator.

Reading to Luke

Luke is continuing to progress great. He is gaining weight in which he recently passed his birth weight of 3lb 2oz to 3lb 3oz. His tube feeds have been increased to 12cc per every 3 hours now. We were warned that Luke could have apneas (stop breathing while sleeping), bradys (heart rate droppings), not tolerate feeds as well as other setbacks. However, we are so thankful that he has had no setbacks thus far.

Tonight, we took some books to the hospital to read to Luke and use to decorate his area. He was so attentive to our voices. It was precious. Even though Luke is so small, he didn't look as tiny to me tonight. Maybe I am used to seeing him little or maybe I could see his growth. I still crave to hold his cute self and hope to this week. The latest update on when that will be for me is when he is 1500 grams. He was 1429 today so hopefully he'll reach 1500 this week.

Today, Luke's nurse said he was being bad because he kept pulling his leads off. He was so smart. I watched him. A lead cord would brush against his foot and he would get the cord between his toes and pull it until the lead came off. ha! If he only knew that mama wants those cords off of him, too!

Thank you again for all your prayers! Please keep praying for Luke to grow strong and gain weight. I think he will have a head ultrasound done tomorrow to see if he has any brain bleeds which is routinely done on preemies on their 10th day of life. Thank you for praying for me as well. I have felt so much better physically and emotionally yesterday and today. I don't think I even cried yesterday and today :) I really feel a ton better! Alex and David are still crying/fussing more often, but I think they are doing better overall the longer we are home.

 

Luke was very attentive as we read to him tonight :)

 Daddy reading to lil man

Mommy reading to lil man

 Ever seen a preemie with a mullet???

 Luke's poor feet are so dry and his heel is so bruised from all the pricking for blood. 

Tonight, I asked if we could put lotion on his feet and his nurse said no :(

 Daddy loving on our lil man...so sweet!

Bro and Sis sharing a homemade smoothie pop