38 & 12

Relaxing

Day: 86
Gestationally: 38 weeks
Chronological Age: 12 weeks
Weight: 6 lbs. 10 oz.

Favorite Song: Santa Monica by Everclear
It was the only song that I knew all the words to that popped into my head. He particularly likes the base line I do.

Favorite Game: Blow Hand with Daddy & Kissy Hand with Mommy
Basically same game...Kell puts his hand up by our mouths Micah blows a puff of air at his hand and I kiss his hand. He keeps his hand there until the game is over. If we stop before he has decided the game is over he puts his little hand on our mouths.

Favorite Place to Be: Breast
On it, under in, next to it...it's his happy place.

Favorite Food: Breast milk
Like I said it's his happy place. We're working on him getting a full feed there. So far his best intake is 32cc and his full feed is now 58cc (2 oz is 60)

Favorite Nightcap: Breast milk in a bottle
WHAT!?! Yes, our big boy is working on bottle feeding!!! In fact he ate a full feed from the bottle for the first time last Saturday night. They made a little sign for our door and everything. I was so excited when I saw the sign I did a little dance as I walked into the room. He went for the encore on Wednesday night and has since been close to a full feed but inconsistent. He has to be consistently taking a full feed by mouth before he can go home. They will not send him home with a tube so that's going to be the big challenge to get him to eat consistently. Another prayer request!
Micah was given a bottle feeding lesson on Wednesday. It was the first time either of us had witnessed a bottle feeding let alone administer it. (All of his bottle feedings usually happen when I'm not here.) Feeding Keller a bottle is nothing like feeding the other boys. You have to him positioned away from you, tilted on his side, with the bottle titled just right, a finger ready to support his chin, and be on alert for any changes in his skin color or noises. It's not a relaxing process. Micah and I were both sweating after he was finished.

Tuckered out after feeding

Eye Update: I was able to be here for his eye appointment and I was really glad I was....some where along the line we were given some miss-information last time...both eyes are Stage 2, Zone 2 his right eye is just slightly worse than his left but the eye doctor said it was so slight that it didn't really count as a difference. There wasn't any change from two weeks ago so that is good news. He'll be back to check Keller's eyes in two weeks. We're praying that this week's no eye change means that they will start healing themselves. So please pray, pray, pray!

Kell had a few days where he didn't have any desats and was down to 1/32 of a liter on his oxygen and was eating like a champ. It was very exciting! Yesterday he started getting dippy again and is having several desats an hour. They don't last long at all just long enough to get his bell to ring and then he pulls himself up. His oxygen level is bouncing from 1/16 to 1/32 depending on how many dips per hour. The nurses are great at keeping him at the lowest level of oxygen that he needs. They think it is his hernia that is making him extra gassy which is causing him discomfort which is causing him to desat. He has been squirming more and will give a little cry out. This is hard for me because he's not a crier so I know when he does cry he means it.

I've had an emotional week. Basically, I can cry at the drop of a hat and will sometimes do so. I know its fatigue but I still hate it. I don't like being a cry baby but I think 86 days in a NICU will do that to you. I was stressing myself out with long to-do lists, reading the "going home" sections in the preemie books that list all kinds of scenarios that most likely won't even apply to us and we'll handle it if they do, missing Sky, feeling sad for Kell that he even has to go through this, etc. The first line of my devotional yesterday was, "Stop trying to work things out before their times have come." Nothing like the Word to call me out and put me back in my place. So my goal is to pray each morning and ask God for my to-do list and then not worry about anything else. You can pray about that, too!

Kell is calling for me so that’s all for now!

Lots of Love,
Shelly

BTW thank you to all that have signed up for our extended meal schedule! We REALLY appreciate it!

82 days and counting

3-26

Sorry folks it's Micah here giving the update today so today's post won't be as witty as usual but beggars can't be choosers so here it is.
Shelly and I are hanging out at the hospital today while Grayson and Asher at school.  At the moment Shelly is giving Keller his breakfast.  I am sure you all know what this means by now.  Keller is doing good he is gaining weight.  He is up to 6 lbs 6oz 17 3/4 inches and growing like a weed.  He is a pretty happy little guy only really fussing when he needs something.  Shelly and I are so grateful with his temperament as we listen to other babies down the hall who are constantly crying.  It must be so hard for those other parents listening to their babies cry and not being able to make them happy.  We feel blessed.
As Keller has been been doing better and better on his day to day goals Shelly and I have been looking into the future to try to figure out what it will be like once he gets home.  The doctors and nurses have been prepping us for what it will be like having a baby with chronic lung disease living at home.  For the next two years Keller will need to have a bit of a sheltered life.  This means no daycare or church nursery for 2 years and limited time around other people and kids.  This will be quite a shock to the Dolen household as we are always doing things with friends and family and lots of other kids.  The doctors tell us that once he is two his lung material should have regenerated itself and will be more immune to infection.  Up until that point he can easily get infections that could lead to hospitalization and major set backs in his lung development.
 
We are proud of Keller and will want to show him off to everyone but we will have to wait for a while for his safety.  We know all of you are also anxious to see him in person.  As of this morning our blog had 39,199 views from all over the world and I am sure all those viewers would love to pinch his chubby little cheeks but patience is the key word here.  Your time to pinch will come.
Speaking of patience Keller was born 82 days ago and we have been at Evergreen for the last 89 days.  We are still hopeful for a mid to late April date to show Keller what North Bend looks like but we will keep waiting until the doctors give us the OK to leave.  Until then we know he in in great hands with the Evergreen NICU staff.  They are an amazing group of people.
Shelly and I are both getting a bit tired but we will keep pressing on as we are seeing the light at the end of the tunnel.  We want to thank you all for all of your love and support.

Micah
 

36 Weeks

Weight: 5 lbs. 15 oz.

Length: 18 inches

36 weeks gestationally

Kell is slowly weaning down on his oxygen. He's gone from oscillating ventilation right after birth, to ventilator, to CPAP, back to vent, back to CPAP, back to vent, to high flow cannula, to 1 liter low flow cannula, to an even lower flow (1/32 of a liter) cannula with a portable tank. I'm so proud of my little champion!

Aunt Pati came to help us work on our nesting list. We had planned on doing so many projects before the twins came but I was so sick throughout my short pregnancy that I just didn't have the energy to complete any of my projects. Obviously, I haven't been tackling the projects since the early arrival of the boys so Nan (as the kids call her) came over to paint our living room, hallway, and hall bathroom. Micah and I are so grateful for her generosity, she is so awesome!

Last night, Pati and I had a chance to chat after the kids went to bed. She asked me questions about what my days look like and I thought maybe other people might be wondering too.

So here is a week in the life of this NICU mama...

Mon. - Wed. Asher has preschool from 12:45-3:45 so typically two of those days Mike (Micah's dad) picks Asher up at 9 and takes him to his house until it's time to go to school. Mike was picking him up at the hospital because Asher said he wanted to see Keller, but lately Ash hasn't wanted to leave and Mike has had to carry him out of the hospital crying for his mama. I think he just doesn't like the idea of leaving Keller alone with me. He's not ready to share my heart with him. So now Mike is picking him up at the house. On the days Mike gets Ash I stay at the hospital until I have to head back to the Valley to pick up Ash. On the days I have Ash, we typically are at the hospital till noon. We admire Keller, play games, do little learning activities I find on Pinterest, read books, and eat snacks. (Ash can't be in this room without at least two snacks.) I don't hold Keller on these days because there just isn't enough of me to go around. Asher needs help with things and gets jealous of Keller. This does not make for a nice cuddle with Kell and it's not good for him to be jostled around a lot by having to put him back in his crib every two seconds.

Thurs. My friend, Lyndsey, watches Asher so I can be here to attend rounds (the weekly meeting with Keller's team) and spend the day focusing in on Keller's care.

Fri. varies sometimes I set up play dates for the boys, or just Ash & I come for the morning, or Gray, Ash, & I come for the afternoon.

When I am here alone I get the update from the morning and the night before. I check on Kell's comfort and either adjust him or more likely pick him up and cuddle. At 11:20 the nurse comes in for his cares which include check his temp., change his diaper, weigh him to get his pre nursing weight. Sometimes I do the temp and the diaper changes, but a lot of the time now that I am nursing I get ready for our nursing session while the nurse takes care of the cares. At 11:30, I nurse him from anywhere to 10-15 minutes. He gets weighed again (yesterday he nursed his personal best at 32cc which is over 1/2 of his 50cc feeding. Today's 11:30 feeding was at 24cc) to measure how much he has eaten and then gets the rest through his feeding tube. I hold him during his tube feeding and once he's done eating he gets swaddled and goes down for a nap while I pump. After I pump, I measure the milk, put the milk in the fridge, clean the pump parts, and then grab Kell for more cuddles until 2:30 when I nurse him again, pump, and then after that I usually have to jet out of here to get to Ash on time.

After I get Asher, we head home to meet Gray off the bus and then it's homework, pumping, dinner, pumping, family time, pumping, bedtime, pumping, quick clean-up, pumping, time with Micah, pumping, bedtime for  us, pumping, sleep a little, pumping, sleep a little more, pumping, wake up, pumping, get ready for the day, pumping, head off to the hospital. So that's pretty much what my days look like only with a cotton wrapped brain that has the attention span of a gnat. I keep promising Micah that I'll be back to my regular crazy self someday, fingers crossed that it is sooner than later.

Lots of Love,
Shelly

35 & 10

Okay so I actually wrote this last Friday and am now only remembering to post it. Sorry! This is my brain these days....
Keller is 35 gestational weeks and 10 weeks old this week. We've been here in the NICU for 72 days. Crazy!!! There are a lot of new babies this week which means lot of new terrified looking parents. That was us 72 days ago. I feel so sad and sorry for them. Babies shouldn't have to come here. They should just all be full-term healthy babies...a girl can dream!
Keller is now 5 lbs. 11 oz. He's still having quite a few desats but he usually is able to get himself back up pretty quickly. At his 11:30 am feeding he nursed and ate 20cc which is just 10cc shy of an ounce. (They weigh him before he nurses and then again right after so they can see exactly how much he ate.)Yesterday he ate 14cc and it took him about five minutes longer. I'm so proud of his progress!
Sadly, Keller's eyes are not doing as well as his feedings. His left eye is now Stage 2 ROP. This has gotten worse in the last two weeks. While his right eye is doing better than his left, it's still immature. Pray for healing and proper growth of his eye blood vessels.
His personality stills seems to be an over all chill dude. He cries when he needs something...diaper change, food, change of position, cuddles from mommy. Even then he usually has just one or two outbursts and then is done. I am so thankful that he isn't a fussy baby. I think it would make all of this so much harder.
Asher is obsessed with the nicknames we have all started calling Keller. He goes through them with me almost everyday (right after he asks when we get to go to the hotel again...the one we went to during the power outage...maybe to celebrate Kell's 1 year NICU graduation anniversary?) I'm sure they will evolve as he grows just as the ones for Asher & Grayson have. So here are this moments nicknames for Keller...
Mommy: Kell, Kell Bell, Bug, Love (I call most kids Bug and Love so that doesn't really count.)
Daddy: Little Buddy
Grayson: KID for Keller Isaiah Dolen
Asher: Killer (even though he means Keller), Kell Bell, My Baby Brother Keller

Prayers: Growth and healing for both Kell's eyes and lungs.

Lots of Love,
Shelly

Physical Therapy

Sucking on a pacifier is part of Kell's physical therapy to practice his suck, swallow, and breathe skills. He still gets tired easily but he'll build his stamina as he grows and heals.

Please pray for his eyes and lungs that they grow and heal. That he will not suffer from side effects of being premature and of all the interventions he's had for the past 10 weeks. That he will continue to grow, heal, and become the smart, strong, beautiful, child of God that I believe he is.

Lots of Love,
Shelly

35 Weeks: A very quick update

Keller in his crib with the special quilt Nana made.

• 35 weeks gestationally as of yesterday.
• Weight: 5 Lbs. 6.4 oz.
• Length: 17 inches
• Calories down from 28 to 26 per feeding because he's doing so well with gaining weight.
• Eye appointment today, praying that his eyes have matured.
• Had his first successful breast feeding session yesterday.

Getting bigger everyday!



I gained another 2 oz!?! Yessss!!

 Keller is now 4 lbs. 12 oz.! He's going to be a five pound baby by the weekend if he keeps up this rate of growth! We just need him to stretch out a bit to give his lungs room to grow. Yesterday, he got to wear his clothes from home and I was so nervous about pulling his onesie over his head that I made the nurse, Sheri, do it. Today I was brave and changed his clothes and the biggest poopy diaper I've ever see Kell have all by myself. Well, almost....Lexi did unhook & hook back up the cannula during the pull the shirt over the head move. I was nervous, feeling like a total rookie instead of an experienced mama. It took me the longest time to complete the task, but I did it! I know I'll feel more comfortable and confident the more I do it. He's just so little, it's scary!!
Tonight Grayson was asking when he would be able to hold Keller. I told him it wouldn't be for a while and he got a little upset. I completely understand his desire to hold Keller but the idea of anyone handling Keller besides Micah, me, the nurses, and doctors makes me uneasy to say the least. I'm sure as he gets older and stronger I'll start to feel differently but right now the rule is look with your eyes and not with your hands.
This weekend it's all about baseball and homework. Grayson's baseball season has started up. We have a new coach this year with a few of his teammates from last year and Gray loves it. I'm looking forward to when the games start. He's also working on a project for his school's science fair. All the 4th graders do a project and Gray is pumped about it!
Asher is going to be the special person next week at school. He brought home an All About Me poster and the class stuffy, Froggy, to spend the weekend with us. It reminds me of my kindergarten class (my kinders brought home Curious George) and made me miss my school kiddos today. It's been so long since I've seen them and I know they've all grown so much. But I'm really excited to do this activity with Asher. It's so much fun being on this side of the special person of the week. I loved seeing the excitement in Asher's face as he announced that he had Froggy. My big boys are getting so big!

Prayers:

·         Keller grows in length so his lungs have room to grow.

·         Kell’s lungs heal and grow.

·         Kell’s eyes develop properly.

·         Kell’s brain develops typically and there isn’t any damage from being so premature.

·         Peace for Grayson & Asher as we continue on this crazy journey. I want them to keep in their hearts that they are greatly loved by both Micah and me even when our attention is on Keller.

·         Micah’s contract with Swedish came to an end and we’re praying for a new opportunity to arise. God is really teaching us to fully depend on Him!

·         Rest & energy for me. I am exhausted and my brain feels like its functioning in slow motion with large sections that periodically pause and delete items. Not good.

Thanks for your prayers!
I feel so bad that I haven’t been very good about thanking people promptly. Please know that if you have done something for our family that we SO appreciate it! I just am not operating on normal function and I apologize. I hope to get caught up someday soon. Thank you for your grace and patience.

Lots of Love,
Shelly

Check out Kell's new crib!



Sweet Crib Dreams



A little better look at the set up.

Today was one of the most exciting days I've had throughout this experience. I walked into the NICU this morning nervous because they did another MRSA test (remember they do these on everyone every two weeks) yesterday and I didn't want to see the dreaded sign on Kell's door. Thankfully, my prayers were answered and everything came back negative so no sign. Instead I was greeted by Kell's nurse who informed me that after the bath we had planned for today, Kell would be moving into a crib and wear clothes! I couldn't believe it! Honestly, it wasn't even on my radar for this week and so I was totally unprepared. I didn't have his cute quilt that his Nana made or any of the sweet little preemie clothes we have for him at home. Thankfully, the NICU has bedding and clothes for him to use until I bring in his stuff. I was so thrilled with his new bed that I seriously wanted everyone to see what a big boy Kell had become. If I could have I would have pranced up and down the hall pushing Keller in his crib for all to see. I briefly thought of calling Dr. Walker's office and claiming there was an emergency just so I could show off Kell's milestone to someone else who could appreciate how far he's come. Then I came to my senses and realized that I was starting to go to my crazy place and Dr. Walker would see him in his crib the next time he popped by to check on him. I have been grinning from ear to ear all night so happy that my little champion is now in a crib!

P.S. Keller is now 4 lbs. 8 oz. & 16.9 inches long. This means he's over double his birth weight!


There's at least 2 oz. in those cheeks!



Thanks so much for praying for all of us!

Lots of Love,

Shelly

8 Weeks

Napping during his lunch feeding.

Yesterday Keller was 8 weeks old! As I held him I prayed over him from the top of his head to the tips of his toes. I praised God for how far he has come and how much he has grown over the past 8 weeks.

8 weeks ago Keller was the one who struggled. Skyler was a fighter from conception so he was equipped for the battle of those first moments of life. Kell had enjoyed a cushy existence in the womb and struggled with being forced out so early. His skin was so tender and translucent. He had terrible bruises and sores from the tape that held the sensors that monitored him. I first bonded with my tough little Skyler. It was hard for me to see Keller's thin skin hurting, I would actually physically hurt when I looked at my sweet little boy. Little by little Kell's skin healed and before I knew it we were having our first cuddle session of Kangaroo Care. That was one of the best moments of my life; I don't think I have ever wanted to hold a baby more!

Now today I sit on our little bench in Kell's room with Asher cuddled up next to me. We just spent that last ten minutes marveling over what a big boy Keller now is. Asher delights in his every movement, giggling and adding his own commentary to Keller's thoughts. These moments bring a joy to my heart that cannot be described. Two of my precious boys...ahhh.

Keller is on day three of an isolette temperature of 28.0. We're getting closer to being ready for a crib!!! For now his high flow cannula (remember this is not a vent, he's breathing on his own with just some support of extra oxygen and pressure to help fill his lungs) is at 4.0 and 24% oxygen. He had his last dose of his diuretic and it seems to have done its job by looking at his hands as well as his oxygen levels. His eyes are still immature but are at the proper growth stage. If all goes well his next appointment in two weeks will show that his eyes are matured and we don't have to worry about his eye development.

Here's Keller's spring door sign. I think this will be the last one I will make for his NICU door. Fingers crossed that he won't need a summer one!


I added his middle name to this one since I was told his other sign didn't say boy. Clearly they don't know me....if Keller was a girl her sign would clearly say girl with lots of pink & glitter!


Thank you for praying for all of my sweet boys!

Lots of Love,
Shelly