Thankful List

Kell, Asher, & the Jellyfish. Kell can't keep his eyes off of them!

Well, bummer! No video of first roll over. It cut off right before. Oh well. I know it happened!

I saw this post on Facebook about a 2 minute challenge where you write out a list of the the things you are grateful for. I love it! I can get so caught up in what's going wrong or what I want to happen that I forget to be thankful for all the wonderful things that are right in front of me! I am going to get a journal and start my lists. I would love to say that I am going to do this daily but I'm not sure I could keep that up so I'm going to shoot for weekly.

Here's what I am thankful for today....

• 16 lbs. of wonderful who is napping peacefully in his car seat after dropping Asher off at day camp.
• Encompass day camps! Both the big boys are going to camps there this week and they are having SO much fun! Gray goes all day and Ash goes in the afternoon. It's been so fun having some time with Ash in the morning and then quiet time with Kell in the afternoon.
• Starbucks Gift Cards...nothing beats getting a free coffee! Thanks Jess for the birthday present!
• Jellyfish Craft that Asher loved making with me yesterday and they provided hours of entertainment for both Asher and Kell today. I made paper divers for Asher to have swim through the jellyfish and Kell watched their tentacles dance in the breeze of the fan.
• Kiddie Pools! Last night we bought the boys a big kiddie pool. I just finished filling it up this morning so it will be ready for the boys when they get home from camp this afternoon. My little water babies will be loving life in the heat this week!
• Grapes....not the kind you are thinking of. That's what the kids call Great Grandpa & Grandma Dolen. We had a lovely visit with them last night. Kell talked the Grapes ears off. We were so happy that they got to hear his little voice and see how much he's grown. The Grapes were thrilled to see him and the big boys. We're like a tornado ripping through their house but they love every minute of it!

Lots of Love,
Shelly

Rolling

We have a roller! Kell rolled over for the first time on his own today. He's spent the past week pushing against me to give him enough leverage to get all the way over. We have been eagerly awaiting this event and I can't tell you how thrilled we were that we actually go to see it with our own eyes! I think I may have even caught the whole thing on my phone. I haven't had a chance to look at it yet to see if I did or not. The big boys spent the weekend with Nan and came home today so we were busy catching up with them and playing in the yard. It was a gorgeous day today!

Type again soon!
Lots of Love,
Shelly

This isn't from today but I haven't had a chance to upload the new ones.

Great Expectations

On the 5th of July, Kell turned chronologically 6 months old. I can't believe how quickly the time has passed. Micah and I have been doing a lot of reflection and have been able to share new thoughts and feelings that we had during our crazy hospital/NICU journey. With some distance and time to reflect we have struggled with expectations. We each had a set of expectations for the pregnancy; a set for my hospital stay; a set for the delivery; a set for the people around us; a set for each other, a set for life after Sky, a set for life post NICU, and the list goes on and on. When things exceeded our expectations it was a lot easier to take than when our expectations weren't met.
We had so many people praying for us and that WAY exceeded our expectations. There have been countless times when I have had a stranger come up to me and say, "Shelly? I know you don't know me but I've been praying for you and your family." How amazing is that!?! It is such an incredible blessing to know how many people cared for our family during our time of need. We have so many family members and friends that were AMAZING and there for us 100%. It is awesome to know that we have such an incredible support system. How lucky are we that we know who "our people" are!?!
Kell's health is exceeding our expectations. A couple of weeks ago he got a cold that immediately went to his chest where it became a nasty chest cold and earned us an extra trip to the pediatrician. During our visit, I was told to expect to be at the doctor's office every couple of days for the next 10 days or so. Praise God that one visit and the humidifier was the only intervention that he needed. It was a reality check for me for what this cold & flu season brings. I am not looking forward to it and I pray that Kell will sail through with no major illnesses that compromise his lung health.
For sleep I can expect that he'll go down anywhere from 10:30 to midnight then up at 4. He will usually go back down with me for an hour or two and then is typically up for the day. Sadly, he's not a napper...yet. He will nap, he will nap. (Positive thinking works right!?!) He likes to be carried around with me (there are carrying positions that are apart of his physical therapy) so my arms are getting stronger by the day. While I am quite the one armed ninja, you can imagine that it's not super easy to get a lot done around the house so I usually run around like a mad woman once Micah gets home. I look forward to the days of a morning and afternoon nap. I'm expecting this will happen in Sept. once we are back into a regular routine.
We're starting to see more delays the older he gets. At 6 months he should be able to grasp toys and trade them from hand to hand. He grabs my hair and clothes but will not grasp toys yet. So we're working on this. His head stability and neck strength is improving but still is behind where he should be at 6 months. We went from only 3 things to work on for physical therapy to 10. Quite a jump! We just keep plugging away everyday doing his exercises and I pray that we will begin to see that gap close.
The big boys are such brothers! Loving one minute and driving each other (& me) crazy the next. Always the little fashion plates they are already collecting their "looks" for the upcoming school year. For every new article of clothing Micah and I get to watch a fashion show. It's so funny and I can't wait to watch Kell join in this game.
My expectations for the next few weeks? Some fun summer time with my boys & that God will be there carrying us through.
Here is a sweet video of my little guy...I am in LOVE with his coos and he's seriously lucky that there are not chunks out of those cheeks! They are SO yummy!!
Lots of Love!
~Shelly

Super Quick Picture Update!



For Gray's 10th Birthday Auntie Kylah & Uncle Patrick took him to Disneyland!

Kell slept for 7 hrs. one night last week! Amazeballs!!!




Asher LOVES Keller (who is 13 lbs!)



It's sunny today! We went to the park this morning before preschool. 

Now off to pick-up Ash...this was a quick update! Hope you are all doing well!
Lots of Love,
Shelly

Finally An Update!

First of all I want to apologize for not being better at posting updates. I honestly had the best of intentions to do at least weekly updates, but when we brought Keller home on that glorious day in April we basically brought home a newborn. Keller functions perfectly for his adjusted age and not like the almost five month old that he chronologically is. I know that you are all itching to know how he is doing, how we are doing, and what life is like for the official family of 5 so without further ado here is our update....



Kell's 1 Month Adjusted Age Picture

 

Keller has grown so much, he is close to 12 pounds now! Micah calls him the face cuddler because he loves to have his face close to mine. After Keller's hernia surgery we both longed to snuggle. The nurse on duty could tell and suggested that I hold him even though he had only been out of surgery for a few hours. While I wanted to hold him I was really nervous about hurting him. That cuddle session did both of us a lot of good. We both sacked out almost immediately and were nose to nose. I woke up to the nurse trying to sneak a picture of us, she thought that we looked so sweet together. Even now, Micah often finds us passed out together nose to nose or forehead to forehead. What can I say!?! It's our happy place!

Kell has started therapy and it's going well! The therapist comes right to our house and gives me a list of things to do with Kell to help his development. He's been working hard on neck strength and he's not a big fan of tummy time on the floor. He cries and it breaks my heart, but he has to do it. Keller is becoming more social...holding our gaze and smiling at mommy's hilarious antics. It's so exciting to see him making progress. I pray everyday for his development and it weighs heavily on my heart but God's got this.



Asher for Crazy Hat Day at his preschool.

 

Asher....oh Asher, crazy, Asher! He's getting SO big! I can't believe how much he has grown up in the past few months. Micah and I went to his school conference last week (Cutest thing ever! I practically melted in my chair!) and he got a little report card and everything. He's doing great and we're so proud of him! He has handled all the changes with such grace. He is a kind, respectful boy at school and a tender big brother at home. He watches closely to see if Keller has spit up and if he has he wipes his little mouth with such care that it makes me want to cry. Then the next moment he's back bugging Grayson and that takes care of those tears!

Gray's team won it's league tournament tonight. Now we're off to play the other leagues on the Eastside.

 

Grayson my in-betweener. He so wants to be big but he's still my sweet little boy. Asher was doing something yesterday that was melting my heart and I told him that he was precious. Ash asked me if Gray was precious, too and I said no. Ash gave Gray a victorious look (brothers...) until I said he was my Mr.. Handsome. Gray acted like he was way too cool for his nerdy mama, but his eye rolling, grin said it all. He loved it. Grayson has also grown up so much as well and it's hard for Micah and I to see him begin those awkward growing pains. Where did all the time go!?! You can pray for his heart to heal more. His soft heart took a beating this year and it's been harder for him to bounce back.

Sad baseball bear...ready to go home & eat!

 

Micah and I are doing really well. Micah started a new job as a project manager for MN Custom Homes at the beginning of April (never a dull moment in the Dolen household!) and he loves it. We're looking forward to the summer and continuing on our path of the new normal. Part of our new normal will include me staying home next year. We still aren't exactly sure what we can expect from Keller (developmentally) and what his schedule will look like. Not to mention the colds and flues I would be exposed to and in turn be exposing Keller to. After much prayer and discussion, kindergarten just doesn't fit into the plan for next year. It makes me a little sad to think about not being in the classroom but it will be a huge blessing to be home to care for my boys.

 

Thank you so much for loving our family & continuing to pray for us! I will do my best to do a better job at updating.

 

Lots of Love,

Shelly

Homecoming Photos



So excited! Ready to leave Swedish!



Daddy carrying Keller to the car...



First normal car ride! (He rode in the ambulance from Evergreen to Swedish)



Great friends decorated our front door with welcome signs for Keller.

Kell's first trip inside his home. I cried.

Final Countdown...Going Home!

It's the final countdown! Praise God we are going home today! We are going full circle the neo that will be discharging us was one of the noes from the beginning of our journey. He was the neo the day I broke down with tears of frustration from not being able to help Sky. He was the neo who had to tell us that same day in rounds that one more thing would likely push Sky beyond his limit to live and he was the neo to offer condolences at the first set of rounds after Sky had passed. (The neo who was with us when Sky passed stopped by to see Keller yesterday. He hadn't seen him since the week Sky passed. So now all of our favorite noes have seen our big, strong boy.) This morning when the neo popped in he asked us when we wanted to go home. I replied, "Now" & Micah said, "Yesterday." The neo said, "I'm glad I'm here to discharge him." and now we can't wipe the grins off of our faces! This has been such a long journey, one we're excited to close and begin ours as a family at home. Don't tell the boys! We're surprising them! Pictures to come.... Lots of Love, Shelly

Surgery

Today has been a long day and it's only 1:30. Kelly had his surgery this morning at 10:30. When he went in we were expecting to have his left hernia fixed, exploration of a possible right hernia, & if all went well a circumcision. Praise God, all three were complete with an added surprise of a pretty good sized hernia on the right as well. The surgeon came in around 1 to tell us things went well & Keller did great. He's getting settled into his space in the NICU and we're waiting in the family room here at Swedish. Once he's settled they will come get us & we will get to go back & see him. We can't wait! My mom is at home with the big boys today so Micah & I both could be here. It's been such a blessing to know all is taken care of at home. We were joking this morning about this being her opportunity to fulfill her dream of being a stay at home mom. I texted her and asked her how living the dream was & she said, "Clean." Go Mom! I am living the dream of having a wife at home, it's quite nice! Thank you all for your prayers!! Lots of Love, Shelly

Quick update

Last Friday I took the day off of work to pick up Keller to bring him home but on the drive to the hospital we got a call from Evergreen saying that they were worried about Keller’s hernia and that he would not be able to come home with us and they were planning on surgery.

Fast forward to today…

110 days ago Keller was born at Evergreen weighing 2lbs 3oz .  Today Keller weighs 9lbs 1oz and is ready for his next adventure. He was transferred today to Swedish NICU for his surgery tomorrow at 10:30.   He is having his hernia fixed.  Shelly and I are very hopeful that this will cure the pain that he has been in.  He is such a happy little guy and it breaks our heart when he is in pain.

The need for a hernia surgery is common for preemies but it usually happens when they are older but the doctors feel his pain level justifies the risk to do it now.  We met the surgeon today and we feel comfortable that will be in good hands.

If all goes as planned we are hopeful that he will be coming home in 5 days.

Please pray for his surgery and speedy recovery.

Thanks

Micah

Almost home

Auntie Kyle here...

As you all know Shelly posted yesterday that Keller was scheduled to come home today. However, he is still really miserable and the doctors think it's his hernia. He will not make it home today and will be under the watchful eye of the doctors.

Please pray that he gets better quickly and can come home SOON.

Thanks,
Auntie Kylah

Happy Due Date!

Keller is no longer measured gestationally! He's now a full term baby and has an adjusted age of 0. It only took us 104 days to get here! I'm really not that bitter...I'm actually for the most part doing well. Well, actually kind of feeling fabulous right now, but cautiously fabulous. You see Keller is now off of oxygen. I was afraid to say anything because I wasn't sure if he'd really stay off this time. He had gone off once only to return to 1/64 but he's been off for a whole week and he is doing great! The second and final try happened by accident. He kept pulling his cannula down and into his mouth so when the nurse went to double check his weight from the night before she took off his oxygen planning on putting it back on afterwards. During his weight check he woke up and decided his was madly hungry so she quick dressed him and handed to me to nurse. Once he was calm and eating I noticed that we had forgotten to put his cannula back on and he was sating at 100%. So we decided to let him eat and then we'd put him back on if he needed it. He didn't and hasn't. I guess he knew something we didn't. This has become a bit of a theme for him....
Yesterday, right before I got here he pulled his feeding tube out. Since he was once again starving (it had been about 2 1/2 hours since he last ate after all!) we thought we'd just see if he would be able to take a full feeding by mouth and he did!!! 46cc by breast and 30cc by bottle. Ummm...for those of you that don't know that's kind of a big deal. Once he can take all of his feedings by mouth consistently (& doesn't have any events) he can come home!!! He has been tube free for the second day now and is doing great! We're so close! I've been nervous about getting too excited because I don't want to get really disappointed if he ends up staying longer than expected. We haven't been given any dates so I can't tell you when he's coming home so please don't ask. It's hard on us to have people constantly asking us when he's coming home. Soon. That's all we know but we can see the light and it is close! Trust me when I say that everyone will know when he's coming home. We will be singing it from the mountain tops!
Since he's so close and my mom is going to come help me with Kell and the boys she has started coming in for bottle training. It's totally different than feeding a full-term baby so there is technique and a bag of tricks involved. Last night was not only her first bottle training session but also her first time holding Keller. She did a really good job for her first time. She was so nervous that she was hardly breathing and didn't look comfortable at all. Kell wasn't too sure since she was so nervous so he didn't eat, but tonight she's like an old pro and he's chugging down his bottle as I type this.
Micah and my mom will be in charge of bottle feeding because we want Keller to think there is only one way to get food from Mama. Pray that he continues to nurse and that my supply will increase with his needs. My supply has been a struggle lately and it's been really tough on me.

Thank you all for your prayers & support!
Lots of Love,
Shelly

Praises:
Off oxygen
Eyes are mature! No surgery!!! Wahoo!!!
Keller was tongue tied and had a procedure to correct it today and it went well.
Taking his feedings well.
8lbs. 9 oz.
52 ½ cm long

Prayers:
Continued growth
Feedings continue to go well
Milk supply increase!

*New picture will come later....the wireless here is taking forever!

Day 91 update...

1st Walk...no hands!

Somewhere I got off count....ahh my brain foils me once again! Blush....Kell is now 38 weeks not 39, but he's still 91 days so I did get that right. Keller went on his first walk yesterday. A lactation nurse had recommended using a Moby wrap until he gets bigger (at 7 lbs. 4 oz. today it won't be long until he is BIG!) and has more body control to use the Ergo. Moby's are a little tough to get the hang of so I'm getting some Moby lessons here in the NICU. After my first lesson we took Kell for a little spin around the NICU. The lactation nurse pushed the oxygen tank and carried a portable monitor and I carried Kell in the Moby. It was another terrifyingly awesome experience! I was so afraid to take my hands off of Kell that the nurse kept pulling my hands down and telling me to relax my shoulders. It was hard to do, but I did it! We went to visit Dr. Lawson and Kell's old hall then back to our hall and down to the big window so Kell could see that there is a world outside of the NICU. It was kind of a big deal.
Today I was warned today that if the unit fills up again with level 3 babies we will be bumped into the other hall. (I think of it as the graduation hall.) Kell is now considered a level 2 baby and if all goes as planned he should be going home sometime in April. Just incase you weren't aware...it's APRIL!!! So we're talking this month! WHAT!?! I just can't believe it! It's so exciting to think that I'll have all my boys under one roof, but also a little nerve racking thinking of what Kell's needs could be. But I'm not thinking ahead, I'm not thinking ahead...today's mantra.
Overall, today was a good day and I'm thankful for the blessing!

Lots of Love,
Shelly

Prayers:
His feeds have once again been upped so he's now at 65cc. I'm praying my production will keep up with his demand.
Healing of his eyes.
His hernia is starting to bug him more often so while this kind isn't supposed to heal itself let's pray for a miracle or at the very least comfort.
For his overall development is typical...mentally, emotionally, physically.
For the adjustment our family will go through as the "big day" arrives....smooth transition, happy Dolen boys that feel loved and secure, an energetic Mama and Daddy to keep up with all the demands of life in the Dolen Household.

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

33 Weeks

Look at those lips & cheeks! I just want to gobble them up!

Keller is 33 weeks today! The neonatologist came in today to take a look at Kell's puffy hands & feet. She is not thrilled with the amount of oxygen he's crept back up to needing (he was at 36% when I came in this morning). She said he's too big of a boy to be needing that much oxygen. Apparently, he's got a little fluid in his lungs so they are going to start him on a diuretic over the next couple of days. The hope is that this will help him get down to a better oxygen level. *Pray for needing minimal doses of the diuretic and healing of Keller's lungs.*
Other than that he's doing well. We got in some really nice cuddle time. He had a long meeting with B. They seem to be getting along well. I'm going home is afternoon with plans for a movie night with Micah. I think he'll just love my selection..."A Preemie Needs His Mother, First Steps to Breatsfeeding Your Premature Baby" don't you!?! Ha!

Lots of Love,
Shelly

Big Boy!

Doing his stretches

Yesterday, when Asher and I arrived at the NICU in the morning we were greeted by a 4 lb. 2 oz. Keller! He gained almost 3 oz. in a 24 hour period! I was expecting about an ounce because that seemed to be his pattern so I was shocked by his huge growth. I can't wait to see how his little cheeks fill in over the next few weeks. Since it was just Asher and me in the NICU I wasn't able to hold Keller. We had the blanket that usually covers his isolette up so we could see him. While Asher and I were playing some games on the bench, Kell was watching us like he was totally understanding what we were talking about. Asher and I both thought this was the cutest thing ever! Ash took several game breaks to walk over and talk to Kell. He was saying things like, "Hi, Keller (only it kind of sounds like killer but we will work on that) you're so cute! I love you, Keller! Keller you will grow and get big like me!" It was the sweetest thing. I love seeing him embrace his role as the big brother. I am so excited to watch Asher and Keller's relationship evolve as they mature. Micah spent the evening in the NICU for some special Kell/Daddy cuddle time. Micah looked so relaxed and happy when he got home just the look on his face made my heart so happy.

Sucking on his fingers

Lots of Love,
Shelly

*I actually had all of this typed last night, but before I posted I passed out on the couch. I'm looking forward to the day when I have my energy back!

7 Weeks

Picture of the day: Snuggles with Mommy

Keller is 7 weeks old today and it was a good day. Warning total mommy bragging moment, but he is just so stinking sweet and adorable. We had the best cuddles today. He totally passed out on my chest and it was amazing! I can't wait to go back tomorrow for more! We had our team meeting today and here's the update... Kell is now 3 lbs. 11 1/2 oz. seriously that kiddo is gaining weight like crazy! Love it!! He's still on the high flow cannula and they are hoping to wean him down on the amount of force (he's at 5.0) and the percentage of oxygen (he dances between 30 and 26 we want him to be at 21) over the next few weeks. His isolette temp is 30.1 right now, but this is also a dance. He needs to be at 28 and teased us with 29 but popped right back up. We have to celebrate the moments and trust God for the future.


Today my devotional talked about being on guard against self-pity. I have definitely thrown myself some pity parties in the past (usually princess themed since I don't have any little girls, ha!) but I have a rule about the length of the parties...they have to be short. I am not a wallower. The constant "woe is me" is not my thing and it's not something I want to teach my children. When Lazarus died Jesus wept, but He didn't sit and wallow. Granted He had the skills to bring Lazarus back to life and I don't have those skills, but I still look to His example. It's okay to be sad and to cry. I've certainly done that, but God has given me so many gifts (Micah, Grayson, Asher, Skyler, Keller, fabulous friends and family to mention a few) and I don't want to forget to be thankful for all of my blessings. If I decide to wallow in my grief to let it over shadow all of my joy it will start to kill the joy of the people I love the most. I don't want my boys to grow up under the cloud of woe. So I pray a lot for God to scoop me up and carry me through and He has. All I have to do is keep my focus on Him. Sounds so easy right!?! Ha, wish it was! Thankfully, He is patient with me and doesn't hold it against me when I forget and pull out my tiara for a little pity party (I had one during our MRSA scare). Instead, He stands by waiting for me to finish and turn back to Him. I imagine Him looking at me the way I looked at my boys when they were toddlers throwing their little tantrums waiting for them to finish so we could move on to bigger and better things. I just know He has so many wonderful things in store for me, for all of us. So I will continue to count my blessings, trust in Him, and try my best to follow His advice to guard against pity parties.

Thanks again for all the prayers, meals, & so much more! So many blessings...thank you, thank you!

Lots of Love,

Shelly

Daddy's favorite pic of the day.

Feeding Progress

One of the lactation nurses came in today to check on how I was doing and to talk about introducing him to the breast. Not to feed but more of a hello, nice to meet you, looking forward to working with you in the future, kind of thing. I had been told to look forward to this around 34 weeks but she thought it would be a good idea to just give it a try this week since he has been sucking away on nothing, his hands, and when he can get a nurse to take pity on him a pacifier. The problem preemies have is that they don't have the ability to suck, swallow, and breathe. Like most preemie's Kell desats a little when he gets too carried away with sucking so he needs to work on this skill. The introduction went better than I expected. He not only said hey, but he got up-close and personal right away. B & Kell got along famously and are looking forward to their next meeting possibly tomorrow. This working relationship is going to take a lot of time to build  up to something productive but it's exciting to know that it has started.

He's been working so hard to prep for breast feeding over the past week or two (ugh mush brain in the way once again) by taking his feeding schedule from continuous, to a feeding over the course of two hours, to to a feeding over the course of an hour every three hours, down to 45 minutes. His little belly is still getting used to getting full and he's not really comfortable with that feeling yet. He usually cries a little once his tummy starts to fill up and a full belly pushes up on his little lungs making him work harder to breathe so he desats a little during feedings. It's all part of the preemie learning curve. Overall, his feedings are doing their job. Keller is now just 4 grams shy of 3 lbs. 10 oz. and I can't believe how quickly he is growing!

Pray for Kell as he continues on his feeding journey.

Lots of Love,
Shelly

No More Drama!

On Sunday post the blog post we found out that Keller has a groin hernia and there was a possibility that he had MRSA. Awesome...I found my breaking point. Until they had the test results back, Kell was going to be put into isolation which means that the nurses were going to suit up in a sterile gown and gloves upon entering his room. We would not be allowed to go to public areas of the NICU which included the nourishment room where I get my ice water through out the day and would only be permitted to go straight to Kell's room and then straight home, no dilly dallying for us.

Upon our arrival on Monday a big chest of drawers filled with special gowns was outside of Kell's door that was decorated with a bright orange hazard and red STOP signs. Micah and I felt dirty and itchy as we sat in Kell's now sad little room. It was awful. With everything we have been through in the past 6 weeks this was the straw that was breaking my back. I tried so hard to keep my spirits up and focus in on God, but I struggled. I wanted to grab Kell and crawl into a dark little hole and cry. My poor baby, my poor self, blah, blah, blah....I was totally in the bitter barn and I hated it but I couldn't seem to get myself out. I prayed but they were angry prayers. Praise God that he didn't hold those against me because when I arrived at the NICU today I was greeted by a blank door & hallway.

Unfortunately, Kell has a staph infection but it's NOT MRSA and his hernia is "soft" (they can easily push it up from his groin back into his abdomen.) They will continue to monitor it but the hope is that it remains soft and it can wait until after he is discharged to be repaired surgically. So even with all the drama the past couple days we can breathe a sign of relief! Keller is still on track for now to come home close to his due date (April 17th), but I'm not really focusing on that. Instead, my focus is on our daily cuddles, Kell's progress day by day, moment to moment.

Keep praying for my sweet little guy! He's 32 weeks gestationally today...wahoo!

Lots of Love,
Shelly

6 Weeks

Our sweet boy is 6 weeks old and is doing pretty well. On Thursday the Dr. happily pronounced Keller's team meeting a boring one. Kell is doing well on his hi flow nasal cannula, he's handling his feeds well (up to 28 extra calories per feeding, off continual feeds, now gets 30 mls over the course of an hour every 3 hrs), he's gaining weight ( 3lbs. 5 oz.), and had his first visit from the ophthalmologist. I was actually here for Keller's first eye appointment on Wednesday. The ophthalmologist was very nice and explained that Keller is at risk for having retinopathy of prematurity (ROP) which is where the development of the retina is disturbed. He will be back to check the growth of the blood vessels that are supposed to grow in the retina every two weeks. Preemies can have abnormal blood vessel growth which can cause scarring and damage to the retina which can worse case scenario cause detachment of the retina and blindness. After Keller's eye check up the ophthalmologist said that so far there wasn't any sign of ROP so far and we are praying that he won't develop it.

 

On Wednesday I had my 6 week check up with Dr. Walker, he commented on how he couldn't believe it had already been 6 weeks. I laughed and said that it felt like a lifetime ago that I had the twins instead of mere weeks. My sense of time is all messed up. My life is now divided into mini segments that all feel like lifetimes of their own. My life pre-pregnancy as a full time working mommy with two crazy, fun little boys; my life pregnant with gasp...twins!; my life as a patient at Evergreen praying to hold off on delivery as long as possible; my life in the OR delivering two micro-preemies at 25 weeks & 2 days; my life as mother of four with micro-preemie twins in the NICU; my life mother of ? (3 earthly & 1 heavenly? or still 4 or 3 or ?) with one micro-preemie in the NICU. I wonder if my sense of time will return one day or if this period in my life will always be chopped up...something else to add to the wait and see list.





Keller's First Bath

I got to give Keller his first bath on Thursday. It was terrifyingly awesome! When his bath was planned I had envisioned the nurse giving the bath while I took pictures. I never dreamed that I would be the bather, but I was handed one naked little Keller wrapped in a warm blanket ready to go. My heart was pumping out of my chest, but the nurse just kept encouraging me and we made it through!  I had to gently rock Kell down into the little tub until his bottom was on the floor of the tub. I then opened his blanket and washed him. Upon turning him over to wash his backside I realized that he now is the proud owner of two real butt cheeks! No longer does his have the sad little flat thing, he's on his way to a nice little booty! Kell enjoyed his bath and was making the cutest ooh face throughout the whole thing. After the bath the nurse dried him off, diapered him, and then handed him back to me for some mama cuddle time. I am excited for Micah to share this experience with us next time.

 

Daddy's First Hold

 

Micah held Kell for the first time yesterday. I loved seeing the two of them together! Keller cuddled with Micah for 3 hours and spent quite a while just gazing up at his Daddy with such love in his little eyes. It was incredibly healing for me just seeing the two of them together. The experience was a mixed bag for Micah. Hard to be holding Kell knowing he couldn't hold Sky, but also nice to be able to bond with his sweet little guy. They had a fabulous reunion today for about an hour and it was much easier for Micah to hold him today. I think every time it will get easier and easier.

 

Gray and Ash are overall doing pretty well. Gray has his moments (like the rest of us) where he's sad and cries, but thankfully for the most part he's a regular resilient kid. Each night at dinner we get the run down on his day at school complete with the number of times he gets to see Mrs. Piper (his teacher from last year) to say hi or get a hug. Hearing him talk about how he looks forward to seeing her reminds me of why I became a teacher myself. Teachers have such an incredible impact on kids and its so amazing to watch those relationships as a parent. All of his friends have been great too. Micah and I so greatly appreciate the conversations that must have gone on at home to help the other kids be prepared to see Grayson for the first time and how to relate to him. He feels like his regular self with them and that's exactly what he wanted.

 

Asher is his fabulous crazy little self. He loves his new school, but often asks when he can go visit Kathy's to see his friends. His preschool teacher reported that he is very social and has adjusted well. He's really in to telling stories to anyone who will listen. They are crazy stories about a sandwich eating T-Rex or alien visits. He usually ends then with, "That's my story. What's your story?" this is his way of asking about your day and not an imaginary story like his. This is also very confusing time for Ash. He asks me several times a day if I remember when mommy and daddy were holding baby Skyler and crying. He also is curious where the other baby went when we enter Keller's room each day. He holds two of his little fingers up and tells me that we're supposed to have two babies. I remind him that Sky is up in Heaven with Jesus. Sometimes he accepts this and then he moves on to what snacks he wants out of the mini fridge in Kell's room other times he asks if Sky is really up in Heaven with Jesus or if he still in the other room under the blanket. Such heartbreaking things to talk about with your four year old.

         

 

Micah and I are making our way through this journey one step at a time. We have our moments...good ones and not so good ones. Our hearts feel like there is a Sky sized hole in them and we're not sure how that hole will heal. It's nice to know that God's got it. He has all of it and is carrying us through.

 

Thanks so much for all of your love and support we greatly appreciate it!

 

Lots of Love,

Shelly