Day 12

So he we are almost 2 weeks in, and we are getting restless. All we are waiting for at this point is for Eli to decide he wants to eat by mouth. It is so fruatrating. Last Saturday he took 4 full bottles. We were so excited because it was his first day of trying, so we got our hopes up that he would be flying out the door.

Unfortunately, Eli was still losing weight, so they started fortifying my breast milk on Sunday. This means simply that they are adding calories to my milk to help him gain weight. In doing this, he began to stay full longer. In the nicu, babies are fed every 3 hours. In orser to come home, they have to take all 8 daily bottles for at least 2 days to come home.

After Eli's one successful day, he went until Wedensday night taking nothing by mouth. The increased calories made it so he was no longer hungry at feeding time. Some feeds he would sleep, others he wouls be wide awake and happy...nevwr was he hungry! You can't really blame the poor guy for not wanting to eat!

He finally hit his birth weight again, and last night they started reducing calories again. He finally starting taking a bottle again. He has not yet finished one, but I am hopeful that we are getting closer. Occupational therapy has been working with him too, so they are working on finding something that works for him.

We were told early in the week that a Christmas homecoming may be pushing it, but that will continue to be our goal.

On the home front, LJ and Kaycie have both been sick. Fevers over 104, and just blah. Today everyone seems to be over the worst. We are struggling though. Poor LJ is over this. His routine is off. His mommy and daddy are not there att he same time, and he knows Eli is here but doesn't quite understand why he hasn't seen him yet. Thank you for all of the offers to watch the kids for a few hours but besides some visits with my parents, we are keeping them close right now. LJ is a sensitive soul anyway, and this is just wearing on him. Kaycie doesn't really know what is going on besides things are different right now, so she has also been extra clingy. All of this makes mama on the verge of tears all day every day. No matyer where I am I feel like I need to be somewhere else.

Thank you for all of the prayers. Please continue to pray that we can all be together again soon and that we come out of this stronger than before.

And then there were 5!

So here we are again! I am sitting here in the Northside NICU while Eli quietly sleeps. His monitors are for the most part silent at this point. He was moved to the step down unit Thursday night, which means he is stable and at this point pretty much what they call a feeder/grower. He has a few things to accomplish before coming home. The biggest thing standing in our way is taking 8 feeding by mouth.

I will backtrack a bit...last weekend I woke up at about 3 am to my water breaking. Once again, I was just getting confident that we may get to 37 weeks. I was not having contractions but since my water was broken my doc wanted me in right away. Baby boy decided to play hard ball...after breaking my water, he floated back up into my ribs. I spent all day making little progress, but long story short, after major pitocin, an epidural that sporadically worked, and 26 hours, Elijah Christian made it into my arms...briefly. He was 5 lb 13 oz and 19.25 inches. They took him to the nicu since he was 35+1 (to the day the same gestation as Kaycie). They immediately admitted him with respiratory failure and respiratory distress syndrome. Initially he was getting more respiratory support than LJ, who was born 6 weeks earlier. His lungs were just not ready, and LJ had the steroids to speed up his lung development, whereas Eli did not. It really hit when the nurse told me that if he needed an ounce more of support, they would have had to put him on a ventilator.

Eli was born Sunday and I was released Tuesday. LJ and Kaycie had a blast with grandma and grandpa. I think it has been harder on Matt and I than the kids. Matt has taken the rest of the year off. He has been playing Mr. Mom while I am here...today we are switching out midday. With LJ we had no one else to worry about while he was in the nicu. This time, my heart breaks every morning when I leave LJ and Kaycie and every afternoon when I leave Eli. That said, Matt is taking over this afternoon and I have a Candy Land date tonight with LJ.

Luckily, Eli's lungs have matured pretty quickly. He was taken off oxygen after 4 days. Now we are working on feeding. He has been trying to nurse for 2 days but still figuring it out. About an hour ago, he took his first complete bottle though, so we are making progress!

It is hard to say how long he will be here. Initially we were told 2 weeks was a good guestimate. It has been 6 days, so we will see. At some point, the eating will just click and we will get on out of here.

A quick note about boys...white boys specifically. Kaycie was born at 35+1 with no real "preemie" related issues. Eli, born at the exact same gestation, really struggled at first. This is a classic case of wimpy white boy syndrome. I think I offended some when I used the phrase earlier in the week, but it is a concept accepted across the board by nicu doctors and nurses. They remind us often that white boys struggle more than any other race/gender babies. Who knows why, but when we were here with LJ, it became pretty apparent pretty fast that this is true. That said, obviously it isn't a long term issue :)

A few things we have learned about Eli so far...when they found out about Kaycie's hearing loss, they wanted to go ahead and do a full ABR on him. This is the test the Kaycie had to be sedated for and we only got scheduled after 2 months of appointments. HE PASSED WITH FLYING COLORS! Since we have not done any of the genetic testing for Kaycie, we were unsure how that would go. We also learned to day that his thyroid is underactive. They are retesting before treating, but given that Matt and I have no thyroid anymore, we have always known at least one of the kids will likely have issues. Last week Kaycie's neurologist also referred her to have hers tested because her soft spot has not closed. Who would have known that was a sign of thyroid disease in babies. She will also get tested next week. Heck, at this point, we may just get LJ tested too!

So here we are. I don't want to get my hopes up, so I just keep tellong myself that I will be happy if our whole family can be home together by Christmas. I think that will be the final piece to making our family feel complete. In the meantime, we will make it through this chaos together!

 I will add more pictures later. I am on my phone since I haven't had a chance to sit down with the computer at home ans upload pics.

Atlanta Botanical Gardens

The weekend before Halloween we went with Grandma and Grandpa Evensen to the Atlanta Botanical Gardens for their fall festival. It was fun. The kids got to dress up, and they had activities for the kids in addition to the scarecrow exhibit that was happening at the time.

Pumpkin Patch!

Another annual tradition is going to pick out pumpkins at the local pumpkin patch. In the past, LJ painted his pumpkin, but this year, his Daddy and he carved it instead...he loved it. I was kind of surprised because he does not like it when his hands are dirty, so we figured he wouldn't like pumpkin guts...we were very wrong!

Touch-a-Truck

LJ loves cars and trucks...his Hot Wheel collection is growing rapidly, and he can name many different cars on the road. This makes Touch-a-Truck one of LJ's favorite fall events. This year it was really cold, but it didn't phase LJ at all!

September Apple Picking!

 

 

This year we went in September instead of October for our 3rd annual apple picking adventure. This year, Kristen and the boys were in town, so we all got to go. I made a lot of apple sauce...and it didn't last long!

 

 

 

 

 

Kaycie and Baby Update

Kaycie is 14 months old tomorrow! She is full of personality and I am still finding it difficult to believe that she is soon to be a big sister!

 

Kaycie continues to do well. I think we have sort of hit a lull in her progress, which is normal for any toddler, but I have to remind myself that she will get there. She is going through another phase of not wanting to wear her aides, and where her pilot caps used to work, she has now figured out how to get around those too. Some days I have to remind myself that I can't just let her win, so at the end of the day I am usually just as ready as she is to put them away. I know this phase too will pass but in the meantime, she is giving me a run for my money!

 

Kaycie will repeat many words, she is finally waving, and she has great eye contact. She does not use many words independently yet, but we continue to work. She had her 6 month evaluation last week and she is starting to fall slightly further behind in her milestones but they aren't hyper concerned yet. We just have to continue to be diligent about pushing her to talk.

 

As far as her motor progress, she can get where she wants to...she is cruising well and is up and down and loves to be on the move. She has primarily been working on balance and that progress seems to be slower. She so badly wants to take off, but she is just not centered enough. She has made huge progress with her strength though, so that should eventually help with her balance. I know it sounds silly but Kaycie has never been a "hip baby" (she was never stable enough to put her on your hip amd carry her). Just recently, I have been able to hold her that way for short periods without her tipping....how's that for small goals seeming like huge accomplishments!

 

Kaycie is just a spitfire. She doesn't back down to LJ, but she also knows that if she wants something she can scream. If she is not in the mood to play, she will scream if he gets anywhere near her. She has no fear. We have to watch her closely because she takes chances much more than LJ did at that age. She has no problems making her desires known. She sort of reminds me of...me. We may be in trouble!

 

Even though I talk about the arguing between LJ and Kaycie, really most of the time they do get along. No one can make Kaycie belly laugh like LJ, and he watches out for her. She wants to do whatever LJ is doing. I don't think any siblings have made it through life without a little sibling rivalry!

 

Now for a quick pregnancy update...I am 28 weeks and all is going well still! I haven't said a whole lot about it because it has been UNEVENTFUL! I continue to have ultrasounds every 3-4 weeks. I have my last scheduled one next week at 30 weeks. I am always spoiled by getting to see my babies often. I have entered in to the phase where I am setting small goals for staying pregnant. I have officially surpassed when my water broke with LJ. Next goal...Halloween, when I will have passed my delivery gestation with LJ. Next will be 34 weeks. I am feeling hopeful again! My magic date is December 20...this is the 37 week mark, and officially full term. That date is quickly approaching!

 

Baby boy continues to measure about 2 weeks ahead, just like LJ did, so at least size is on our side. I have to say there are many days that I forget I am pregnant for awhile. With 2 little ones running around, I don't have time to sit around and think about it. I think that is good for me!

 

This week we officially became members of the minivan club. We were planning on making our Highlander work at least for awhile, but we quicly realized that putting them 3 across is close quarters (we tested it out with LJ and Kaycie). I must say I never thought I would be so excited to get a van...LJ likes it too!

LJ Turns 3!

So a little behind as usual! LJ turned 3 September 22. It is hard to believe it has been 3 years already. Every day he continues to amaze us, and I am sure we are partial, but he really has turned in to a pretty cool little kid.

 

We are in the throes of the terrible 3's...I am sure it could be much worse, but LJ has learned to argue and scream. Luckily, it isn't constant but we rarely go a day without a meltdown of some sort. Many times it revolves around Kaycie. I think he gets frustrated with her being in the way, and he will hit her. We are working on ways to teach him to handle his frustrations with words...because he has many of those.

 

Really...LJ rarely has a quiet moment. He just talks. When he is alone, in a crowd, to us, to strangers. It really doesn't matter. And like any toddler, there is no filter. He told an elderly couple at the store yesterday that he gets a new car (a hot wheel) if he poops...all we can do is smile and nod. LJ started school this year, and he absolutely loves it. It is just 2 mornings a week. He gets in the car everyday and just starts going on about his day...it is always a game to put the pieces of the puzzle together. Today he talked about the elephants and peanuts the whole way home...not sure of he went to a circus?

 

LJ's doctor was very happy with his progress at his well check. I switched doctors within the practice awhile back because of the interventions we needed with Kaycie, so this was the first time he had seen LJ. It never stops being amazing to hear that he is doing perfectly for his age....the doctor has closed the book on any lingering "preemie issues" besides his teeth. He is n the 70%ile for weight and height...never thought I would hear that about the little guy!  He is back off cow's milk too, but that isn't a preemie issue. It seems to run in the family. Happy and healthy all around! We even had a test on his immune system last week when Kaycie got hand, foot, and mouth disease and passed it on to me. I keep waiting for a sign that LJ is getting it, but so far, he has been totally fine!

 

For LJ's birthday we went to the Children's Museum in Atlanta. My sister came in town with her boys, so they came along with Grandma and Grandpa. The museum was actually pretty bad, but I think all the kids had fun! That night we celebrated with pizza and cake at home. For the time being we enjoy small family birthdays...I know once we start having bigger ones we will never go back!

 

Waiting to go in to the museum

Grocery shopping

We can never get away from the trains!

Someone else likes them too!

Kaycie had more fun than anyone I think.

She loves music.

A budding artist.

His new big boy bike! He calls it a motorcycle. We won't burst his bubble.

Blowing out candles

Cousins

 

Kaycie Turns 1!

On August 23, Kaycie turned 1! Already! It is hard for me to wrap my head around the journey of this past year. It is amazing to look back and see how much my little girl has grown and changed and started to become comfortable with her world. I has been exciting, heartbreaking, and inspiring all at once, and I cannot wait to see what Kaycie does to tackle her next year.

On Sunday at church, the "other" Andy spoke (Andy Stanley is our usual pastor; Andy Jones is on staff at Watermark.) He was wrapping up a series called, "In the Meantime". It has focused on the question of "What do we do when there is nothing we can do?" It has been an eye opening and inspiring series that I would encourage you to check out. Anyway, Andy spoke on Sunday about his "in the meantime". Listening to his story about his children brought me to tears...I think for the first time ever at church. I felt like I could have told a similar story. I spent so much time this year with a focus of fixing and problem solving and researching when I probably could have better used my energy simply thanking God for a child who has been an incredible gift without questioning if this was my fault or if we could have done something differently. She has been given to us for a reason, and now that I have been able to sit back and relax, I can see all the amazing things she has already accomplished. I would not change one thing about our story...I think we have been given some of the coolest kids ever and I cannot wait to see how their story unfolds. Here is the link to the series if interested….it is the final message that Andy Jones delivered. http://northpoint.org/messages/in-the-meantime/

If you have spent time with Kaycie, you will quickly notice that the baby she was at 6 months is a different child than who she is today. She is a spitfire. She has no clue she can't do everything her brother does, and she has the bruises to prove it. Since her balance is lacking, she uses her head to catch herself…it always has a few black and blue marks on it. She laughs, she engages with strangers, she dances...oh how she dances. We were at breakfast last week and music was playing over the speakers. She couldn't stop be-bopping...she even had a grandma waiting next to us dancing to oldies with her. She stands up to LJ when he tries to take her toys...I have no doubt who will be the one in control of this house.

For Kaycie's birthday, we went to the aquarium with Grandma and Grandpa. I think both kids enjoyed it, and the whole time we were there I kept thinking about how that trip could not have happened a few months ago...we even went to the dolphin show with lights and loud noises and survived! You will notice that sometimes Kaycie has her hat on and sometimes she doesn’t. She goes through moments of not messing with her aids and some days she just can’t leave them alone. She has been getting her molars in, and so she has been pulling at her ears a lot. I don’t think it has anything to do with her aids, but they seem to be getting in the way.

Kaycie was 20 pounds at her 12 month check-up and the doctor was super happy with the progress she is making. She also had a 12 month audiology check, and they were able to test her hearing without her aids in. She tested at the same level that she did right before she got her hearing aids, so that is good news! As of right now, we are just staying the course and enjoying life! She still goes to speech and physical therapy. She still has her deaf mentor come, but we have cut back to twice a month for now…it was all becoming a little over whelming! Kaycie likes to babble like her brother. She has words that sort of come and go because she is so focused on the physical skills that she keeps letting words go. It is normal and we aren’t worried!

As far as I go, my pregnancy has been pretty uneventful, and we love uneventful. I have stayed out of hospitals and have not had to make any after-hours calls to the doctor. That is a success around here! I started my injections again at 16 weeks, so hopefully those help again as well. I still have the joy of ultrasounds at every appointment, but they are not worrisome at all. Honestly, I have been so busy lately that I have not had time to stress or worry too much. It is probably a good thing for me!

We, and by “we” I mean Matt, has been busy tiling the floors in the bedrooms and bathrooms in the little spare time he has had lately. It is a project that we have wanted to do since we moved in, but it just now hit the top of the priority list. Mostly because the carpet had to go! We chose a wood grain tile, and I love it…eventually we will do the whole house, but it is a slow process with not having a lot of time to work on it, so after the bedrooms are finished, we will be stopping all projects until after baby. Our bed has been in the family room a few weeks while we tile and room shuffle the kids so their rooms can get done. I keep joking that I can clean the family room and bedroom twice as fast as I used too J I also told Matt I wasn’t putting our old furniture back into our room once it was finished. We really didn’t want to spend money on new furniture right now, so I have been spending my evenings learning the joys of Annie Sloan chalk paint and wax!

LJ has a birthday next weekend, so I will update again with pictures from his birthday. He started school a few weeks ago and loves it!

LJ couldn't wait to give Kaycie the card he made her...this was brithday morning.