2 YEARS OLD...

Dexter is 2!  I can't believe I have a 2 year old.  Life is hectic with him.  In a good way though.  But, I'm learning that 2 year olds are driven by emotion instead of logic.  So even though he may get quite a few time outs a day (he has somehow learned how to hit), they last like 30 seconds and always end in hugs until he is calm and happy again.  He repeats so many things that we say.  I think my favorite word he says now, is "hello!"  When he says it, he sounds like a high-pitched Scooby Doo!  :)

His 2 year party was a success.  I was freaking out about the cake.  I can NOT bake cakes/frost them for the life of me.  So, I had my sister-in-law make his cake, and she did fabulous.  (Thank you Augusta!)  His party was so easy and just really chill.  We had it at the farm.  All we did was Root-beer floats, cake, and watermelon.  The kids were able to play, Dex opened his gifts, and we all had a great time!

Here are some pictures!

My SIL even made him his own smash cake.  That was the nicest ever!!! 

The AMAZING cake!

He was so excited when we sang him Happy Birthday and he had his own cake!

Dex would climb up the ladder and go down the slide all by himself.  He LOVED it.

I hope he never out grows his baby face.

Lola was a party pooper and was sleeping, so she wasn't in this picture!

Dex sitting on his potty we got him for his birthday.  

He is a true boy right there.  Reading about cars on the toilet!

Dex and my MIL...she looks too young to be a Grandma!

Dexter's cousin Nash...isn't he so handsome?!

NICU WEEKS 12 & 13...

JUNE 12th-25th (Lola's Surgery):

Mom getting in all the snuggles she can before surgery!

One of the last days Lola had a nasal cannula

I have been pretty good at keeping a journal day by day.  However, the last 2 weeks of our NICU were incredibly stressful and extremely overwhelming.  The results of Lola's CT scan showed an eventration of her diaphragm.  Leading up to her surgery a few days prior, the right side of her lung caved in a bit where the liver was pushing up on it.  She also needed to be turned up on oxygen.  So, we scheduled surgery for Friday, June 17th.  The day of the surgery, I felt surprisingly calm, yet I still had an anxious feeling.  I didn't want to send my 8lb baby girl back to be put under an anesthetic and be operated on!

Right before heading back to surgery

To make matters worse, the anesthesiologist was the same one who put Dex under to clip his tongue due to a tongue tie 2 years ago.  When he clipped Dexters tongue, he was very concerned that Dex wouldn't handle the surgery well because Dex was a late pre-term infant.  And he was fresh out of residency too!  He was a little insecure then.

I was extremely worried when I saw that he was going to put Lola under because back then he wasn't as confident.  He is a much better anesthesiologist now and his composure about this surgery, was completely different.  But, I was still anxious as there were some risk factors for Lola to be put under  First, she was born prematurely!  Second, she has a small VSD hole and if any bubbles were to get in the IV drip, she could be at risk for a stroke.

Derek and I still felt calm that she should get the surgery.  Leaving her in her crib was torture.  Luckily, one of our favorite nurses was able to be in the surgery with Lola Lu.  I always refer to the nurses as "NICU Moms" because they helped raise my daughter those first 3 months.  Anyways, having a NICU mom in surgery with her, made me feel better.  But then, waiting for her to get out of surgery was stressful...we tried to keep distracted, but it wasn't easy as we kept wondering, "Will everything go okay?  Will the surgeon be able to repair Lola's diaphragm?  Will the anesthesiologist prevent drips from going in the IV?  How is Dex doing at home with my mom?"  I'm such a worrier!  I shouldn't have stressed so much about this because babies who are 2 pounds are getting surgeries.  Our situation could have been much worse.  We were blessed Lola was able to stay in the NICU, get to the weight she was for her surgery, and for her recovery to go as well as it did.

The surgery went well, but it was emotionally hard for us to see Lola after the surgery.  She was swollen and edemic from the fluids, she had a breathing tube again, a chest tube for drainage, and just was totally lethargic.  With adults, they give us something after surgery to help us wake up.  With babies, they let them wake up on their own.

Day 1 of post surgery

24 hours passed and she was still on the breathing tube.  The doctors and nurses kept it in because her lungs looked like a whiteout.  That means that her lungs were filled with fluid.  The surgeon came to see her the next day, and was a little disappointed to see she was still on the breathing tube.  One of the nurse practitioners, felt that her chest tube was clogged and thought it should be taken out.  She thought that was the cause of the whiteout.  So, they took it out and lots of fluid came rushing out.  That fixed the whiteout!

Day 2 post surgery

48 hours after surgery, Lola woke up even more and pulled out her own breathing tube!  Ever since she pulled it out, she has been sitting high with her oxygen.  We left the nasal cannula behind in the NICU.  I prayed that she wouldn't come home on oxygen and even though I didn't want her to get surgery, my prayers were answered in a very humbling way according to how God saw fit to answer them.

Right after pulling out her breathing tube.

Every day until the day she left the NICU, got better and better.  She started working up on full feeds again and she gained her strength and stamina back.  She is my hero to go through all this at such a young age.  How incredible.

So, we had the surgery which was stressful but then 3 days before Lola came home, our landlord said he didn't think we would be a good fit for our new downstairs neighbor and wanted us to move.  We had been month to month.  Our landlord wanted us to either move or come August 1, sign a one year contract.  He also said that we asked him to do too much.  Although the only things we asked him to do, were to turn on our swamp cooler and to fix a drip in the tub faucet.  The tub would drip and this nasty mold would grow in the bottom.  And then, these little bugs were creeping into the bathroom.  I was constantly cleaning it!  I did not want to bring my premature baby who has a sensitive immune system home to this!

We didn't want to pay rent for a year because we are in a situation where we can get in our first home! So, we made a last minute decision to pack up our whole apartment, put the majority into storage and move into my parents house so we can save faster for a down payment!  We moved and got settled into my parents house in a matter of 3 days!  I was so grateful that my cousin and his wife came to help us move.  Derek's coworkers came to help too.  We couldn't have done it without their help.  We were exhausted but we have felt good about this move.  Hopefully soon, we can buy a house!

On June 25, 2016, we were able to bring our sweet baby home!  It has been so surreal to be a family of 4 officially.  Family is everything and I have turned into this mama bear who never wants her children to be away from her.  This has been a very emotional draining trial but we have learned so much.  There is so much to be grateful for.

Leaving the NICU.  She made a grand entrance into the world and she had to make grand exit leaving the NICU.  She was too upset to get any pictures with the nurses!

NICU WEEKS 9-11...

MAY 25th to JUNE 12th:

These last few weeks have been whirlwind.  Lola would go a few days without having a bradycardia/apnea spell and then randomly she would have one.  We addressed so many issues we thought were contributing to the spells; constipation, reflux, etc.  One of the doctors ordered an x-ray for Lola.  In the x-ray it showed that the lower part of her right lung is partially collapsed and her lungs look wet.  At the time, the doctors didn't know if this was happening because she was starting to get an infection, so an antibiotic was started and x-rays were ordered for everyday to see if there would be an improvement.

The next day after the antibiotics were started, another x-ray was taken and it showed what is called an evantration of the diaphragm.  Lola was most likely born with this and due to being on a ventilator and high flow oxygen, her right lung stayed open.  An evantration is when the diaphragm is weak and stretched out, so her liver is pushing against the diaphragm, putting pressure on the lower part of her right lung.  However when moving to the regular cannula, her lung couldn't stay open all the way.  This is probably the reason for the bradycardia and the apnea spells.  It is twice as much work for her to breathe.

There is a surgery to fix this, we have a CT scan and it looks a little more severe than we thought it was, we are waiting for the attending surgeon from Primary Children's Hospital to get back from vacation so we can figure out what we will happen.  The surgery would be a plication of her diaphragm.  Either they will sew the weak spot together or they will fold the diaphragm in half to make a thicker membrane.  There is a chance that she would need to get the surgery again, if there is no muscle in the diaphragm.  We won't know that until a few years after the surgery after it really heals and if muscle will grow around the stitch.

We don't know if Lola will need surgery now or later.  We do know that they like to do this surgery within the first 6 months of life because there is more success.  We also know that the surgery would be at Primary Children's and the recover period is anywhere from one to four weeks depending on how she does and if they fix her diaphragm with a scope or go through the abdomen.

On May 30th, Lola hit her 2 month mark.  She was not happy about it.

On June 10th, Lola hit 40 weeks.  She is officially a full term baby.

On June 11th, Lola had her first adventure outside the NICU, she got a CT scan!

NICU WEEK 8...

WEDNESDAY, MAY 18th to TUESDAY, MAY 24th:


This NICU experience is something else I tell you.  This week has been so full of ups and downs.  If you remember last weekend (May 13th and 14th), Lola had some very severe bradycardia.  Her heart rate kept dropping, followed by her oxygen.  SCARY!  She would look dusky and grey.  I kept asking her nurse on Saturday, to check her NG tub...I asked her that 5 times!  Luckily, as an answer to prayer, one of her nurses the following shift realized that her feeding tube was too short.  This was causing her to aspirate.

I was pretty frustrated with the nurse who did this, as we had come so far that last week to weaning the oxygen down, she was taking the majority of her bottles, etc.  I'm almost positive that we could have been home this week if that setback didn't occur.  There were so many factors brought into her situation of why her heart rate kept dropping.  They ran so many tests. So the OT started mixing bananas into her bottles to help thicken the milk.  She thought that maybe she was choking because the milk wasn't thick enough...but Lola was doing fine on bottles without bananas before the feeding tube disaster!

My mom gut told me this was a bad idea...and it was.  So this week, Lola started having more bradycardia.  One of the doctors wanted to put her back on caffeine.  Luckily, I intervened before they started the order!  I noticed that her bradycardia before was because of the feeding tube (a feeding related issue).  There are all sorts of words used to describe mom...taxi driver, teacher, household cleaner, personal chef, doctor, etc.  So, I turned on my doctor brain and started piecing things together:

1.  She had been grunting a lot.
2.  She started bananas.
3.  She hadn't passed a bowel movement in a day....normally she has 3!  (Sorry for the TMI, but pooping is a thing to praise once you become a mother!)

LOLA WAS CONSTIPATED!!!!  This is a terrible thing for children and their parents to face.  Constipation means upset stomach, refusing to eat, having a hard time breathing because there is literally no room!

So, after many firm arguments with nurses/doctors...they started her on prunes, we finally got the OT to do a bottle without bananas...Lola did well so the bananas were taken out, constant tummy massage, heat packs, and enemas were started.  Then we just waited.  The first day of doing this, Lola hadn't had a bowel movement on her own and the second day was the same.  By the third day, she has been back to her regular self.

Since she hasn't been grunting as much, she is able to get the adequate rest that she needs to grow and get stronger.  She is now on home oxygen and has not had bradycardia for 2 almost 3 days now.  Mom inspiration is always right and THANK YOU to the nurses who pushed to get orders for prunes and enemas for me since I was not able to be there all the time.  She is so much happier now.  She is almost taking all her feedings orally.  The phrase, "we are on the tail end" has never ringed better than this last week.  Hopefully we don't have to be here too much longer.

NICU WEEK 7...

WEDNESDAY, MAY 11th to FRIDAY, MAY 13th:
Lola has been doing.  They weaned her oxygen so she is getting an amount that she could go home on.  She is taking bottles really well.  All the nurses and the Occupational Therapists are shocked that she has taken a liking to feedings so early and so fast.  Breastfeeding is harder for Lola so she usually has 1 good breastfeeding a day.  We are hoping that as she gets older, her suck will become more efficient, stronger, and she will transfer milk better.  Michelle has a great supply of milk, it would be nice!  Lola also weighs 6 pounds 7 ounces!

SATURDAY, MAY 14th:
Lola had a rough day today.  She was on a trace of oxygen, but that might have been a little too soon to wean her down to that.  Her heart rate and oxygen kept dripping and she wouldn't climb back up on her own.  It is scary holding her, but I think she needed me to skin to skin with her, and she goes dusky.  The nurses have taught us what to do in these situations, but it really freaks me out.  I spent the whole day at the hospital yesterday because I just felt like she needed me there, she needed to hear my voice while sleeping, and we needed the skin to skin.  She didn't cue for her feedings because she was so tired and fussy.  Later in the evening, Dr. Gerday was a little more aggressive and pulled out a pea sized boogie, which could have been why she was having a hard time breathing.  She had a couple more dips in oxygen and her heart rate throughout the night though.

SUNDAY, MAY 15th:
Lola had another dip in oxygen/heart rate at 5am this morning.  They increased her oxygen to 1 liter.  She seems to be doing better on that.  I'm hoping they don't need to go back to high flow because then she won't be able to oral feedings, which she is cueing for.

MONDAY, MAY 16th to TUESDAY, MAY 17th:
Lola is doing much better than Saturday. One of her nurses, Debbie, figured out why her stats kept dropping. Her GIT was not in far enough in her stomach. She is much happier now. That dang tube is the worst. Once she can take all of her feedings orally, the tube can come out. 

Because of her rough day on Saturday and Sunday, she has been so sleepy she hasn't woken up for her feedings much. But today, Wednesday she finally woke up and breastfed. She is acting much more herself today. She weighs 6 pounds 14 ounces today!

If she doesn't start to cue by the time she is 37 weeks, they are going to start challenging her by making her feedings the minimal amount and decreasing the time so she will be forced to wake up and be more efficient at eating. She is a very content baby and extremely smart. She may just be thinking that she can rely on the oxygen and the feeding tube all the time.

NICU WEEK 6...

WEDNESDAY, MAY 4th:
On Wednesday Lola had her eyes dilated and checked. They are still immature but right on track for a preemies eyes. They are still developing. She didn't gain much breastfeeding but she did latch, which is important. Derek also gave Lola her first bottle tonight and she took 23 ml, which is half her feeding. She is now on a 1/2 liter of oxygen too.

THURSDAY, MAY 5th:

On Thursday, Lola had one successful breastfeeding. She gained 8 grams in a feeding. Her skin is now getting some chunk. Her cheeks are filling out even more. The nurses say she has Angelina Jolie lips because they are so big!

FRIDAY, MAY 6th:
No obvious changes, Lola had a pretty sleepy day. I went with my mom instincts and just let her sleep the whole day. In hopes that tomorrow she would breastfeed better.

SATURDAY, MAY 7th:
They switched Lola to 1 liter of oxygen. She was so sleepy, that we decided to let her not work so hard and sleep. I didn't get in with Lola for her 11am cares, instead, I let her sleep. That evening, she had 19 ml from me, took the majority of the rest from her bottle, and then was gavaged the rest.

SUNDAY, MAY 8th:
Lola took another 12 mils from me at 2pm. She weighs 5 lbs and 14 oz. She is really starting to fill out. She seemed really tired today, so I decided to just have her do one feeding and then sleep.

Dexter also got meet Lola through the window for the first time tonight. He was throwing a tantrum right before he saw her. Right when I brought Lola to the window, he calmed down, started pointing at her and just staring. He LOVES his baby sister. I'm a little upset that the rule is for siblings to be above the age of 2 and have a complete vaccination record. Dexter is up to date of vaccines but he isn't 2 just quite yet. You would think that on Mothers Day, there would be an exception.

MONDAY, MAY 9th:
She had one good feeding from me. She gained 24 milliliters. She is 5 pounds 15.5 ounces. She also took 2 back to back bottles. The first bottle, she took 30 milliliters and the second she took 5 mils and then fell asleep.

TUESDAY, MAY 10th:
This morning's feed didn't go to well. She was tired! The evening feed went great though. She gained 23 milliliters from me and was gavaged the rest. They decreased her feeding time through her tube to 30 minutes which will make her hungrier when I come to breastfeed her. She weighs 6 pounds 2 ounces now! They will probably wean her off of caffeine and start decreasing her oxygen more in the next few days.

NICU WEEK 5...

WEDNESDAY, APRIL 27th:
Lola has broke the 5 pound mark! This is big in the preemie world. By the time of her due date, she may be well over 8 pounds. Lola is now on a low flow cannula. We keep hoping one day it will click for her to breathe. We are terrified to bring her home on an oxygen tube as Dexter will constantly rip it out of her nose.

Today was Lola's first time doing non nutritive breastfeeding. I pumped before hand so I wouldn't drown Lola with my oversupply of milk. She surprised the lactation nurse and latched her first time and started sucking. She did this for maybe 15 minutes and then fell asleep as milk went in her feeding tube.  Breastfeeding for a preemie is comparable to us running a 5k. It wipes them out and is hard work.

THURSDAY, APRIL 28th:
Tonight, we did a test weight with Lola to see if she gained any breastfeeding. She sucked just as well as last night, so we decided to see how much she was transferring. I had completely pumped again, so I wasn't expecting her to gain anything.

The Occupational Therapist came to work with us to see the miracle of a 34 week baby breastfeeding/latch on. (It is uncommon for babies this early to want to breastfeed.) Since Lola did so well with sucking this morning, she latched but did not suck well for the OT. Lola didn't gain any weight this time.

FRIDAY, APRIL 29th:
We did another round of non nutritive breastfeeding. Not much change, she sucked well though again. We will keep practicing!

SATURDAY, APRIL 30th:
Instead of completely pumping this time, I just pumped for a few minutes. Lola latched again and she actually ate! We did a test weight again and she gained 9 grams (equivalent to 9ml). She fell asleep and then took the rest of her feeding through her feeding tube.

Now, I need to be at the hospital two times a day to breastfeed Lola. I will go I'm at 11am and 5pm. She is, what one of the nurses referred to, as a "champion sucker"! Because she gained weight, we will now start nutritive breastfeeding.

Lola is still on oxygen. It is a lot hard work to suck and swallow, so the oxygen helps her to not work so hard so she can rest and sleep. Sleeping is vital to the growth and development of their brain.

MONDAY MAY 2nd - TUESDAY MAY 3rd:
Lola is now 5 pounds 7 ounces. Because she did so well her first time nutritive breastfeeding, she is now having a harder time breastfeeding. Breastfeeding for a preemie is the equivalent of a 5k for us, so it wears them out! It can make them a tired for a days. However, we still breastfeed and the goal is to make it a positive impact for Lola.

NICU WEEK 4...

    

WEDNESDAY, APRIL 20th  -->  SUNDAY, APRIL 24th:

I (Derek), haven't contributed to this blog much. Michelle has been posting all of the updates so I will help her out this week. The days tend to blend together so I will give a 5 day update.

Lola just keeps pressing forward. She is down to 2 liters of oxygen now. Hopefully she will be able to get off of the high flow oxygen soon. Today they moved her feeding tube from her mouth to her nose. I'm sure she doesn't enjoy having the tube running through her nose but she likes it a lot more than having it run through her mouth. She loves to suck on her binky and it is much easier to do with the tube out of her mouth. Little Lola now weighs 4 pounds 12.5 ounces! She has passed her birth weight by over a pound!

Little Lola is receiving lots of love from her grandparents. Michelle's dad got to hold Lola on Friday. Her grandmas visit her quite often. Also, Derek's dad helped Derek give her a blessing on Saturday. She is lucky to have such wonderful grandparents. She is going to be a spoiled little granddaughter.

MONDAY, APRIL 25th --> TUESDAY, APRIL 26th:
Lola broke the 5 pound mark!! She weighs 5 pounds 1-1/2 ounces. She is 27 days old and her adjusted gestational age is 33 weeks 4 days.

She is still on the high flow oxygen but she keeps getting better. She is not having as many swings in her oxygen. Every once in a while when she is eating she will have a dip in her oxygen. Usually she will get it back up on her own but sometimes we have to sit her up and rub her back or her sternum to help remind her that she needs to breath.

Tomorrow Michelle is going to start trying non-nutrition feedings with Lola. Its pretty much like breastfeeding practice for Lola. Michelle will pump and then let Lola try breastfeeding while she is getting milk from the feeding tube. We are excited to see how she does. After a couple days of the non-nutrition feedings they will try normal breastfeeding. Fingers crossed that she does well with it.

I want to give a specific rockstar shoutout to Michelle. She is amazing. Its not easy having a NICU baby, especially with a crazy 19 month old nicknamed Dex the Destroyer. She has done so well with everything and I am so grateful for her. Day after day she just does what needs to be done. Some days are harder than others but she keeps pushing forward. She does everything she possibly can to make sure that her kids are safe and happy. She is such a good mother to Dexter and Lola.

Also, in her limited free time she has made blankets and burp cloths for Lola.

And she has built up quite the supply of breastmilk for Lola.

Thank you Michelle, Love you