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

NICU WEEK 3...

WEDNESDAY, APRIL 13th:
Lola has been pretty stable from the day before.  The only difference is that she is now in a normal crib.  The requirement for them to get into a new crib are if they are over 4 lbs.  Lola is now 4 lbs and 1 oz.  Her new crib inclines more, so she will hopefully have less reflux and have less "episodes."  Episodes are when she forgets to breathe.  It is a prematurity thing.  She usually forgets to breathe if she gets too relaxed or if she is having some reflux.

THURSDAY, APRIL 14th:
Lola has been doing so much better in her crib.  Since Michelle's SIL is due with a baby anytime, we thought today would be a great day to have Marie (Grandma) hold Lola since this next week could get busy.  Dereks mom will hold Lola tomorrow.  Lola now weighs 4 lbs and 1 & 1/2 oz.  The doctor started Lola on a probiotic which should help her not be so sensitive to her food and digest it easier.  Lola's stats still swing when she gets held.  She becomes so comfortable that she will forget to breathe for a little bit.  We just rub her upper back or her sternum to remind her to breathe.

There is also a correction with the holeS in her heart.  She actually has 2 holes in heart.  We thought she just had the one.  She has a PDA hole and a VSD hole.  Both holes are very tiny.  The PDA hole is in the main artery from the heart to the lungs.  This hole should close on its own around 34 weeks adjusted.  However, if it doesn't she will get doses of tylenol to help it close.  If the tylenol doesn't work, then she will get a small surgical procedure where they will place a staple and a tube in the artery.  The other hole is a VSD, which is very small as well.  This hole is between the ventricle muscles of the heart.  That hole usually closes within one to two years.

The doctors are pretty positive her holes will close since they are so small.  If her oxygen starts to decrease rapidly though, it could be related to the holes in her heart.  While the doctors aren't worried about these holes, we just want our daughter to be healthy.  We would rather not have to follow up with cardiologists frequently to keep monitoring the holes.  It is one more thing added onto the NICU experience, but this is something in God's hands.

(On the side, the picture below of her "triple chin" is much like Lola's Great Grandpa Ron Astle's chin.)

FRIDAY, APRIL15th:

Today, Dereks mom (Debbie) was able to hold Lola Lucille!  When Michelle's mom (Marie) held her, she kept making all sorts of faces.  She would smile and then grunt.  Michelle kept holding the phone out to try to snap a picture of her smiling, but was always late.  Derek was able to get the perfect picture of her smiling in Debbie's arms though.  He must have faster reflexes than Michelle.  I guess piano playing did not pay off in the "who can take a picture faster department".  

Lola has still been doing well.  She keeps swinging with her oxygen.  She will get so relaxed she forgets to breath.  Michelle did skin on skin with Lola tonight which was wonderful.  Lola kept nuzzling her face into Michelle's chest and trying to suck.  This was a first.  She had done this to Derek before, but never to Michelle until now.  

SATURDAY, APRIL 16th:

We got a call from Dr. Gerday.  (Dr. Gerday is from France and has the most beautiful accent!)  Lola receives caffeine on a daily basis.  The caffeine helps remind her to breathe, acting as a stimulant to her brain.  the nurses and doctors decreased her caffeine, but today Dr. Gerday is going to increase it to see if that will help her oxygen when she gets into a deep sleep.  

With these preemies, it is all trial and error.  Doctors don't want to continue to give the babies medication if they don't need it.  So there is a lot of decreasing and increasing to keep them stable.  And then in a few days they will try to decrease medication again to see if the babies can keep their stats stable on a lower dose.  Sometimes the lower doses will work and sometimes the babies aren't ready for those lower doses yet.  So, that quote of taking a few steps and then one step forward, pertains to these babies very well in the NICU.

SUNDAY, APRIL 17th:

Lola was switched back to the high flow oxygen.  She kept "swinging" the last few nights.  Her oxygen would dip and the nurses had to stimulate her so she would breathe again.  We aren't sure if her swinging is due to apnea, reflux, or both.

MONDAY, APRIL 18th:

Lola had been on 5 liters of the high flow, but now she is down to 4.  Just like the medications, they don't like to keep babies on a high amount of oxygen if they don't need it.  She now weighs 4 pounds and 3 ounces!  Go Lola!

TUESDAY, APRIL 19th:

Today has been great.  Lola is really starting to take her pacifier.  The nurses are saying she is getting feisty as well!  She is starting to wake up when it time to eat.  When Michelle holds her, she is starting to nuzzle into her breast (good sign for breastfeeding), and her breathing is continuing to do well.  She is now on 3 Liters of oxygen.

DEXTER, WEEK 2...

The week I got home from my C-section, my MIL took Dex.  I missed him so much but was grateful I could start the recovery process without having to chase Dexter around.  The second week of my recovery, my mom helped out with Dexter.  She would come pick us up in the morning and then take us to her house.  Dexter LOVED being at my moms house.  He loves seeing Bandit and he loves the big tub of Hot Wheel cars to play with.

At the beginning of this week when Derek and I got Dexter back, I wanted to do something fun with him but not too overbearing for me.  I missed planning and doing activities with my little buddy.  So, I thought what a better way to start the week than by finger painting!  I had been trying to introduce Dex to the glorious mess of finger painting for awhile.  So far, it has been a disaster.  He doesn't really like anything sticky or gooey on his hands.  He freaks out!  However, this time we tried it, he gave in.  He LOVED it!  He made some beautiful art work for his sisters crib side.  He was more interested in putting his fingers in the paint, rather than actually using his fingers to paint on the paper.  He made the best mess and since I was a week out of my C-section, Derek so kindly offered to clean up Dex and his mess.

I was so glad I got the dollar store finger paints in these little containers.  I didn't want to buy the big tubs of finger paint because I speculated that Dex would mix all the colors together.  By the end of the finger painting extravaganza, all the little containers were a gross color of brown or on the verge of black.  

After the finger painting, Derek took Dex in the shower with him.  Sometimes a shower is the easiest way to clean these toddlers, when you get messy from cleaning up their mess.  Well, Dexter did not like it!  Probably because he had so much fun the week before in Grandma Debbie's bathtub.  So, the shower turned into Dex and Derek taking a bath.  It was so funny seeing Derek in there, because our bathtub is on the small size.  Derek froze for 30 minutes from half of his body in the water, while he played with Dex.  It was quality man time well spent and I gave Derek the honorary award of, "Dad of the Year" for this sacrifice.  :)