Ellie Update - Week 4

Well, we've made it a month.  I think this is where I'm supposed to say I can't believe it's been a month already or it seems like just yesterday Ellie was born.  But when I think about Ellie being a month old today I can't help but think, is that all?  It feels like a lot longer than a month that we have been away from Scott, living out of suitcases at my parents' house, and constantly imposing on everyone around us. I am ready for life to get back to normal, although I'm not really sure when life will ever feel normal again. We just take it one day at a time. So here's the update.

Weight
29 days - 6 lbs 8.5 oz (0.8%) 19.5 in (1%)
Even though her weight gain slowed a little, the doctor was very happy with her average weight gain over the last two weeks. We are continuing the calorie packed bottles and don't have to check her weight again until 2 months!  Crazy to realize at 1 month old she is still smaller than all of my other kids at birth (Mason 8 lbs 2 oz, Brynn 7 lbs 9 oz, Miles 6 lbs 10 oz), even Miles who was technically preterm.

Eating
I met with a neonatal occupational therapist to evaluate Ellie's eating since she continues to choke very frequently during feedings. It took her all of 30 seconds to determine that Ellie is not able to swallow thin liquids very well. We are now thickening her bottles by adding banana baby food to them. By thickening the milk it slows it down and makes it easier for her to control it as she swallows.  She also showed me several different positioning techniques to use when feeding her. Her eating has drastically improved with all of this! The occupational therapist was very concerned about the suprasternal notch retraction that is extremely prominent in Ellie. The doctors have been attributing to tracheomalacia but she strongly suggested that we see an ENT (ear nose and throat doctor) to rule out such things as laryngeal webbing. So that's up next on our list of things to get checked out.

Breathing
Oxygen has been weaned down to 1/32 which is the smallest amount possible. We still have to go up to 1/8 while eating.  It sounds like the last step of getting her weaned off the oxygen entirely takes some time and so it will probably still be a couple weeks if not a month. Once again, I'm trying not to have any expectations, but just take it a day at a time.

With our whole life getting turned upside down and our definition of "normal" completely changed, I often wonder what is going through my kids' heads.  Here are a few great quotes from them about Ellie.

Mason was holding Ellie for the first time in the hospital and she was breathing really noisily and he said very matter of factly "Ellie snores just like Grandpa."

Since the kids weren't able to come see Ellie after she was born my mom showed Brynn a picture of Ellie. After looking at it for a minute Brynn said in total amazement "How did she get that bow on her head in mommy's tummy."

Mason was talking to Ellie while she was awake one day and then looked up at me and said "Ellie is the best baby on oxygen I've ever known."

Whenever I say things to Brynn like, "you wore that when you were a baby" or anything else that compares Ellie to another baby she quickly pipes in, "Yeah, but I didn't have oxygen."  Brynn is very aware that Ellie is different than most babies and will always point it out when I act as if she is the same as everyone else.

We were in the kitchen when one of Ellie's monitors alarmed and Miles pointed toward the living room and said "Baby".  Miles now thinks any beeping noise is associated with Ellie.

Brynn loves to tell everyone about her baby sister and how she's can't go anywhere because she is on oxygen.  The way Brynn says oxygen in her little voice is pretty adorable.

Mason made Ellie a note at church last week that read, " Ellie you are as cute as a baby alligator." You have to know Mason to  know this is actually quite the compliment.

We are to the point where we don't have to follow up with the doctor this week, so I guess the next Ellie update will come whenever I have something to update on. 

Thanks yet again for all of the love and support.  I don't know how we would be getting through this without all the help we have received, especially from my parents. My mom has put her entire life on hold to help us at this difficult time and while I hate not being self sufficient, I honestly could not be doing this without her. Thanks mom!

Sorry for no pictures. No time today.

Kindergarten Wrap-up

Mason with his Kindergarten teacher, Mrs. Adams

Mason's first year of school came to a close last month, but not without all the fun end of school activities happening first.  

Mason's class put on a very entertaining program to show some of the great things they have learned in kindergarten this year.  They sang songs, did dances, each child had a speaking part, and the night was finished with a great rendition of The Little Red Hen. Mason starred in the play as one of the wheat.  He grew tall when the little red hen planted the seeds and then dramatically fell when she chopped him down to harvest the wheat. You would have thought he had the lead role with how excited he was for his part. Luckily his program was the night before I had Ellie so we were all able to go and cheer him on.

Mason starring as Wheat #1 on the far left.

The next week I did have to miss out on the dance festival to stay home with Ellie, but Scott, Brynn, Miles, and Grandma Nancy were all able to go watch and they had a great time. It was held at the Scera Shell which made it really fun.  Mason's class did a dance to Lollipop Lollipop.  

Mason and his dance partner, Elsie, with their lollipops after the show. 

Between each class they did fun songs like the chicken dance and YMCA for all of the audience to join in. Miles is quite the dancer and loves to show off his moves anytime he hears music, so he was loving it.

Scott's priority was recording the dance for me so he didn't get any pictures of the actual dance, but here are Mason and Elsie participating in one of the audience dances.

Here are a few things about Mason's kindergarten year.

• I could always tell where Mason took off his shoes when he got home because there would be a pile of the black, ground up rubber from the playground that would dump out of his shoes.
• Mason would ask us to wake him up early every day so he could have some free time before having to get ready and leave for school.
• According to a mom who approached us at his kindergarten program, "All the girls LOVE Mason!" 
• Mason asked me to volunteer and come on every one of his field trips and was always super excited and proud to have me there. I better enjoy it while it lasts, because that is bound to change soon.
• Mason enjoyed the social aspect of school. When I would pick him up from school kids would be shouting goodbye to Mason from every direction.  When he got home from the last day of school he was a little bit emotional and when I asked why he finally broke down and told me he was going to miss all of his friends in his class.
• He and his friend Claire started the Spy Club at recess.  It was a very official club and he would often tell me, "Mom, I have a meeting with Emma after school on Wednesday because she is joining our spy club."
• Like most kids, recess was Mason's favorite part of school.  Due to our extremely cold winter they were hardly ever able to have recess during January and February. Instead, they would do kidsercise which Mason grew to hate. Mason whined and complained about going to school every day during those months, but as soon as the weather warmed up and recess resumed, Mason's attitude about school improved, too.
• Mason excelled in reading and continues to read well above his grade level. He got Scott's gift for spelling and got 100% plus the bonus word correct on every single spelling test.  He had to work a little harder on his math skills, but by the end of the year is turning into a little math whiz.
• The novelty of kindergarten wore off a few months into the school year and Mason would often complain about having to go to school "for 160 hours every day".  Apparently the 3 hours he had to spend at school each day really cut his day short and didn't give him enough time for all he wanted to do.  I wonder how he's going to feel when he has to go all day next year....I'm not excited to find out.

Ellie Update -- Week 3

After a discouraging week 2, week 3 really couldn't have gone any better.

Weight

21 days -- 6 lbs 2 oz!!!!

Ellie exceeded our goal of an ounce a day by gaining 11 ounces in 7 days.  Her length is up to 18.5 inches. She is getting too long for most of her preemie clothes, and is starting to fit in some newborn clothes. We will continue with the calorie packed bottles and check her weight again next week. 

Eating

Ellie is getting more coordinated with her eating. We have found that when she is hungry and awake she doesn't get as gurgley or choke as much, but when she's tired and we have to wake her up she doesn't swallow as well. 

Breathing
We were able to turn her oxygen back down to 1/16 and she has been able to keep her sats in the high 90s. We still have to turn it up to 1/8 when she eats.

Reflux

We started Ellie on medication for her reflux that seemed to be getting worse.  Apparently it's typical for babies in the NICU who have reflux to drop their sats when eating, so we are hoping if we get that under control it will help her breathing and eating.  It takes a week or two to see the full effects of the medication, so we will wait and see if it helps.

Cardiology

The best news of the week came from Ellie's appointment with the Pediatric Cardiologist at Primary Children's.  She had an Echo done in the hospital as part of a congenital workup. The echo showed a patent foramen ovale (which is perfectly normal in a 3 day old), a small subaortic ridge, mildly thickened aortic valve leaflets, and mild flattening of the Intraventricular septum.  The thing they were most concerned about was the subaortic ridge. When we asked the doctor in the hospital what that meant his answer was, "You know the high school kids that drop dead in the middle of a basketball game, they have things like this." A very comforting answer.  Apparently a subaortic ridge can lead to coarchation of the aorta, which is a big problem.  So we followed up with a pediatric cardiologist this week and she reviewed the Echo and said that she found it to be perfectly normal. She said that because of everything going on with Ellie in the hospital the cardiologist who read the echo originally must have been really picky and pointed out anything that maybe could be a problem, but in her expert opinion there was nothing wrong with Ellie's heart.  She recommended we follow up when Ellie is 3 or 4 years old.  This was such a HUGE relief. This has been one of the things that has been worrying us the most.  

Our goals for this week are continued weight gain, continue weaning oxygen down to 1/32, not requiring as much additional oxygen during feedings, and hopefully her reflux will improve with the medication.  We will follow up on all of this with the doctor on Friday.  We are hoping to have a better idea after next week if and when Ellie will be cleared to travel out to Omaha.

Tid Bits about Ellie

• Ellie has what I like to call "rabbit feet".  Her feet are super long and skinny compared to her short little body. They are probably my favorite unique trait of Ellie's.

• She looooves her big green binky that is the size of her whole face.
• She is not a cuddly baby and does not like being swaddled.
• She is a very alert baby and is awake a lot of the day. She reminds me of Brynn as a baby in this way.
• Mason is great to help me with "Ellie duty".

Not the cutest picture of Ellie but a great natural smile on Mason.  Also a great shot of her rabbit feet.

• Brynn has warmed up to Ellie and now completely adores her.  She loves to hold her with the boppy on her lap and loves to join her for tummy time.  Brynn is such a sweet big sister.

• Unfortunately, Miles has also gotten more comfortable with Ellie and now has been found trying to pull her oxygen off and jabbing her binky in her eyes on several occasions. He has also gotten much better at saying baby.
• Ellie still resides in the living room almost 24 hours a day. 

Ellie's "nursery"

• Ellie has super sensitive skin. All of the cords and bands from her monitors irritate her skin. She has had a constant diaper rash since she was in the hospital.
• She is remarkably strong for a little baby that the doctor said had a "floppy neck" in the hospital. The minute we put her on her tummy her little head pops right up and just looks around.

Captain Tornado

Like most 17-month-olds, Miles is constantly going at warp speed getting into trouble and causing mischief. Since we have come to live with my parents my dad has nicknamed him Captain Tornado because you know exactly where he's been by following his path of destruction around the house.  I remember this being a busy age with my other kids, but they were nothing compared to how crazy busy this boy is.  In his dictionary the words "no" and "stop" mean go faster.

A few of my favorite Troublemaker stories include:

A few months ago Miles was going through a toilet phase where any time a bathroom door was left open (which with a 3 and 5 year old going in and out of the bathroom all day, it happened a lot) I would find him playing in the toilet. Gross. One day I came to my mom's house and Miles booked it down the hall to her bathroom. I was only two steps behind him but he beat me into the bathroom and slammed the door closed behind him. He then opened one of the drawers right behind the door, making it impossible for me to open the door more than 1/2 inch.  All I could do was listen as he emptied out all my mom's rags and towels and played around in the toilet with them. After about 10 or 15 minutes he closed the drawer and emerged one very satisfied little boy.
Lately he loves to play in cars. When they came to deliver Ellie's oxygen tanks Miles followed Scott outside. While Scott was helping the delivery guy lift the tank out of the van Miles disappeared. After looking around for a minute they found him in the drivers seat of the delivery van "driving" the car.  The delivery guy got quite a kick out of it and learned he better not leave his door ajar while parked at our house.

Miles has always been an early riser, but lately he's been waking up earlier and earlier. It is part of his routine now that when he wakes up he begs Grandpa Val to take him to see the neighbor's chickens.  One morning he woke up at 4:45 and we could not get him to calm down because he so desperately wanted to go see the chickens.  He's been very lucky to have Grandpa Val as his buddy to take him exploring outside every chance he gets.

These are just a few little stories to remember our Captain Tornado.

I think Brynn says it best when she says, "We love Miles, we just don't love his messes."

Ellie Update- Week 2

We have so many wonderful family members and friends that are concerned about Ellie and want to know how she's doing that I have decided to do a weekly Ellie update. So here is quick overview of the key areas we have been focusing on this week.

Weight

7 days old -- 5 lbs 4 oz (o.6 percentile)

14 days old -- 5 lbs 7 oz (0.4 percentile)

Ellie failed to get back up to her birth weight by 2 weeks. The goal is to have her gaining an ounce a day but she gained less than half of that so we have started adding calorie rich formula to my pumped breast milk to increase her caloric intake. We will take her back to the doctor this week to make sure this gets her weight gain on track.

Eating

Ellie is still unable to latch on and breastfeed which is very sad for me.  I continue to pump and bottle feed which is time consuming, but worth it. The max volume she can tolerate is 2-2.5 ounces every 3 hours during the day and every 4 hours at night.  It takes her about 45 minutes to finish her bottle. She continues to struggle with the coordination of suck/swallow/breath and her O2 sats drop frequently during feedings.

Breathing
Ellie came home from the hospital on 1/16 of oxygen.  She is always hooked up to an apnea/heart rate monitor, but it does not tell us when her oxygen saturation is.  It has never made sense to me how we can be effectively managing her oxygen without a O2 sat reading.  So when our neighbor informed me she had an O2 sat monitor from when her baby was on oxygen and offered to let us use it I was thrilled. We hooked her up and her sats were 87-89.  We want them to be in the 90s. So I turned her oxygen up to 1/8L.  The next day at her doctor appointment we were planning on monitoring her sats and trying to wean down her oxygen, but the same thing happened and her sats dropped into the 80s when on 1/16.  So instead of weaning her oxygen down like we had hoped to this week, we had to turn it up to 1/8.  A step in the wrong direction. Bummer.

Life with Ellie
Her first three nights at home Ellie was an angry baby.  She screamed from 10pm-6am every night. As if being up all night with a crying baby isn't stressful enough, add in the fact that this crying baby doesn't breathe well and would scream until she turned purple.  Even with my mom, Scott, and I all taking shifts, after three nights we were all running on fumes.  One of my mom's neighbors who just had her 9th baby recommended we try a cradle swing.  We gave it a try and this swing is magical!! Ellie sleeps so well in it and when she is unsettled and fussy at night we just turn on the swing and she settles right down.  She now has her days and nights straightened out and it's a shame I have to wake her up every 4 hours to eat or I'm sure she'd be giving me some nice long stretches of sleep.

The hardest part about having Ellie on oxygen and hooked up to monitors is she is on a 10 foot leash. We have turned the living room into Ellie's bedroom with her big oxygen tank and swing set up in the corner.  In order to move around with Ellie we have to switch her oxygen over to a portable tank and then load up with 30 pounds of equiptment before becoming mobile.  It's inconvenient to say the least. It's very hard to take care of Ellie and my other kids without being able to move around freely with Ellie in my arms.  After just a week of this I am feeling very trapped and can't wait for the day when Ellie will be cord and tube free. Not to mention the day I can sleep in a bed again rather than on the couch next to Ellie's swing.

Our goals for this weeks are for Ellie to gain an ounce a day and ideally to wean her oxygen down to 1/16, although I'll be happy as long as we don't have to increase it anymore.

Preschool Grad

Brynn is officially a first year Graduate of preschool.  This year has been such a wonderful experience for her.  She looked forward to each and every day of preschool and was always disappointed on her days off.  She would proudly display her work on the fridge and can often be heard singing all of her preschool songs while she plays. More than anything she loved her preschool friends and always looked forward to seeing them. 

Thanks to my wonderful sister-in-law, Kacie (a NICU nurse), who was willing to come watch Ellie on just her second day home from the hospital, we were all able to go watch Brynn in her preschool graduation.  I was so glad I didn't have to miss all the waves and thumbs up she gave us during her performance.  As Mrs. Young hands out the diplomas she tells what each child wants to be when they grow up. Brynn wants to be a mom.

We are so proud of Brynn and can't wait for more preschool fun next year.

Brynn and Mrs. Young

Brynn and her best friend Emmett Davidson.

The family minus Ellie.

Tornado Alley

Scott has been in Omaha for a week and now knows what it means to live in Tornado Alley.  The first night after he arrived in Omaha he woke up to Tornado sirens going off at 1:30am. Luckily there haven't been any Tornados in Omaha, but Scott now knows what constitutes a true thunderstorm and high speed winds.  He said he has never witness such crazy storms.  The sky turns black and when the rain starts it comes down in sheets.  

I have to mention that Mason is TERRIFIED of tornadoes.  I'm not sure who told him there were tornadoes in Omaha, but he has been really nervous about it ever since we told him we were moving there. Every night in his prayers he asks that we will be safe from the tornadoes when we move to Omaha.  It's probably a good thing the kids and my move to Omaha has been delayed so these storms can pass and Mason won't be traumatized for life.