Saturday, December 3, 2011

8 months of adorable

It has been a shamefully long time since we wrote a post, but here's a new one for anybody who is still tuned in!  Lumin turned 8 months old 2 days ago.  Still growing and developing beautifully.  Her hair is slowly but surely filling in.  She's enjoying quite a few foods these days, favorites being avocado, blueberry, spinach, and pretty much anything she can feed herself.  She's close to crawling, but for now she makes do by scooting around backwards on her belly or scooting on her bottom.  Much like the kitties, she's very interested in strings, cables, and cords right now.  And plastic bags and wrappers.  Who needs toys?

Because verbal delay was one of the most likely outcomes of Lumin's injury pattern, we had a appointment with a speech therapist about a month ago.  She confirmed that Lumin is right on track for her age. 

Over Thanksgiving break, we made the journey be with family (Monica's) in RI.  Flying was tough on her ears, but Lumin was a champion traveler.  She charmed her extended family, as well as a few random traveling strangers and she saw the ocean for the first time.  After all the excitement we are looking forward to a mellow and cozy Colorado Christmas at home.

Here are a few of our favorite pictures from the last few months.  Enjoy!

Love,
Monica, Ben & Lu




Monday, August 1, 2011

Lumin practicing sitting on her 4 month b-day



This past Saturday we attended Memorial Hospital's NICU reunion.  Memories came flooding back.  It was held in the same park we walked laps around while Lumin was in the hospital.  It was amazing and humbling to see the big healthy kids who once were NICU babies and the tiny ones who still need so much support.  We got to see our favorite doctors and nurses and they were so impressed with Lumin's size and personality.  What a journey we've all made in these four months!

Lumin seems to be more active and noisy by the day and has earned herself the title "wiggly wombat".  So far she has only rolled over in her sleep, but she loves sitting and standing with help.  Last month she began the slow work of teething.  No teeth yet, but lots of chomping and lots (and lots) of drooling.  Lumin's also been growing like crazy--15.5 pounds when last weighed!!!!  She is keeping us laughing and building our biceps :)

Monica, Ben & Lu

Friday, July 1, 2011

3 months

Lumin Elise is three months old today!  At this very moment she is happily wriggling without a diaper on--her favorite state now that it's hot out.  We went to see her neurologist on Tuesday and he said that she just might be their "brain cooling miracle baby."  She is right on with her motor development and we got the OK to start weaning her last seizure medication, which means we'll be med free by the end of the month.
Lately Lumin's been keeping busy by learning to grab things.  She's very into her hands and they seem to be moving all the time.  Her current weight is 12 lbs and her length is 24 inches!  It's amazing how fast she's been growing.  Here are some new photos:






Sunday, May 29, 2011

Summer!

Hi all!

We are so excited to be settling into a slower-paced life now.  Ben has finished school for the year and we look forward to a summer full of gardening, camping, making music, and enjoying being a family.

Lumin is still doing very well.  Her 2 month doctors appointment is in a few days.  We're guessing that she weighs something around 11 pounds now!  She continues to wow and charm us.  She's very active and regularly returns smiles. 

Now that there is (thankfully!) less to report, we will probably only be updating occasionally.  Here are a few recent pictures for y'all.

Lots of love,



Monica, Ben & Lumin

Sunday, May 15, 2011

THANK YOU!

The concert was a great success and so much fun.  Thank you to everyone who came out.  Lumin wanted us to post this video of her expressing her thanks from the changing table.

Saturday, May 14, 2011

free of tubes!

Lumin got the ok to go off of her supplemental oxygen on Thursday!  She seems much more comfortable and it is so nice to be able to move around freely.  Plus it's easier to kiss her big nursing cheeks without the tubes in the way :)

We are very excited for the concert tonight--perhaps we will see you there.  More pictures soon!

Love,
Monica, Ben & Lumin

Friday, May 6, 2011

5 weeks

We haven't written in a while!  Turns out life with a little one is both busy and slow at the same time.  Little Lu turned 5 weeks old today.  She is doing great aside from some gas and fussiness.  At her doctor appointment on Monday she had gained 7 oz. in a week!  She also got the ok to lower her oxygen supplementation.  That means she could be off it entirely pretty soon.
We are enjoying a visit from Lumin's Aunt Stephie and Cousin Sylvan.  Her Aunt Jo (would she be her great aunt?  well...we think she's great.) was here earlier in the week.  Below are some recent pictures.  She just keeps getting cuter.



Sunday, May 1, 2011

One Month Old

Lumin is officially one month old today!

Yesterday, we celebrated by giving her a bath, dressing her in a fine outfit, strapping her to Ben's chest, and taking her for a jaunt around town. But she slept the whole time and missed it. Oh well. Later, we took her to Grandma's house, and she was awake for that, so all was not lost.

Lumin had an oxygen trial last night. The home health care company brought us a pulse oximeter, a machine that measures the oxygen in her blood. We hooked her up to it, turned her supplemental oxygen down (to 1/16th of a liter per minute), and the oximeter recorded the results. We wish we could tell you more about what those results were, but we were asleep most of the time, and the pediatrician hasn't read them yet so we don't really know. If all went well, she'll be on her way to a lower supplemental oxygen level soon. Then it's just a hop, skip, and a jump to being off the nose prongs for good. Her antibiotic course also ended yesterday. Now she's down to two anticonvulsants and the oxygen. This means only four medicine doses per day, instead of seven. Yay!

We've let her know that she's already a local celebrity. She is very chatty and sociable (when she feels like it), so we're sure she'll be very excited when she's finally old enough to meet everyone.

Tuesday, April 26, 2011

After a few days at home we are starting to relax a bit and getting to know each other better.  We were pleased to learn that Lumin likes to be cuddled in her Beco carrier because we like it a lot too.
 


 In the picture below it looks like Lumin is doing "I'm a little teapot."  This is actually her "concentrating on pooping" face.  She surely will appreciate this documentation when she's older.
 Here is a picture of Lumin and Dad during one of their many intimate conversations.
 And here is a very satisfied milk-filled baby.
We are still adjusting for sure, but it is so wonderful to be at home.  We feel so lucky to be enjoying this time together after all that we've been through in the last month.

Monday, April 25, 2011

Life at Home

Things are going pretty well at home so far. Lumin has been alternating between relaxed, chatty, and very upset. She's not a huge fan of sleeping in the crib, which has been tiring, but we have some new ideas to try tonight. She also got some bad congestion in her nose, then sneezed about eight times last night. The boogers exploded from her nostrils. We think she felt better afterward. The cats seem to like her; they gave her some loving rubs with their faces.

Today, she had her first visit with the pediatrician. She was very helpful and optimistic. She gave us some ideas about the crib problem, and suggested we get our home health company to add a humidifier to the oxygen set up. We'll see her again in a week for a weight check.

Below you'll find links to a number of sites about kids who went through experiences:
1. http://sophiejourney.blogspot.com/2011/02/hope-for-hie-foundation.html 
2. http://www.facebook.com/group.php?gid=90707410519
3. http://www.onetruemedia.com/otm_site/view_shared?p=9612a5eb1ece60d2490abc&skin_id=1702&utm_
4. http://www.coolcapcutie.blogspot.com/

Saturday, April 23, 2011

Home At Last

We were discharged from the hospital today! After 22 days in the NICU, we came home to our cozy house and loving cats. Lumin slept through the ride home, and woke up just in time to experience a little bit of the outdoors as we brought her in from the car.

We're all exhausted. She remains on supplemental oxygen, two anticonvulsant meds, and two antibiotics. We have follow up appointments with at least five different doctors in the coming weeks and months. It will be vital to watch Lumin's development as she grows, because she remains at high risk for developmental delay, cerebral palsy, apnea, low verbal IQ and more. For now, though, we're home. We can finally rest.

Thank you all for your ongoing prayers, meals, donations, support, and cards. Once again, we feel blessed that the community has been there for us. Stay tuned to this blog for development updates, photos, and more. We're also planning a big fundraiser for Lumin's medical bills and her future. It will be on the evening of May 14 at the Manitou Springs School District Auditorium and will feature the best of local bands. More information is forthcoming.

-Ben and Monica

Friday, April 22, 2011

One More Day (?)

There isn't much to report about Lumin from yesterday. The swelling on her head remains, though it seems to be about the same size or maybe a little bit smaller. Her feedings are going well and she's taking her meds. The oxygen team came by and instructed us on using the oxygen tank at home. She has been very chatty lately, and has had many long conversations with dad about current events. She's very opinionated about the U.S. intervention in Libya.

Hopefully, Ktoday will be a day to tie up loose ends around the hospital as we prepare to go home tomorrow. Knock on wood...

Wednesday, April 20, 2011

Lanced

So there has been another (hopefully) slight setback. Lumin has had a large scab on the back of her head. We think it was a side effect of the cooling cap. It has been getting smaller as time goes on, but Monica noticed in the last couple days that there was some swelling happening around it. After  she mentioned it to various practitioners of all levels, the doctor finally took a look at it today. His assessment: it's either infected or cellulitis. He lanced it to see if it would drain. It didn't, which is apparently reassuring (no pus).

We chose give her oral antibiotics in the hope that it's a localized infection. We'll watch to see if things get better or worse. If they get better, we'll go home this weekend and keep her on antibiotics for several more days. If they get worse, we may have to treat for a systemic infection and stay in the hospital for another ten days.

So hopefully all will be well and we'll still get out on time.

In other news, she had her second bath today. She's also gaining weight, which is great!


Tuesday, April 19, 2011

Hash Marks On The Wall

Since we moved back to the pod inside of the NICU from our rooming in room, things have been going well on the whole. Lumin continues to breastfeed and needs no support beyond a little oxygen and two anti-seizure medications. Tomorrow she will have another EEG. If it looks good, we will begin to wean one of the meds. We picked out her pediatrician last week, and she stopped in to meet the baby today.

She hasn't had any more apnea episodes. There was a point where her respiration rate was showing up as only seven breaths per minute, but that was because the monitor is built for adults, so it wasn't reading her very shallow breaths. She was, in fact, breathing. It was shallow, but we're told that's fine for babies to do. Now Ben believes it was more his fear than actual danger that made the episode on Sunday night appear so scary.

We are slated for discharge this weekend. Hopefully all will go as planned this time. We are just putting hash marks on the wall until then...

-Ben and Monica

Monday, April 18, 2011

Or not...

Unfortunately, yesterday's plan did not play out as expected. We did go to rooming in last night, but we didn't get to stay there.

Lumin may have had an episode of sleep apnea. She was resting very peacefully. So peacefully that we thought her chest might not be moving at all. Ben thought he saw a blueish-purple color in her forehead. We roused her, then called the nurse. She came and checked on Lumin, but she looked fine. Nevertheless, the nurse practitioner made the decision to move us back into the main NICU so they could monitor her for the remainder of this night.

This morning the doctor came by and talked with us about what happened. They want to watch her and make sure there are no further apnea episodes. The bottom line is that we have to stay through the end of this week now. We might get out on Sunday, if there are no other changes. Again.

We are pretty disappointed. We were really looking forward to going home, and having some quiet. This means five more days and nights of alarms and sleeping in chairs. The end is in sight, but we're still feeling down about what happened.

Sunday, April 17, 2011

Looking Up Again

Things are looking up again. Lumin's stomach problems have subsided, and she's been awake and smiley much of the time. She's back to breastfeeding, and getting good feeds. They also had us try bottle feeding her, just to make sure she could. That has gone well, too.

Today's bad news: they made her sit in her car seat for 90 minutes to make sure she could breathe. Also known as baby torture.

Today's good news: she passed her hearing test with flying colors. She's detached from everything but a little bit of oxygen. She's down to two medications, which should be going down to one very soon.


Saturday, April 16, 2011

Backslide

A lot has happened since our last post. But, due to internet connection problems at the hospital, we haven't been able to update you until now.

On Thursday night, Lumin began throwing up in the middle of the night. A lot of the milk got stuck in her mouth and nose. The nurse suctioned her, and she began to scream inconsolably. She then slept for almost eight hours without feeding. She vomited a total of four times in the first half of Friday.

The doctors were concerned about what could be happening, so they ordered more blood work and X-rays. There was a chance that she had Necrotizing Enterocolitis (NEC), which would have been very serious. Fortunately, the tests disproved that hypothesis. We were relieved, because it was such a scary possibility. We think it may have been a stomach bug.

Because of this episode, Lumin had to go back on IV fluids. She was crying a lot through Friday night, but eventually her pain seemed to subside and she slept.

Saturday morning she resumed breastfeeding. Because of the setback, we'll probably have to stay in the inpatient room a couple more days before they let us "room in". So, things are once again looking good for us going home soon, but it won't be as soon as we first hoped. Due to that fact, we added a couple more dates to our meal train for next week, in case you wanted to sign up but haven't yet. If you want to help in a different way, look back to one of our earlier posts here and here.

-Ben and Monica

Thursday, April 14, 2011

Rooming In

The EEG results came back yesterday. They showed that Lumin is no longer having seizures, although there are still a few "abnormalities". They are taking her off one of the anticonvulsants.

Occupational therapy and lactation experts agree that she is making good progress on breastfeeding. She continues to be alert and wiggly. Ben read her her first fairy tale today, The Ice Queen.

If things continue to go well, they're going to give us a private room some time tomorrow, as a transition to going home. From there, we are hoping to be discharged early next week!

-Ben and Monica

Wednesday, April 13, 2011

Baby Zinger

Yesterday was the beginning of our transition into a calmer baby life.

In the morning, Lumin underwent another EEG, this time fully conscious. She apparently considered the wires a fashionable accessory - see the second picture below.


After the EEG, she got her very first bath. We scrubbed off all her flaky skin. I don't think she liked it very much.




On the other hand, she seemed quite happy afterward. We rubbed her with a nice lotion that made her smell like an herbal tea. Ben dubbed her "Baby Zinger".




Most exciting of all, Lumin was able to try breastfeeding for most of the day! As soon as she is able to breastfeed and gain weight consistently, we can bring her home. She's off to a good start so far.

This morning, we dressed her in her very first onesie. Oh my goodness.

-Ben and Monica

Monday, April 11, 2011

First Swaddling

Today was another excellent day.

Lumin reached many milestones, including:
-Ditching the snorkel for a pair of "low flow" oxygen tongs.
-Opening both eyes and looking around a lot. A lot a lot.
-Pooping on her own, without glycerin to help.
-Taking out the IV. She's feeding enough on her own and doesn't need them.
-Getting her first swaddle. See the photo with Grandma Sue below.
-Getting her first pacifier. The doctor talked us into it, since she can't breastfeed yet and we want her to associate being full with the suckling action.

The day was also very stimulating for us parents. It's easy to fall in love with your baby at an accelerated pace when she can finally open her eyes! We also interviewed our first potential pediatrician, and liked her a lot. Later, Ben took a second look at Lumin's MRI and concluded that her thalami and basal ganglia appear to be in pretty good shape. In his very unprofessional opinion.

A special thanks to each and every one of you who has supported us with meals, help, and money. Every day more donations come in and we feel so thankful to have the support of our loved ones.

 -Ben and Monica



Sunday, April 10, 2011

Holding Lumin

Today was a wonderful day.  This morning the doctor suggested that we massage Lumin's body to help her mobilize the excess fluids in her tissues.  After several minutes of massage she became more active than we've ever seen her--kicking, stretching, and showing much better muscle tone.  She even managed to open her eyes (mostly just the right one) and give us a good stare. 

We spent most of the afternoon holding her and that did us all so much good.

She is handling her increased feedings well.  If she continues to do this tomorrow she can get her IV out.  She is off her antibiotics and she may be able to get off the CPAP (snorkel) tomorrow and give the high flow oxygen another try.

Monica & Ben

Saturday, April 9, 2011

The Snorkel

We just wanted you to see the snorkel. And our first lengthy holding session!







Taking out the tubes...slowly but surely

Lumin is getting out the last line running into her umbilical stump in about half an hour! We should be able to hold her quite a bit after that. We're glad to see it go since we've been informed that interior lines like this one run a higher risk of infection after the first week.

Although she remains on an IV for fluids and nutrition, we have hope that she will be off that in the next day or two as her stomach is able to digest more food. Her intestines, kidney, and liver seem to be functioning well.

In respiratory news, she wasn't handling being off the 840 ventilator very well on her own, so they put her on the CPAP machine. It kind of looks like a rhinoceros mixed with a football helmet.

Lumin has not had any seizures in a couple of days now, but remains on three anticonvulsant meds until at least Monday. She will also be stopping her antibiotics soon.

Thank you to everyone for your huge outpouring of support and prayers. We feel very blessed and are grateful to you all.

-Ben and Monica

Friday, April 8, 2011

Some photos

Monica got to hold Lumin tonight! Here are some photos of the event, and some other photos of the baby.