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.






Friday 4/8

Today, Lumin was weaned off the 840 ventilator. Now she is breathing with nose prongs and oxygen support only. They also removed her umbilical venus line. She is taking breast milk by feeding tube, and digesting slowly. She remains on three anticonvulsant medications, IV fluids, and antibiotics.

The best way to explain what is happening is to tell you that Lumin has a moderate to severe case called Hypoxic-Ischaemic Encephalopathy. Here is a website about it.

Also, many of you have asked if you can donate money to help Lumin. If you want to help, you can make a deposit to an Ent account we set up for that purpose. It's account number 555442, and it's under dad's name rather than hers. If you don't want to go to Ent, you can use our Paypal account instead. Just click the button below. Thank you SO MUCH. We feel blessed to have so much support from friends and family.



Thursday, April 7, 2011

MRI Results

Lumin's MRI results came back this afternoon and they don't look good. There is damage to several parts of her brain. The prognosis remains uncertain, but it's worse than before.

On the bright side, she's starting to wriggle around a lot more and get her muscle tone back. She has been yawning in a really cute way.

For those who have wanted to give money, we'll be opening an Ent account that anyone can deposit into sometime soon. We'll make sure to let you know how to use it as soon as it's set up.

-Ben and Monica

Lumin's Current Status



Lumin Elise Windsong was born on Fri. April 1. See her birth announcement here.

She is in the Neonatal Intensive Care Unit at Memorial Hospital Central.
She was been here since about 12:20 AM on the morning of Saturday, April 2.
When she was admitted she had multiple system failure including respiratory failure, pulmonary hypertension, kidney failure, liver dysfunction, and unconsciousness.

Over the next several days, her lungs were treated and she was kept on a ventilator called an oscillator. As of Wednesday she was changed to a less intense ventilator called an 840. Her heart hypertension was treated with drugs and has subsided. Her kidneys and liver were treated and are now functioning much better.
Her brain was put on a cooling system called the "Olympic Cool Cap" for 72 hours to minimize brain damage. Since it was taken off, she has had seizures regularly. Currently, she is on four medications to treat the seizures, and they have slowed down but are still continuing. This morning she has had a brain ultrasound, EEG and MRI.

Thank you for your support and prayers. Please envision Lumin's head filled with light.

If you wish to help us out, we have a meal train set up. We would also appreciate gift cards to restaurants that are near the hospital.
Or, you can look at our baby registry.
If you still need something more to do, you can contact Grandma Rachel for more ideas.

-Ben and Monica