We've moved!

You should be automatically redirected in 6 seconds. If not, visit
and update your bookmarks.

Wednesday, March 31, 2010

Roller Coaster Ride

The past few days have been a kiddie-size roller coaster for CA. Nothing has been too bad, nothing's been too great. We met with the doctor again last night and here's the tentative run down for the week, plus a few extra things:

Weight: Currently weighing in at 660 grams (1 pound, 7 ounces).

Neuro: They will be doing another head ultrasound this week to rule out any brain bleeds. They are also checking to make sure the white matter in her brain is developing properly/in the right places. So far she's had two head u/s and has passed with flying colors-- which is phenomenal. Brain bleeds usually occur within the first week of life, so we're mostly out of the woods with that one, (of course, anything can happen, right?) but they just like to check to make sure.

Gastro-Intestinal: She's up to 7mL every 3 hours, and they are still increasing her feeds by .5mL every 12 hours. Tomorrow they will be adding fortifier to the breast milk, which adds protein, salts and a bunch of other stuff. This takes the breast milk from 20 calories/ounce to 22 calories/ounce. If she handles that well (sometimes it sets the little ones back a bit) then they will add another fortifier which will make the breast milk 24 calories/ounce. She should be up to "full feeds" by the beginning of next week.

Heart: Her heart has returned to "normal" size and is functioning really, really well. Her arterial line (the line monitoring her BP) came out on Monday and so she's not quite so tied up anymore. Her blood pressures have been fine and they are letting her do her own thing without medication.

Lungs: These have been the cause of the ups and downs all week. The doctors are trying to find a happy medium where she is working enough on her own to get strong, but not too much to wear her out. They've been playing with her vent settings for the past few days, but it seems that one pressure over inflates her lungs and the next setting under inflates her lungs. She has experienced Atelectasis (the sacs in her lungs have collapsed in some areas) off and on this week, which in turn means her CO2 levels have been too high, which means they have to take more blood, which means she's not oxygenating as well, which means they have to change the vent settings, which causes more atelectasis... phew. Thus the roller coaster. They'll figure it out, but for now, it's a guessing game. In an effort to stabilize her lung function, they are going to give her a bolus (one large dose of medication) of a steroid called Decadron. It's a pretty powerful steroid that will clear out the inflammation in her lungs (the fluid that's making it hard to breathe). At that point, they will try to take her off the vent and put her on the CPAP machine.

Sorry... that was really long.

Adrenals: Currently, CA is not making enough cortisol (the body's stress hormone) to compensate for the amount of stress she is under. This qualifies her as having "adrenal suppression" but it isn't something that should be a problem long term. She's continuing to receive hydrocortisone to help balance this out until she is capable of meeting her own needs.

Sunday, March 28, 2010

Speaking of Miracles...

These are all the wires, cords, IV tubing and monitors needed to keep this little one going.**

She eats 3mL (this amount pictured) every three hours.
She's trying to keep that girlish figure.

Best of all, I got to hold her today!

**Her wires and accessories are NOT usually like this. Her nurses take great care to make sure everything is in the right place and that CA is comfortable. They were trying to position her so that I could hold her yesterday and we snapped a picture so we could remember how much it takes.**

What a weekend it has been! Saturday, Peter and I headed over to the hospital to see our little gal before we headed down to the Washington D.C. LDS Temple. When we had spoken to the nurse that morning, she didn't seem too hopeful that I would be able to hold Charlotte Amalie (I hadn't held her yet so we ask allllllll the time) so we figured it would be another day. When we got to the hospital, the nurse told us that the Nurse Practitioner had given the OK for CA to be held!

After about 40 minutes of moving all her junk (see first picture) and getting it all in the right place, I finally got to pick our little girl up. Just about as I sat down in the chair, the nurse started getting worried and said, "Sorry, she has to go back on the table." CA's heart rate had plummeted and she was a rather ugly shade of grey. The nurses worked their magic and she was back to her pink self in no time, but it was very apparent that Charlotte Amalie just didn't have it in her to be held. We left the hospital, a little bummed out, but resolved to just try again next time.

Today I went in to see her, not even imagining that they would try to let me hold her again today, especially after all the craziness that it entails to get her ready to be held. As I walked in to see CA, her dear, dear nurse explained how she had rigged everything up so that I could hold our little girl. Instead of doing kangaroo care (skin to skin contact--it's very therapeutic for the babies), she wrapped CA up so that all her packaging would come with her and I could hold her just like a regular little baby.

It was rather bulky (I couldn't even feel her body in all the blankets and cords) but her tiny head on my chest was one of the best feelings I have ever, ever, ever experienced.

One month in and I held our baby.

1 Month

Happy One Month/ 4 Week Birthday!

Today we celebrate the wonderful nurses and doctors who work to keep you going. We also celebrate the researchers, pharmacists, and technicians who developed and produced all the amazing technology and medicine that keeps you alive each day.

We celebrate your heart for continuing to pump so well, we celebrate your lungs for fighting back. We celebrate your tiny fingers and the circulatory system that keeps them pink and warm.

We celebrate each hair on your head and wonder how much of a fuzz ball you would have been if you had waited a few more months.

We celebrate each time you open your eyes, each moment you breathe in and out. We celebrate the resiliency you possess, the gentleness you invoke, and the fierceness with which you fight.

Today, we celebrate miracles.

Friday, March 26, 2010

28 Weeks

CA's gestational age is 28 weeks today. She's getting so old (not quite "so big" yet). It's hard to believe that it was 4 weeks ago that I was sitting in the hospital wondering how long I was going to be there...


CA had quite the week! Here's her run down:

Weight: She's a whopping 710 grams (1 pound, 9 ounces).

Heart: CA was switched to a new medication this week to manage her blood pressure. She's currently getting hydrocortisone, which is a manufactured equivalent to cortisol, the body's stress hormone. Doctors and researchers are not sure why it affects the blood pressure the way it does, but the important thing is, it works. She's been on this since Wednesday morning and has been responding much better. The dopamine (the medicine that was making her heart contract harder) was working, but it wasn't really helping her to get better-- it just maintained where she was. Her blood pressures have been much more stable and her heart is looking better and better on X-Ray.

Lungs: Charlotte Amalie was extubated (the ventilator was removed) today! She'll more than likely have to go back on the vent tonight or tomorrow, as breathing on her own just seems to make her too tired, but she was able to wean off of the vent, which is encouraging. Her lungs have been classified as having "chronic lung disease" which means that the damage done to her lung is not reversible. The good news is that she will continue to create new lung tissue and grow new alveoli (the tiny sacs in your lungs that facilitate gas exchange), which will all be able to compensate for the damaged lung. Since her lung damage is "chronic" it will be more difficult to get her off the ventilator for good, but these chances that she has to be off of it are good-- even if they are just for a few hours at a time.

Digestion: CA is a rock star here. She's started to pass stools and they are increasing her feeds every 12 hour by .5 mL. Currently, she's at 2 mL every 3 hours, so at midnight tonight she'll increase to 2.5 mL and at noon tomorrow she'll increase again to 3 mL, etc. She needs to be able to take 10-12 mL every 3 hours to be considered "full feeds" but hopefully we'll be able to make the increases slowly and we won't have any set backs (knock on wood).

Kidneys: Yupp, they're still working like a champ.

Thank you all for being so wonderful! We're 26 days into this. Here's to another 80 or so.

Thursday, March 25, 2010

Wednesday, March 24, 2010

Awesome People

One of the amazing things about CA is how much kindness she brings out in others. I need to document some of the amazing things people have done for us, because that's just as much of a miracle as CA is, right?

-My cousin's son goes to a Catholic elementary school. He has shared CA's story with his teachers and classmates and now, our dear daughter is included in the morning prayers each day. How can things go wrong when you have elementary school kids praying for you each day?!?

-Numerous children have sent Caleb care packages. One child in particular sent Caleb a coloring book with his own stickers in it, since Caleb has to spend some time away from his Mommy. He said that Caleb needed to have something to do since Mommy wasn't around as much. Would you give up your "stickers" to make someone else feel better? Kids are so awesome.

-A member of our congregation at church sent us a check for a dollar for each day that CA came early. People have been so incredibly generous. We've received gift cards for gas (we drive a lot), visa check cards and many, many greeting cards in which people express their support for us.

-One of Peter's good friends from growing up had a pendant made for me with CA's initials. It's so beautiful and it's one of my favorite pieces. It's like having her with me when I can't be near her. (How corny is that?)

-We've been told of people who don't even know us making blankets for CA (a volunteer at my mother's work knitted her a baby blanket), and of others adding her to prayer lists at their Bible study groups, churches, and temples. We've had Christians, Muslims, Jews and Hindus offering their own prayers to their own Deity for our child. If one tiny, little one pound baby can bring so many people together, why is the world so messed up?

-Not to mention the millions of people who have driven us places, prayed for us, brought us food, watched Caleb or just listened to me ramble for hours on end. We've received so much support from others who have had micropreemies, as well as support from our friends and family who just let us be the crazy parents we are right now.

The whole point is to say we love and appreciate you all. You've touched our lives and have made the past few weeks doable. Please, if you are doing something to make CA a part of your day, let us know-- it's what keeps us going.

We've got a long way to go, but the only way we're going to make it is with all of you in our lives.

Monday, March 22, 2010

Day 22

Charlotte Amalie looked pretty good today. Peter and I have been able to help with her "hands on care" the past two days, which was a little intimidating to be perfectly honest. All we did was change a diaper and swab her mouth with breast milk, but I was scared out of my mind. Since she was born, our prayers have always been that she might come home soon, but after changing her tiny little diaper, I've decided she can just go ahead and stay in the NICU until she's a good 8 pounds. :)

In all seriousness, it was a little scary to help with her cares, but it was wonderful, too. Sure, I just changed a diaper, but I felt, in the smallest way, a little involved. And that always helps.

Of course, here's the current run down:

Weight: She's lost some water weight, so she's down to 660 grams (1.45 pounds). It's 100 grams more than she weighed when she was born, just 22 days ago.

Heart: Still slightly enlarged, but it's doing it's thing. She's still on dopamine to help the heart contract harder and her blood pressures are still a little helter skelter at times. She's much, MUCH, more stable than she has been over the past week, but not quite stable enough to do much on her own. They have an arterial line in her arm to monitor her blood pressure constantly, so we won't be able to hold her until they are able to remove the art line. (The arterial line is very fragile and could be "lost" when she moves, so transitioning her from her bed to our arms poses a significant risk).

Lungs: Still a little "boggy" as the doctors like to say. They've started her on two days of Lasix (before she just got one single dose) to try to dry out her lungs a little more. When the lungs are wet, they become stiff and the tiny air sacs in her lungs don't open all the way. In order for her to get off of the ventilator, her lungs need to be a little less stiff so that she can breathe on her own.

Digestive System: They've increased her feeds to 1 mL every 6 hours. She still doesn't have any bowel activity (remember how she was on a paralytic before?) but they're hoping that they can kind of push her into action.

That's about it. For the past few days, they've mostly been trying to keep her at status quo. Today, they seemed to be thinking more about pushing her so that she can get off the vent. So while she's still pretty much doing the same thing, our focus on where she should be going is starting to change. It's a slight change, but still-- a bit of progress.

A big thank you to Stacia, who designed our blog header for us. I have no idea how she did it, but I think she may have used special computer magic. Again, in all seriousness, we love it and we really appreciate having something so nice for her blog. You rock!

Sunday, March 21, 2010

about even

Charlotte is doing well. She has not made any significant improvements, but has remained steadily on a good track.

General: She is much more active today. She is moving around and opening her eyes. She does not like much noise and they have her in a private section of the NICU.

Heart: She is still on Dopamine to strengthen her heartbeats. She goes up and down on the amount she is getting, but it seems to be working. They have not done any cardiac echos or anything like that. They believe her heart function will continue to improve. She has a regular heart rate and her rhythm is good. She continues to get frequent blood infusions, but the doctors and nurses believe that these will lessen over the next week as they decrease the amount of labwork they are running on her.

Lungs: She is all over the map on this one. We are still in the process of trying to dry them out after they were filled with blood by the PDA. Yesterday she was only requiring 24% oxygen, but today she is on 45%. The ventilator is still doing a lot of work for her, so it does not look like she will be coming off the ventilator in the next few days. She's currently on a lasix to help dry out the lungs.

These are her best performing organs, so we like to talk about them to make her look better :)

Friday, March 19, 2010

Heavy Weight

Just a quick post to note that yesterday, Charlotte Amalie weighed in at a whopping 700 grams.

That, my dear readers, is 1.54 pounds!!

We've crossed the one and a half mark (by.04 pounds, but hey, it should count!)

Wednesday, March 17, 2010

A Better Day

Charlottes bed. They are using her as a poster child to convince the hospital to buy another one. They are ~65,000 a piece.
This is Charlotte's IV pole #1. She is on quite a few drugs, but we are so thankful that they seem to be working.
Charlotte on Peter's chest sleeping.
Peter doing "Kangaroo Care." This was the first time either of us got to actually hold Charlotte.
Charlotte resting comfortably yesterday.
Today was a much better day for Charlotte. Last night the doctors decided to temporarily paralyze her so that she would not fight the ventilator so much when she breathes. It seems to have worked very well. They were able to reduce her ventilator setting to a level more consistent with breathing room air in a normal environment. She was also assigned her own nurse 24/7
I am going to do the update systems based. Overall picture is, she is doing well. Her heart is working better and her lungs are looking better every hour.

The heart failure that was occurring yesterday has improved today. They used Dopamine and Epinephrine to cause her heart to contract more forcefully. The good news is that her heart responded very well to these medications and they have already started to wean her down on the dopamine. She was also given steroids to increase her blood pressure. Her blood pressure has been in a good range and stable throughout the day. She currently has 3 IV poles with ~8 different drugs running into her.
Now that she is paralyzed by the medication, she has much improved lung function. She is down to room air on the oxygen setting and is coming down on the other settings as well. Her lungs are still "wet" from all of the blood they were getting via the PDA. Being able to oxygenate well at 24 oxygen(close to room air) though is a great sign.
Thought I would throw in an organ that is functioning very well to make her sound better. :)

Amanda and I had a rough day yesterday. Nothing like being told that your 2.5 week old daughter is having heart failure. She was pretty sick. We notice that we are snapping at each other more and we are trying to work on giving the other person more slack. We each are dealing with the constant stress in different ways. Run of the mill irritations of life seem to be magnified by the stress. They warned us to expect this, so we are trying to recognize it for what is really is. We appreciate all of the help we have been getting with meals and Caleb. It really helps.

Tuesday, March 16, 2010

Today's News

Remember how we said that she was doing really well post-op? Scratch that.

Image via WikipediaSource: http://www.nhlbi.nih.gov/health/dci/Di...

While talking to the doctor today he told us the following:

*Charlotte Amalie's heart had to work a lot harder than any of us had imagined while the duct was open. This caused her heart to become enlarged, which resulted in heart failure.

*Luckily, in neonates (infants), this heart failure is reversible. If an adult had experienced this kind of damage to their heart, it would take years to recover, if ever. But CA should recover in about a week. That's only a few days vs years. We'll take it.

*Instead of the heart only pumping blood into the circulatory system, the PDA allowed blood to be pumped through two different pathways-- one through the circulatory system (Like in a normal body) and one "backwards" through the PDA into the lungs. Because of the circulatory system's inherent blood pressure, the path through the PDA was much easier to flow through. This caused her lungs to become full of fluid. Now that the PDA is closed, blood is only being pumped to the body through the circulatory system and is not flowing "backwards" into the lungs.

*Even though the backwards flow of blood into the lungs has been stopped, her lungs are still full of fluid, which increases the amount of effort required for CA to breathe. Currently, she has been given some medication to essentially paralyze her so that she won't "fight" the vent. This makes it easier for the doctors and nurses to control her breathing.

*Because the PDA Ligation closed off a pathway that blood had previously been traveling through, her blood pressure has been affected. Normally, closing the PDA would increase blood pressure, and it did for a short while. However, because CA's heart is failing, her blood pressure is now extremely low. She is currently being treated with dopamine, which makes her heart contract harder with each beat and epinephrine, which constricts blood vessels-- all to help increase her blood pressure.

In other news, Charlotte Amalie's chest tube was removed today, she had an arterial line placed in her arm and she had another blood transfusion.
Reblog this post [with Zemanta]

Monday, March 15, 2010

PDA Ligation

For those requiring more information, and for us, as parents who will someday want to remember all these things we were told, here's the full deal on Charlotte Amalie's surgery. (No, we still don't know what we're really calling her...)

CA went into surgery at about 10:00 AM. Peter and I met with the CHOP Pediatric Cardiac Surgeon this morning, went over what would happen in the surgery and signed the consent forms. The rest of the team came in about 45 minutes later (they got stuck in traffic coming out from CHOP).

Basically the surgeon made a small (everything dealing with CA is small...) incision on her left side, just under her armpit. He was able to spread her ribs and move the lung to access the duct in the heart. He clipped a titanium clip around the duct and voila! surgery is successful. The whole thing took 30 minutes. The surgeon came out, told us everything went well and that the duct was a moderate size. We did surgery at the perfect time.

Before the surgery, he told us that the biggest risks were damage to a nerve that runs to the voice box (remember when Julie Andrews sued her surgeon year ago? Yeah, he cut that nerve.) The nerve wraps itself around the duct, so it has to be stretched so that a Julie Andrews result does not occur. The stretching of this nerve irritates it, so patients are hoarse for a few weeks. Seeing as how Charlotte Amalie does not make noise, we weren't too worried about the stunted speech aspect. The other risk was tearing of the duct. Apparently, the duct is the consistency of "wet tissue paper" so you can see how it might tear. The surgeon reassured us that this was unusual, telling us that he has done over 400 of these PDA Ligations and has only had it tear 3 times. When it tears, they just sew up the duct and close it with a stitch. How you sew up wet tissue paper, I don't know, but he seemed to think it was no problem at all.

So by 12 noon, we had oo'd and awe'd over our little post op patient enough that we felt we could leave her. She has a chest tube in to allow for any drainage and that should come out tomorrow. I called and spoke to her doctor at 6:00 PM and he said that she was still sleeping. She really does take after her mother :) She's currently taking some medication to keep her blood pressure down and she's still pretty much sedated. Because of that, they've had to play around with her vent settings a lot and that means taking a lot of blood gas draws to make sure the vent settings are correct. So even though she didn't need a transfusion during surgery, she might need one tonight to make up for the blood that they used to check blood gas levels.

(Transfusion for surgery? No. Transfusion for lab work? Heck yes!)

Thank you all so much for your support. Your prayers, your meals, your offers to watch Caleb, have all helped make this scary day much more doable. So we thank you. We thank you all.


Much more to post, but that will have to come later.

Just wanted to let everyone know that Charlotte Amalie did really well during surgery. She didn't have any complications and she was still drugged when we left her, about 2 hours post-op.

I'll write a more detailed summary later, but for now, that's our good news :)

Thanks for all the support!

Sunday, March 14, 2010

2 Weeks!

Charlotte Amalie turns 2 weeks today! Her gestational age is 26 weeks, 2 days.

Her current abilities include: Opening both eyes, woohoo!

We're pretty proud of her!

Friday, March 12, 2010

Prayers Please

Charlotte Amalie has been scheduled for surgery to close her PDA on Monday. The NICU did another echo after putting her on the vent and they saw that the PDA had grown from 1 mm to 3 mm. A CHOP cardiac surgeon and surgery team will be coming out on Monday to perform the operation.

Her doctors are going to try another round of medicine to try to close the duct. The CHOP surgeon will come out to evaluate her on Sunday night. If the medicine has closed the duct then the surgery can be called off.

So any prayers or good vibes our way are appreciated this weekend. If she can avoid this surgery we'd all be better off.


Thursday, March 11, 2010


If you look really closely, her left eye is starting to open. Until now, both eyes have been fused shut.

On the ventilator. Check out how huge her diapers are. And her dark hair. Maybe she'll take after me? Caleb's a mini-Peter, so that would be exciting!

My wedding band on my finger, as a reference.

My wedding band on her arm.

Close up. It slid all the way to her shoulder. Amanda's fingers holding her hand and the blue is a nurse's hand in a glove for size reference.

One Step Back

CA has been doing so well over the past 11 days, we knew it wouldn't last forever.

Today she had to go back on the ventilator. The NICU staff was having a hard time keeping her O2 sats up all morning-- she was just too tired to breathe properly on her own. About 12:30 this afternoon, they switched her back to the vent, took some blood and ran a blood culture.

They aren't exactly sure why she needed to go back on the vent, especially since her bloodwork came back looking pretty good. They are still waiting to get the blood culture back (which tries to identify the exact bacteria that is causing an infection) and it should be back in a few days. They did give her another blood transfusion since her levels were pretty low, but other than that, they've just been letting her do her own thing.

They've stopped her feeds for a few days, and they're continuing to monitor her progress. At this point, she's not "riding" the vent (she's breathing more than the vent 'forces' her to breathe-- this means she's not relying solely on the vent for O2, she's still trying to breathe on her own) which is great. The doctors and nurses keep reminding us that she's gone so long without being on the vent and that she's doing oh so well, especially for a baby her size and age. She really is a miracle baby.

Once I can figure out how to load pictures onto the blog from Aperture, I'll be all over it.

Tuesday, March 9, 2010

March of Dimes

We'll be walking in the March for Babies walk on April 25, 2010 at the Philadelphia Art Museum. If you would like to join our team, you are more than welcome to! Just let me know and I'll send you the information.

If you can't participate in the walk, but would like to contribute, you can make a donation to help our team reach it's fund raising goal of $1000. Just click on the March of Dimes button on the right hand side of the page.


Monday, March 8, 2010

I'm running out of titles already...

Updates, updates, updates.

CA bottomed out at a measly 480 grams (1 pound even) this weekend. At today's weigh in, she was 530 grams (1.17 pounds). Yay!

They took out her umbilical arterial line (UAL) today. This line was used for blood draws and cultures and has a very high risk for infection. She also has a UVL (umbilical ventral line) through which she gets her nutrition and fluids. They are placing a PICC line and will be removing the UVL (again to avoid infection) soon. (Peter thinks they were doing this tonight, I thought they were going to do it later this week... I'm losing my mind, so he's probably right).

They did the echo today but we haven't gotten the results back from the doctor. A CHOP cardiac surgeon has to read the echo to give a final reading. The technician, however, and the NICU doctor said that the duct is still open, but they're waiting to hear from the surgeon whether or not she needs surgery or if she can have it closed by more medication.

She's still pretty picky about being messed with. For 30 minutes after her "hands on care" she was desat'ing into the 50's. (She should be 85%-92%). Once people stopped bothering her, she was much better. However, we did get to take pictures of our wedding bands on her feet and arms today. We'll upload them soon.

On Sunday, she pulled out her Ropogo tube (a tube used for suctioning-- they've been turning off the suction and using it as an NG tube). She's just that ornery. They were able to put in an NG tube and the X-Rays looked like it was in place today. On Saturday, her belly was distended and they had to stop feeds for awhile, but by today she is doing well enough that they have upped her feeds to 1mL every 3 hours. That's doubling her intake!

We'll let you know the echo results when we know.

Sunday, March 7, 2010

One Week!

Happy One Week Birthday little girl. We love you a lot.

Saturday, March 6, 2010

We'll Give Her a B+

Blood Type that is. She's B+.

Charlotte Amalie got her first blood transfusion today. Since she only has a tiny amount of blood to begin with, her reserves get depleted pretty quickly. They have to take blood every 12 hours to check her blood-gas levels (among other things) and even though they only take a teeny tiny amount, she only makes a teeny tiny amount each day. She can't quite make enough blood to keep up with the blood being drawn.

We knew she would need transfusions. It was still sad.

She was pretty pale went I went in to see her today. She is rather picky about the noise level around her on any given day, but she was extremely sensitive to noise tonight. Anytime a baby would cry, her O2 levels (which should be above 85%) would drop from 90% to the 70's in an instant. She just didn't have anything to rely on. Thus the transfusion.

It was the first time she really looked "sick". (I know, I know... but really, she's a pretty "healthy" 24 weeker). It was hard to see her that way, but they started the transfusion and since then her number of Desats (O2 dropping below 80%) has slowed down significantly. So that's good.

And it looks like the medicine to close the duct in her heart is working. We'll get an echo on Monday to confirm, but for now, things look (well, really, sound) good.

The up-side (is there an up-side?) to all this transfusion talk is that Peter {He's a B+ too!} gets to donate blood to be used specifically for her transfusions. {I have A+ blood so I'm out of the running}.

It feels good to be doing SOMETHING for her.

Thursday, March 4, 2010

25 Weeks

Charlotte Amalie turns 25 weeks tomorrow. Woohoo!

Today she weighed in at 490 grams (1.08 pounds). She's only lost water weight, and they expect her to be back to her birth weight 2 weeks after delivery.

We met with her doctor today and went over the "plan" for the next week. We'll continue to have weekly meetings with her doctor and nurse until things start to level out more and then we'll re-evaluate how often to meet. It was nice to have an hour to just ask any question we had in a slow, thought-out way. Usually the doctor walks by, you grab them, ask them a million things and say goodbye within 5 minutes. I'm sure it makes it easier for everyone to have scheduled meeting times to go over everything.

They're mostly focused on her lungs and heart right now. She's taking the motrin to help close the PDA and they are going to continue with that throughout the weekend and give her another echo next week. Hopefully it will all be closed at that point!

At that point, they'll start focusing on her intestines-- trying to get them prepared to digest food. Right now they are priming the gut with small (1 mL every six hours) doses of breast milk, in the hope that they will be able to jump start the digestive process. Hopefully in the next 2-3 weeks we'll be able to do "full feeds" which means they would take out all IV nutrition and feed her only through the NG tube.

That's all for today. Thanks for stopping by!

Wednesday, March 3, 2010

My First Day Home

This is my first post about our little girl. So far, Peter has been doing all the reporting and I'm not sure what is about to be written, but it just might be a big mess of word vomit. Consider yourself warned.

I left the hospital today without a baby. Caleb asked to see the baby in my belly today and it was hard to find the right words. How do you tell a two year old that the baby is no longer in Mommy's belly, but rather is in the hospital? How much does he need to know and how much can he really understand? I'm sure these are questions we'll figure out along the way, but they're our first venture in the land of balancing a child at home and a baby in the NICU.

Originally we had intended on using Charlotte Amalie, and having her go by Amalie. Since her first name in the hospital is Charlotte, everyone there calls her Charlotte. Family still calls her Amalie (or Molly for short). So we're kinda in a limbo land as to what her name will actually be.

Her actual condition is as follows:

Charlotte Amalie weighs 550 grams today. That's only a 10 gram loss from birth.

She's on the CPAP machine, at about 40% Oxygen (room air is about 22% O2). This means that about 20 times a minute a puff of air (that is 40% O2) is pushed through the CPAP into her nose. It helps her to breathe, but it's not breathing for her. The ventilator is a tube that goes down her throat and actually breathes for her. She went off the ventilator after only a day, which is fantastic. The CPAP makes her work harder, and she doesn't have as great of "stats" on the CPAP, but she's breathing and the CPAP is much better for her long term. There are a lot of complications that come from being on the vent for too long, so every day she is not on it is a good day. She'll probably go back on it eventually, but that's just part of this roller coaster.

They also started her on some medication to close a valve in her heart today. She has what is called PDA (Patent Ductus Arteriosus). They can close this valve with medication (very fancy-- it's motrin) but sometimes it requires surgery. They'll echo her heart again in three days and see how the motrin is working and from there they will decide if they want to try another round of medication or if she needs to go in for surgery. The good news is that she's not having any physical presentations of the open duct (rapid heart rate, blood pressure changes, etc)-- they were just able to hear it on physical exam. So hopefully her body will continue to work properly and the medicine will close the PDA easily.

She started taking breast milk last night and so far she's getting 1 mL every six hours. I know, she's gonna be huge :)

Tomorrow we meet with her doctor, the nurses and a case manager in the NICU to go over her care. They'll give us a basic outline of what to expect and when and we'll be able to ask questions and get to know the team better.

That's all folks.