Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Wednesday, February 29, 2012

Probably being admitted to the hospital

Well, Lauren's cardiology appointment was today. She still isn't gaining weight and according to the cardiologist's scale, she's lost 5oz over the last week. The plan was to admit her to the hospital today but there wasn't a bed available.

They've been having us add powdered formula to her breast milk to give it more calories so we're all hoping that works. So far it isn't though. We go back to the regular pediatrician tomorrow to check Lauren's weight on their scale since her appointment with them on Monday. If it's not up significantly she'll be admitted to the hospital, hopefully just for a day or two. The cardiologist thinks we'll need to be admitted. Clearly I want what's best for Lauren, but I wish that could be accomplished 100% at home so our family can be together.

The plan is to increase her dosage of Lasix, add aldactone (another diuretic) and possibly start digoxin (a heart medication) as well. The cardiologist thinks that if we can get her meds straightened around she may eat better and thus gain weight. If not we may have to start some NG tube feedings, which is a tube from her nose to her stomach. I didn't think this would be needed until much closer to surgery so I'm definitely stressed out. We're hoping for a super short hospital stay.

Please keep praying for Lauren and our family. Having a baby in the hospital is not ideal, that's for sure, and we have our 2 year old to think about as well. My husband will still have to go to work so we'll be juggling lots of things to keep life as normal as possible for our little guy as well as make sure I can be with Lauren as much as possible.

Monday, February 27, 2012

Weigh in appointment

Today's appointment was not so great. Lauren didn't gain any weight since last week. She was up 5oz at her appointment on Wednesday but they weighed her with her diaper on.

I have to start fortifying my pumped breast milk with formula. 1tsp of powdered formula per 4oz of breast milk. I'm really bummed about it. It might sound stupid, but I feel like I'm not good enough since my milk isn't enough for her to thrive. I'm sad.

I really hope she gains weight though and am definitely willing to do whatever it takes to make that happen!

Also, there might be a mix-up in her Lasix prescription. For some reason the pediatrician thinks the dosage is too high. I'm not sure why to be honest, she wasn't very forthcoming. I don't think she appears dehydrated at all and she seems like she's breathing a lot better so getting rid of extra fluid has been good for her.

I also did NOT like the med student that was in on the appointment today. When the pediatrician asked her if she heard Lauren's heart murmer she said, "Oh yeah! I would never miss that murmer. It's really loud!" Uh, hello?! Not the best thing to say in front of a patient/parent. I feel like we learned that kind of thing day one in nursing school. Apparently she missed that day of med school.

We go back to the cardiologist,who prescribed the Lasix, on Wednesday and hopefully can get things straightened around.

The good news is that Lauren had a photo shoot today!! I promise I'll try to learn how to add more than one picture at a time so I can share them when we get them back. The photographer, Abbie, did so awesome and is so nice! Check out her photography site/blog at http://a-lloyd-photography.com/Blog/

Wednesday, February 22, 2012

Lauren's first cardiology appointment

We had Lauren's first cardiology appointment today. It went just as expected and there were no surprises! Lauren had an EKG done and they checked her blood pressure in her arm and her leg to make sure they were the same. They were!

The doctor decided to start her on a small dose of Lasix, which is a diuretic. Lauren's breathing is a bit fast and not as deep as they'd like so she's showing some signs of fluid volume overload. This medication will help keep her fluids and electrolytes stable and exactly how they should be. I didn't expect her to need medication this early, but the cardiologist assured me that it's not a bad thing and that they expect symptoms to pop up. She said they would actually be concerned if we got to a certain point without symptoms because it could mean her pressures weren't responding to the hole in her heart. We need the pressures to respond so that surgery can fix it!

We'll be going back to see the cardiologist weekly until Lauren's surgery this summer. That is a lot of doctor's appointments! But it will ensure that Lauren is as healthy as possible until her surgery can be done.

I've been feeling really stressed and a little down about the fact that Lauren needs open heart surgery. It obviously wasn't a surprise, we've known for what seems like forever. But it didn't seem real until she she was born. And I'm terrified to be completely honest. Good thing we have four months to prepare! Please pray for this mama to feel peace and calm about it.

The good news is that Lauren is gaining weight! She's already gained 3oz since her birth just ten days ago! And she gets cuter by the day, obviously. Her big brother Ryan is getting more comfortable with her every day and loves to "help" her "play" on her jungle excercise mat. I can't wait to watch them become the best of friends (and sometimes enemies, they are siblings after all!) and it's been really awesome to see my little man take on the big brother role.

Thanks for reading and we would greatly appreciate your continued prayers!

P.S. Do you like our first photo as a family of four?! Lauren was apparently shy!

Friday, February 17, 2012

First pediatrician visit

Lauren had her first pediatrician visit yesterday! We saw a new doctor in the practice that we haven't seen with our son, so I was nervous.

It went great! Lauren is almost back up to her birth weight. I was worried she wasn't eating enough, but the pediatrician assured me that she's eating fine. And Lauren reassured me by eating every hour last night ;)

Her heart sounds good and the murmer is "soft" for her heart condition, which I think is good? Either way, it's not bad! They also checked her oxygen levels which were great.

It was a really good appointment and Lauren got a clean bill of health! We go back in 2 weeks to re-check her weight and make sure she's still eating well enough. We talked about breastfeeding/vs pumping and bottle feeding. The doctor was very supportive of my wish to breastfeed and was very encouraging! It's nice to hear, a lot of people will just immediately say that babies with Down syndrome can't breastfeed. She did say that Lauren may not have the energy to breast feed full time and take in the correct amount of milk, so she said if I can get Lauren to latch I should breast feed half of the time and give her pumped milk half of the time. That sounds good to me! And as an extra great surprise, Lauren did latch last night and we were able to breast feed for the first time for a couple of minutes!

Ryan is adjusting fairly well to having a baby sister! He helped her put her hat on yesterday and tried to help get dressed today! I've been trying to balance recovery with spending a lot of time with Ryan and taking care of Lauren. It's tough, but I think I'm doing okay so far!

Lauren has her first cardiology appointment next week on Wednesday, so if I don't post before then I will definitely update afterwards!

God bless and have a great day!

Wednesday, February 15, 2012

Lauren is here!!!!

LAUREN IS HERE!!! She was born February 12, 2012 and weighed 6lbs 5oz and was 19.5 inches long. She was born at 6:42 am (after some initial confusion about what time exactly, this is the real time!) with a head full of sandy brown hair! I'm pretty sure the 21st chromosome must be responsible for cuteness because she is definitely extra cute.

My main goal was to be able to see her and possibly hold her before she would be taken to NICU for observation. We were told she'd be taken right away and we'd get to see her a little bit later. We didn't expect her to be able to stay in our room with us and we were told not to expect her to come home with us right away.

Well! Lauren is a rockstar and proved everybody wrong! I got to have skin-to-skin time and hold her while still in surgery. She never left our sight during our entire stay except for when a kind nurse offered to let us sleep for a few hours (I woke up after 2 hours and immediately called and said, "I need my baby!!") and we were discharged home together after a short 48 hour hospital stay!

Lauren had some initial issues with being too sleepy to eat. She wouldn't breastfeed or take a bottle. We were spoon feeding her colostrum before my milk came in, but the doctors said (and I totally understand) that it's not really safe for baby to send her home not eating. Apparently Lauren didn't like the sound of that and she perked up after about 12 hours and is an eating champion! Breastfeeding is still an issue but she's taking pumped milk by bottle very well!

Her echo was done in the recovery room so she didn't have to be away from me. They did find another small hole in her heart but it doesn't affect the surgery timeline at all and was not considered a significant change from the fetal echos I had done while pregnant. Her EKG was okay. She passed her newborn hearing screen too!

I am SO thrilled to have my perfect beautiful baby home with me. I still can't believe it's real life that she's here and doing so well! We have our first pediatrician visit tomorrow morning and our first cardiology visit next Wednesday the 22nd.

It might sound strange, but I was very worried that when she was born I wouldn't see Lauren, I would only see Down syndrome. It's basically exactly the opposite in reality! Now that she's here it's really such a non-issue so far. It's very comforting how similar this whole experience is to when I had my son. And Lauren and Ryan look SO MUCH alike! It's awesome. And "they" say people with Down syndrome don't look like their families! Not true.

Big brother Ryan is adjusting fairly well, for day 2 of life with a new sister. Hopefully they'll become the best of friends :)

Thank you all SO much for all of your kind words, thoughts and prayers. They have really meant a lot to me and I truly believe in the power of prayer, proved by the fact that I actually have my baby girl home with me!!!

I look forward to sharing Lauren with all of you!

Thursday, February 2, 2012

"Boring" update

How much do I love that I have a boring update?! A lot!

I had an OB appointment today, along with my usual non-stress test. Lauren looks great! We're still set for delivery on February 17th...15 days from now!!!!

Want to know the best news?!

I asked my doctor how things would work right after Lauren is born. If she's breathing okay and her apgars are good, will we get to hold her for a while before she's taken to NICU for observation, echo, etc... My OB said that we can expect for her to be able to go with us to the recovery room and we should be able to have a few hours with her before they take her for her tests! YAY!!! I know it's not a guarantee, but the thought of getting to snuggle her pretty quick after she's born is SO exciting.

And he said that if we make it to 39 weeks we have a much greater chance of her getting to come home with us when I'm discharged instead of having a longer NICU stay. Please pray that happens, I want nothing more than to be able to take her home right away. So as much as I feel ready to be "done", I really hope baby Lauren can hang on until the 17th!

Also, I finished the pictures to hang on the walls in her nursery, with the help of my sister and a good friend! (Please excuse the left over cereal in the picture, breakfast can get messy with a 2 year old!)

Things are going really well. Thank you again for all of your prayers and kind thoughts. I'm going to have a daughter soon!!!!