One home! One Superman to go!

Another 2 weeks and time flies. The past couple weeks have been crazy in the Richards household. Madaline is home and things are starting to get crazy!
Since the last posting we have had a lot of changes around here. After 64 days on Wednesday, November 10, 2010, we brought our wonderful baby girl home from CHOC hospital. Oh, how bittersweet it was to have her come home and leave Ethan there to continue to get better.
Speaking of my Little Superman, lets start with him this time. The past couple weeks have been an improvement for him and we couldn’t be more proud of how much strength he has. On the last posting I made, I mentioned that Ethan might be given a steroid to help him get off the ventilator. As a reminder the steroid is an anti-inflammatory medication that helps when a baby needs to move forward in getting off higher oxygen support. Since he is over 2 months old now (hard to believe), it was time to start considering these measures. There are serious side effects to doing this. However, there are side effects that are just as serious if not more if they keep him on the ventilator. Again, there is no safe or easy answer to choose from. Nonetheless, he was given the steroids and on November 8, 2010 (Brady and My 7 year anniversary), Ethan was extubated and it has been successful. In fact, he went from the CPAP machine that is gives more support in the way of extra breaths in case he doesn’t take them, to the Bubble CPAP which gives even less support and he is doing the breaths himself. It just gives Continuous Positive Air Pressure (CPAP).
Another accomplishment for Ethan is his feeds. He has been tolerating the volume of feeds as they have been increased over the past couple weeks. He is now eating 29 cc’s every 3 hours. That equals almost 1 ounce, or 8 ounces in a day. What a big boy I have. Since he has been improving so much, he has also graduated from his PICC line and it has been removed. This “Long-term IV” is no longer needed. The longer they keep it in, the more at risk he is for infection, so this is a relief as well. As of last night, he weighs 3 lbs, 10oz. While this is awesome, I want to remind everyone that he is still retaining fluids so it isn’t entirely accurate. However, he is gaining weight. Yesterday I walked in to see him for a visit and they had put a Onesie on him. Wow! This was the first time I had ever seen clothes on him. What a handsome boy.
It’s so wonderful to share this improvement with all of you. Sounds funny but it’s hard to say because I don’t want to jinx it. He is doing so well, and I don’t want this high in the roller coaster to take a turn down, so please keep up the good prayers. In return I will continue the good news. Deal? Deal!

Now onto an “at home” girl named Madaline! So far, so good. She has been home for 8 days as of today and doing well. Her mom (me), isn’t getting much sleep. But as people keep saying (and I really hate when they say this…. It’s very annoying), “Welcome to Motherhood”. Brady and I have seemed to come up with a system that, so far, has been working. I do her 9pm, 12am feeds and he gets up for her 3am feed. Then I get back up at 6am and the day begins again. It works for now, but we will see if the system needs modification once I go back to work.
Couple minor hiccups since she’s been home. She has a diaper rash that she has had since she was in the hospital that I can’t seem to shake. I have tried so many different remedies, and so far nothing has helped. She seems to have very sensitive skin (just like her heart... Hehe!) Also, she has had REALLY bad gas. Poor little girl cannot seem to get comfortable. We have tried to stretch her legs out, do tummy time on a heating pad (on the lowest setting of course), etc…I didn’t want to use Mylicon (anti gas meds), because it can cause acid reflux, but I have had no choice in the last few days. She is so restless, so hopefully she can get some relief from that. I just don’t want to use it on a long-term basis.
As far as her feeds are concerned, she has been sent home with a need for a mutli-vitamin and fortification on the milk she drinks. I have to add special formula to her milk she drinks so that it adds extra calories to her diet since she isn’t gaining as much weight as they would have like to see when she was in the hospital. I told Madaline to soak up the extra calories while she can. With that being said, she has had a little bit of a hard time eating her full feeds. She starts off really good with her sucking, then tapers off and gets tired towards the end and doesn’t finish. Not every time though. It’s getting a little better. I talked to the doctor about it and they said that as long as she is gaining weight, then there is no worry. With all the extra calories she is getting, who knows she may be my little chubby bunny in no time. As of Monday, she weighs 5 lbs, 15 oz. Not a bad accomplishment from her birth of 2lbs, 9 oz. What a proud mommy I am.
Monday was her first visit with her new pediatrician Dr. Angela Hermann in Orange. I liked her a lot and she seems to be very nice. She came recommended from the doctors and staff at CHOC, and she use to work there. Madaline will have another follow-up appointment this Monday to check her weight and the other small things we are concerned with. She will also have a follow-up eye exam next week to make sure that her eyes are developing well. Ah, the new life of doctors’ appointments and hospital visits. I wouldn’t have it any other way though.

On Saturday, November 6th, we had our shower, and boy was it fun. We were s blessed to have our very good friends and family there to support us. Thank you again to my mom and sister for there hard work. It certainly showed. We had a taco guy, margarita machine, toys on each of the tables for the babies, and a candy station to top it off. I will post some pictures onto my Facebook page for everyone to see what a wonderful party it was. We received some great gifts as well. Thank you, thank you to everyone who came and shared in the celebration with us.

Since having Madaline home, we have been blessed to have a couple people bring over some meals for us. and some yummy ones at that. Nana's chicken fried steak was wonderful and Andie's chicken tortellini soup was soooo good. It has helped us out tremendously not having to cook right now. A couple people have asked about helping out by providing some meals for us. Thank you so much. I think my sister Stephanie is going to coordinate that for us since I am still bouncing back and forth from home to the hospital so please contact her in a couple days if you are interested in helping. If you don't have her contact info, please contact me and I will give it to you.

Well, as time permits, I will update everyone again. I like to think that it will be sooner than the 2 week span I have been doing, but we'll see. Thank you everyone for continuing to check back for updates and for praying for the little ones. Your help has brought my little girl home and improvements to my little Superman. God Bless

Picture Time!!!! (My favorite part and I am sure yours as well).
This is Madaline being packed up to come home from the hospital. Yeah!

Madaline after her first bath at home. She did okay. Little cold for her liking.


Ethan off of the CPAP machine. Awesome isn't it!
Ethan on his CPAP machine. Doesn't he have the sweetest eyes ever?!

2 Weeks too long!

Well hello again from the Richards family. I can’t believe it has been 2 weeks since the last post. Just after I said that I would try to post updates more often, I completely drop off. Sorry about that folks. Well, let the roller coaster ride begin again. Please… keep all hands and legs inside the cabin during the remainder off the ride.

Lets begin with Madaline. Every 2 weeks they have to change the babies’ incubators for hygiene reasons and Madaline was due for a fresh clean one. Since there was not an updated one available, they gave her an outdated ugly one that was hard to move her in and out of. Not to mention, it gave her more room to possibly roll around and hurt herself. Well, leave it to me to make a stink long enough for them to decide that Madaline was ready for a big girl CRIB. That’s right folks, she has graduated to an open crib now. She has been doing well in it and seems to be maintaining her body temperature as long as she is swaddled and wears a hat most of the day. Her weight as of tonight was 5lbs, 4oz, which leads me into her feedings. The staff have put her on a feeding schedule of bottle every other feed and the rest by feeding tube. When she has been taking her bottle she usually takes the whole thing by mouth. If not, they just give her the remaining amount by feeding tube. However, in the last couple days she has been showing us signs that she wants more feeds by mouth. When she gives us the “Cue”, we feed her the bottle even if it is not on her normal schedule to be getting one. This is called “Cue Base” feeding. On top of that we have also been doing a little breast-feeding. Yesterday she took half of her feed by breast and the rest by tube. It is very exciting to see how well she is progressing. One thing she is not enjoying is the vitamins and extra calories that they are adding to her feeds. They can cause really bad gas, so she has been a little uncomfortable lately. It’s sad to watch her squirm around when she is feeling like that.
Because Madaline is doing so well, it looks like she may be coming home in a week or so. Once she is taking all of her feeds fully by bottle or breast, she will be ready to come home. There has been so much we have been trying to prepare for, it’s been really crazy around here. The things that she will need to get done before she comes home are: Another eye exam scheduled for tomorrow I believe, and ear exam, the “Car Seat Challenge”, vaccines, and of course all her feeds. I believe she will pass both the eye and ear exam with flying colors. The other day I asked the development team to make sure she would be getting a hearing exam. Karin elevated her above the bed with an open palm under her head and started calling out Madaline’s name to her and she turned her head towards the sound. She turned her in the other direction and did the same thing and again Madaline turned her head towards the sound. It was amazing to watch her do that.
The “Car Seat Challenge” is a procedure they do at the hospital where they have us bring in the car seat that Madaline will be using. They set her in it for at least a half hour (or the length in which it takes you to get home from the hospital), to make sure that she can handle the positioning without any issues. This insures that she can tolerate the ride home (not that we live far from the hospital, but its good for her to do).
Brady and I also have to prepare ourselves by watching a couple videos on car seat safety and sleeping to make sure we understand the safest ways for her to sleep. As well, I am going to attend an infant CPR class tomorrow morning and we will also schedule a car seat safety class. We also (along with anyone that will be coming to visit her) will need to get the flu shot. Both Brady and I have already been vaccinated for the Whooping Cough, but we are asking anyone that wants to come see her after she is home to make sure that they get these vaccines. The last thing we need is another trip to the ER from a cold or flu after she gets home.
While she remains at the hospital, we get to bring in clothes for her to wear. I went out and bought her some Preemie clothes to dress her up. I figured that she should get as much use out of those clothes as possible, and good use she is getting. But she is growing out of them pretty fast already. She looks so darn cute! The other day, I came in to find that they put a bow on her head. She looked so sweet; I just wanted to kiss her silly.

Now for an update on Ethan. Last time I had posted that he had started the Video EEG to look at his brain waves for a longer period of time. As a reminder, this was a test to see if his brain activity is normal and at what stage in his development his brain is in and if it is the correct age. They kept him hooked up for about 48 hours before disconnecting him. Poor little guy had wires surrounding his head and on his chest as well. He was a trooper though and tolerated it rather well. It took a while for them to get the results back. After much anticipation the doctor came and said that the level of activity that he has is presenting as a 32 week old baby (and he was 35 weeks at the time), and the activity and movements that Ethan is having that we thought might be seizures are not. This was awesome news to get! But it also leaves us with question marks. If it’s not seizures, what is it? And will his brain catch up to the normal age he should be at? Hopefully it is just preemie activity and he will grow out of it soon enough. Nonetheless we were able to soak up the good news for a couple days before Ethan got ANOTHER infection. This poor little guy can’t catch a brake. It was hard to tell where it was coming from and he had just started gaining momentum on his feeds before they had to stop them once again and give him antibiotics. They just started him back on feeds a couple days ago. But of course he is back at the beginning with minimal amount.
On Monday Ethan also went in for his MRI to look at both his brain and his spinal cord. It was a very scary morning all together. CHOC does not have an MRI machine, so Ethan had to be transported over to St. Joseph’s for the procedure. On top of that, they had to sedate him it. I can’t put into words how stressful of a day that was. After all was said and done, Ethan did what he has been doing best, and pulled through. The doctors said it would take a day or so to get the results back, but we ended up getting them back the same day. NORMAL!!!!! The Lord has once again blessed us! At this point Ethan is not showing an abnormal development in his brain. Also, his lower spine does not show that he has Spina bifida or a tethered cord that would restrict his lower extremities or leave him paralyzed. At this point some of the problems we are seeing, we are just going to chalk up to prematurity and growth restriction. Once again, all of our prayers have helped him pull through.
So what’s next? Well, we need to get his feedings going again. This is so important for his bone development and all around nutrition and growth. At this point, his bones are so fragile, anything could cause a fracture. Also, since he is still on the breathing machine, we need to start considering steroids as the option to help get him extubated again and onto the CPAP machine. The steroid helps with any inflammation, but has its own side effects we are concerned about. At this point though, the long-term problems he could have from being intubated for so long, out way the side effects of the medication. It’s also not a guarantee that it will work. So, once again I turn to my family and friends and ask that you please pray for our Little Superman to give him the strength to pull through and to start progressing on his feeds and get off that stupid breathing machine and onto the CPAP.
On the calendar of events, we just had Halloween. I did dress the twins up and they looked absolutely adorable. Ethan was, of course, Superman and Madaline was a Cupcake (inspired by her crib bedding and by a hat that was at the hospital). I have posted some photos for everyone to see.
This weekend is our long awaited baby shower hosted by my mom and sister Stephanie. I can’t tell you how excited I am and how much I am looking forward to seeing everyone. Who knows, I might even have a drink from the margarita machine. (Mmmm.. No salt please.)
I would like to take a moment now to share some sad news. Our much-loved Uncle Tom (Brady’s uncle; Tim’s brother) passed away from pancreatic cancer last Monday at his home in Dana Point. He was a wonderful person who was very loving and will be missed immensely.
And now…. Pictures! I also uploaded some pictures from the CHOC walk onto my Facebook page. If you aren't a "Friend" request me to view them. I will try to upload some more pictures of the twins soon.


Ethan's costume was a Build-A-Bear outfit! And it's still way too big on him