One more flight for my Little Superman

This Saturday was the worst day of my life. On December 11, 2010 at 12:06pm my sweet, loving Superman took his final flight to heaven. Here are the details of our final day together. I apologize if it’s too detailed (or minute-by-minute). I don’t know how much everyone wants know.
I came into the hospital on Friday afternoon to snuggle with Ethan for a few hours. We sat and gazed in each other’s eyes while doctors, nurses, friends and family came into the room to share in their love for him. I played some music (Josh Groban and Andre Boccelli) and I tried to sing a little to him. In the afternoon I talked to the nurse and asked if there was any way I could spend the night with him. At this point I figured the worst they could say is no. I wanted to spend every last waking minute I had watching him, kissing him and telling him how much I love him. Brittany (Ethan’s day nurse-and a great one at that) said that wouldn’t be a problem at all and grabbed some pillows and blankets to get ready for the rest of the night. Stephanie and Alix grabbed some stuff from my house for me and headed over to visit for a while. They brought Madaline with them to meet her brother for the first time outside mommy’s belly. Wow! What an experience that was. I can’t tell you how ecstatic I was to have BOTH my babies in the same room with me for the first time. We decided to do a mini photo shoot with the twins. We undressed Madaline and put her in bed with Ethan and watched as they sat calmly with each other as if that was exactly where they needed to be. It seemed so natural to them, as if they never left each other. Madaline lay calm (for the most part) and Ethan had his eyes open the entire time with his oxygen level at room air. Not one bell or alarm sounded the whole time. We took a bunch of pictures of them together and then I had the amazing experience of holding both of them at the same time for the first time. The words “Bitter Sweet” can hardly define how I was feeling. Brady came in a little later and held them both as well as tears engulfed him. The pictures turned out great and I have shared a couple below.
After the family left I got myself comfortable. About an hour or so later, Danielle (Ethan’s wonderful night nurse) came in to relieve me for a minute. I stepped out for a moment, came back and she said that he wouldn’t stop shaking the whole time I was gone (which he wasn’t doing when I was holding him). I sat right back down as we watched his eyes roll around looking for me. The nurse was amazed to see such a reaction from him. She put him back in my arms and he calmed down and fell asleep for a while. Danielle and another nurse sat and talked with me for a while and it started to get late. They left so Ethan and I could try to get some sleep, but all I could do was stare at him and watch to see him open his eyes and breathe. Kind of obsessive on my part, but I knew I would never get the chance to see it again, so I soaked it up. 6:15 rolled around and I had them put him back in bed for an hour and a half so I could get a little sleep and freshen up for the rest of the day. After I got myself together we put him right back in my arms. By this time he was awake again and I resumed my repeat talk of how much I love him and I was going to miss him and sang him a prayer to start our last day together.
Brady showed up at about 9:30am with Madaline and we sat staring at our 2 beautiful babies.
10:00am came and a photographer came in to take some professional pictures of all of us as well as Pastor Michael Hayes from St. John’s Lutheran Church to help us get through the next few hours. As the hour went on, Brady and I had the family coming in to see Ethan and wish him love on his journey. In the next hour Dr. Bixby, and the nursing staff came in to brief us and make sure we were ready for the next steps. As if there is ever a right time to start the process, the staff asked if we were ready to begin.
At approximately 11:15am the process began. Ethan at this point had fallen asleep already. They started off by removing any unnecessary IV’s and give him some medication to make sure he was relaxed as well as to make sure breathing was not a struggle. After about 10 minutes or so, they came in again and removed the breathing tube and the feeding tube. I was already crying so hard but found more tears in the back of my heart to cry harder. After a few minutes they gave him another dose of medication as I sat there holding him and crying. The family came in and out of the room to kiss him and say goodbye for now and tell Ethan how much they loved him. All the while the nurses were coming in to check his heart to see if it was still beating. By then, I knew he had passed away in my arms. They called the doctor in one more time to check his heart as she called the time. 12:06pm. And somehow I found more tears to cry harder.
By now, some of Ethan’s nurses had come in (on their day off) to be there for Ethan and for us. They came in to say goodbye and tell him they loved him as well. I sat and held him for a long while because I didn’t want to let him go. I didn’t want that to be the end of our time together. Why him? Why this wonderfully sweet precious boy who never had the chance to do so many things? To be a little boy and run around, say funny things, get into trouble and make lots of friends. I just don’t get it.
After a long while Brady thought it would be best to go and try to get some rest. I set Ethan down for the last time and told him goodbye asking him to please visit me in my dreams. The rest of the day was a blur. I laid on Stephanie’s couch and stared off into a daze. I can’t believe this is all real. Did this really just happen? Brady, Madaline and I went home later that night and I cried myself to sleep.
Yesterday I woke, went to church and spent the rest of the day with my mom, Stephanie and Alix. I spent the day trying to keep my mind busy, but still feeling like I needed to call the hospital and check to see how Ethan was doing. I did pretty well until I got home and literally fell to the floor and started crying. Brady picked me up and tried to encourage me that Ethan was in a far better place, running around and doing all the things he would have never been able to do here with us.
We woke up this morning and we went to make all the arrangements for Ethan’s service. Since the mortuary is in the Orange Circle, Brady and I had lunch and walked around for a little. I spent another day trying to keep my mind busy and doing a little “Retail Therapy” / Christmas shopping. I am just going to say, I will be happy to play the role of The Grinch and Scrooge this year. I am so not in the holiday mood.
Well, after all is said and done I am trying to keep a somewhat positive attitude. I am grateful that the process was not drawn out and that he was given back to God in a swiftly manner for both his sake and ours. I hope you don’t think that’s bad to say.
I also have to say that I am so grateful that we were given the blessing of 3 months with this wonderful boy. Some people aren’t given that opportunity and I realize that we were very fortunate. As hard as this all was, I wouldn't have given it up for the world.
I can’t close this posting without recognizing and giving thanks to the wonderful nurses that Ethan had during his time at CHOC. I am sorry if you don’t want your names mentioned but, Lindsay, Danielle, Brittany, and Andrea (and Karin, Ethan’s DT)... If you are reading this, I can’t tell you how thankful Brady and I are for all your help. You KNEW Ethan and showed him so much love and took care of him when I couldn’t be there. You took care of ME. You listened to me cry, answered my many questions. You supported and guided me through this. And for that I am eternally grateful. I miss all of you already and feel like not only have I lost a son; I have lost a second family. I truly hope I can stay in touch with you as I have grown to love you all. Thank you.
SERVICES:
We have made arrangements to have a memorial service for Ethan this Friday, December 17, 2010 at 3:30pm. Followed by a reception. The service will be held at St. John’s Lutheran Church in Orange, CA. The address is 185 S. Center St., Orange, CA. 92866. We invite you to come and share in the celebration of Ethan’s life with us. If you are questioning whether you are welcomed or not, know that we want you there. I know that my Little Superman has touched a lot of people’s hearts in a very short amount of time and we welcome the celebration of love with friends and family members alike.
Pictures:
A few last pictures of my sweet boy

The Hardest Decision

I am not going to sugarcoat it... This has been the worst 3 weeks of my life. This blog will be an update entirely on Ethan. As I wrote in the last posting, I didn’t want to jinx all the wonderful things that were going on with Ethan. But somewhere along the way, something happened.
The week before Thanksgiving started well. We discussed “Sprinting” Ethan off of his CPAP machine since he was doing so well on it and he was showing a lot of improvements. This is where they take him off the CPAP and put him on straight oxygen for a short period of time to see how well he responds. They gave him a bath one night and he had the CPAP machine off for a half hour and just gave him oxygen and he did very well. He was a bit tired after, but overall did well. He was also at full feeds and the doctors felt we needed to add more calories to his diet to help him gain more weight. Then the Wednesday before Thanksgiving Ethan had to have some blood work done to start figuring out some of the other issues we needed to tackle. He didn’t seem to tolerate that very much and started having more spells. My first thought was that he looked pale and needed another transfusion. Since he was starting to produce his own blood cells, the doctors wanted to wait to do this. If they gave him another transfusion too early, then it would send a message to his body not to produce more blood cells in the future. Well, the spells continued and he ended up having to go up on the CPAP machine to a higher support until that Saturday night when all started going wrong.
I did my normal checking in and found out that Ethan had coded in the middle of the night and they had to do chest compression to bring his heart rate and breathing back up. They kept an eye on him the rest of the following day. However that Sunday night he coded again 2 more times and they felt the only way to save him was to re-intubated him again. Also they stop his feeds again in fear that it wasn’t making the situation any better. BACK TO SQUARE ONE! All that he accomplished got flush down the toilet.
Coming out of the holiday weekend, I talked to the doctors and we decided further airway tests needed to be done to figure out what was causing all of this. Also, we needed to get a better look at his hips since we weren’t seeing major improvements in his therapy. In the meantime, he has been doing well on the ventilator. Last Thursday they did an ultrasound of his hips and Friday they did a couple procedures to look at his airway.
The results from his ultrasound showed that Ethan has subluxation of his hips with dislocation as well. In talking with Ortho, they stated that physical therapy, rehab, splinting his hips and many other procedures is lower on the scale of needs. They can do all of that. However, it will take several years of therapy and there is no guarantee that it will work or that he will even be able to walk. Also, it will not be easy on him and he will be in pain.
Then the doctor gave me the test results of his airways. In his left nostril he has a lesion that was blocking he camera and they couldn’t get it down far enough, so they were going to get an Ear, Nose, Throat doctor to come look at it. Babies breathe through their nose, so that could be one of the reasons he is having a hard time breathing. In his throat the pictures showed that his airways were extremely floppy and that very red with irritation. In his lungs showed a white substance, which was more likely milk, which means he is having severe reflux. Then at the base of his lungs his airway was extremely floppy and would clamp down at any stimulation, which doesn’t allow air to get in.
What does all of this mean? Well, he would need a tracheotomy for his breathing and a feeding tube surgically placed in his stomach for food. Both of which he would have for several years and again, there is no guarantee that this will fix the issue. If we proceed with this decision, he is going to need 24/7 nursing and training care when he comes home to us. Not to mention of course the pain he will be in.
After hearing all of this I thought it would be best to get all of the specialist, the doctors, nurses and staff together to put all the pieces together. There is so much care that he is going to need and we needed to figure out what is going to be best for Ethan. Ultimately we do not want our son living a life of pain and suffering. So we had that meeting today and it was the worst couple hours of my life.
They started out by telling us that Ethan has an abnormal chromosome in his DNA. Now, this would not be a problem if either Brady or I had the same chromosome in our genes. To run this test would take another week to 10 days. Then neurology told us that his head is not growing which means that his brain is not growing. The reason our heads grow is because it is making room for our brains. Also his muscle tone is very bad which leads them to believe that he has severe Cerebral Palsy. He has a delay in his reflexes and his movements are entirely abnormal. From their diagnosis they feel that Ethan would not have any quality of life. He will not comprehend normal activity and will be confined to a wheelchair. Lastly the Pulmonogist said that based off his evaluation doing a tracheotomy would probably not help his airway issue. If his brain is not growing and functioning properly, it more than likely will not send a message to the lungs to grow on top of the fact that he needs constant pressure in his airways to keep them open. This kind of ventilation support cannot be done in a home setting. And lastly, his leg issues that I previously mentioned.
After all the doctors stated their case it was said to us that the entire medical team feels that it would be in Ethan’s best interest to discontinue care. He does not show that he will have any normal life and it will be filled with lots of struggle and far too much pain. Brady and I kind of felt that this meeting might bring us to this kind of result. We have been talking and crying the past few days about what is best for Ethan. I don’t want to play God and make these kinds of decisions. I don’t want to, I should have to be the one to close those beautiful big eyes for the last time. We just needed a sign from God that would help lead us in the right direction and that direction presented itself to us today. We believe that the best thing we can do for him is to give him back to God….
If you are crying right now, don’t worry. I am too. I can’t tell you how hard it is to write these words and bring you this news. He is my little Superman who has fought so hard and been so strong, but we can’t let him suffer his whole life. I never would have imagined that we would have to make this kind of decision.
We are still working on the details of what will happen but the plan is for us to surround Ethan with our love and support on Saturday and allow him to pass. I can’t tell you how hard this is. At this point I am at a loss for words. I will try to keep you updated to what is going on. Please check back daily.
In the meantime, please pray. Pray that my little Superman knows how much we love him and for the strength and courage. I know that God is gracious and merciful and will accept my precious boy with open arms and an open heart. I just hope he gives us the support we need to get through this. Thank you.
Here is a couple pictures we have taken in the last day or so. He is so precious….

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

1 week later

Sorry it has been so long since my last posting. Some of you have wondered if there was something seriously wrong. Not really. I just have been so busy and caught up with being at the hospital that by the time I get home, it’s either extremely late or I am extremely tired.

I want to start off the message by thanking everyone that showed up for the CHOC walk Sunday morning. I apologize if you don’t want your name listed here, but I want to recognize the wonderful turnout we had. Special thanks to:
Grandma Chris, Aunt Stephanie, Uncle Dave, Aunt Casey, Uncle Kyle, Jenny, Bruce & Erin, Lisa & Jeff, Rob, James, & Kathleen, Tiffany & Shawna.
Also, thank you to everyone who has made donations to support our team. You made walking that much more fun and motivating. It meant a lot to Brady, the babies, and myself.
We had a lot of fun. A little early for us all, but it was for a good cause. I think we will try to make this an annual event, so if you missed it this year, try for next year. We got a lot of good pictures for the babies as well. I will probably post them of Facebook. I think that is gong to be the easiest way.

We will move on now to my sweet babies….
Madaline continues to do well. Her feeds have now been increased to 40 cc’s every 3 hours. That comes out to approximately an ounce and a half. On Monday they needed to stop her feeds for about 12 hours so they could give her a blood transfusion. They came to the conclusion that it will help with her heart rate and keep her from burning calories that she could be using for weight gain and energy. Her weight as of yesterday was 4lbs. 3oz. They stop the feed to avoid other medical issues like NEC (which is an intestinal infection that she had before. It can be extremely dangerous.)
We are continuing with the attempt to breastfeed. Today she had 3 cc’s by breast and the rest by her feeding tube. She tuckers out pretty easily by doing this, but she will catch on. She has been doing great with her bottle-feeding, which she gets 2 times a day. The last feed she had by bottle she took 21 cc’s. Surprisingly the muscles you use for breast and bottle are different, so she has to learn both. There’s so much to learn for both techniques, it amazes me. It is different for preemies compared to full term babies, so anyone who watched both babies is going to have to learn how to feed them if I’m not around.
Monday night was a big night for Brady. It was his first time giving Madaline a bath. He seemed to enjoy himself until he lifted her bottom to clean it and found that she had a little surprise for him, a #2. Good job sweetheart! That’s my girl!
She had another eye exam today so make sure her sight is still on track and they are. She’s doing well. She may even be home within 3 weeks or so, if all continues to go well.

Now my little man… There is so much to try to remember, it’s hard to keep up. Friday the doctor came to talk to me and told me that Ethan was doing better than he thought and was anticipating taking he breathing tube out sometime during the weekend. At that point his biggest concern was his feeding. He really wanted to focus on getting his feeding volume up so that he could start gaining some weight and get off the IV medications since they can be so hard on the liver. Especially since it is an immature one. Well, after the walk on Sunday, Stephanie and I went to the hospital to visit the babies. They were planning to take Ethan’s breathing tube out since he was doing so well. The plan was to put him on CPAP machine again. We stuck around by his bedside to watch them extubate. Sadly it was not successful. They took the tube out and he immediately seized. They tried to bag him, and his air way was completely closed and they couldn’t get air down to his lungs. They had to put the tube right back in. It was pretty scary to watch them have to do that for the second time. This time was more emergent though since they couldn’t get air into his lungs. Because of all the trauma that caused for him, he had a very rough night and may have had more seizure activity and they had to give him Ativan to help him relax. Also, because of all the issues that on Sunday, they discontinued his feeds for a few days which has now put us back to square one. It feels like we try to make one step forward, then we move 2 steps back. The next step may be to try to extubate again when he is healthy enough to do it. If that is not successful, they may give him a steroid to help his throat muscles strengthen. The problem is that the side effects to the medications is Cerebral Palsy, which is already a concern that we have for him. Hopefully we will not have to travel that road. So please keep up the prayers.
In the meantime, we are still waiting to do the MRI. It will probably happen sometime late this month or early next month. Not soon enough though. They did decide to start the video EEG today. He has a bunch of wires hooked up to his tiny little head right now measuring his brain activity. I feel so bad for my little man. Ay least it’s not invasive. They want to see if some of the movements he is having are normal, or if they are seizures. I really hope everything is ok. We also received his chromosome test back and it was normal. At this point we have to talk to Genetics to see what the next step is. He also had his eye exam today. The doctor said his eyes are looking okay for his age and what he s going through. He will probably have them checked again in a couple weeks to see how he is progressing.
This is just a taste of all the things going on. During the day at the hospital, I am visited by so many different people, from different departments, and we have to address different issues with both babies. It can be very hard to keep up with.
Halloween is coming up and I am still trying to decide if I am dressing up the babies. I have a couple ideas in my head, so stay tuned.
As a side note, please forgive me for my spelling or grammar. I am usually writing this late at night and I get too tired to proof read. Don’t hold it against me

I will try to stay up on the blog more often than I have this past week. In the meantime, I am asking that you please continue praying for Ethan, Madaline and all of the people that are there taking care of them right now.
Thank you and God Bless!

Suck, Swallow, & BREATHE

Hello all.... There is lots to share (including pictures!). So sit back relax and grab a cup of coffee.

We will start with Madaline first. She is doing well. They took her off the oxygen after a day or so and she is doing okay. Her heart rate continues to be on the higher side still. They think it may be because she is anemic. They don't want to give her a blood transfusion just yet though because her body is starting to produce red blood cells. If they gave her a transfusion, it would send a message to her body not to produce the red blood cells which would make it harder in the future for her, so they are trying to hold off as long as possible before they do another one. It may happen in the next couple days though. Madaline's feeds continue to increase daily. she s getting about 24cc's every 3 hours. What they are starting to do now is add vitamins and extra calories to them so that she can gain weigh. This is normal about this time. She is not liking the extra vitamins that they are putting in though. She spit up on me yesterday (which required my first wardrobe change due to baby-spit-up) She also has been a little more gassy (which she gets from her father).
Today we tried to breast feed. It wasn't very successful because the therapist and I got into her room a little late since we were handling some stuff with Ethan. she fell asleep right when we started, But there is always tomorrow. In fact, we might try the bottle tomorrow since she will have to learn both. When they are trying to teach babies to eat there are 3 components that are necessary for the action of eating. Suck, swallow and breathing. All 3 of these things must be established before she can learn to eat. We take it for granted, but its something we have to do as well.
She also had her PICC line (long term IV) removed today. Hopefully she will not need it for the rest of her stay at the hospital. They try to remove it as soon as possible to reduce the risk of infection.

Ethan is showing some signs of improvement from last Friday. They doctor decided move put him on a convention breathing machine today. This is one step down from the other machine. Hopefully he will respond well to it and continue to improve his respiratory state. When they were moving him to the other machine, he has his eyes wide open. We got to lock eyes for a few minutes while they had is incubator open. It was nice to see him close up instead of through the clear incubator.
I had a meeting with one of the doctors a couple days ago and he is not sure what happened last week that would have triggered his downward spiral. However, the tests that were done for infection came back and were mostly negative. Because of that, he was taken off of a majority of his meds and kept on just 1. Since they did that, they were able to start up his feeds again. He is only getting 1.1cc of milk every 3 hours, but like I have said, some is better than none. His lungs are also showing to have improved and aren't looking as "wet" as a few days ago. In talking with the doctor I asked if he thought it might be pneumonia. He said that they aren't sure since they symptoms for that present themselves like some other issue that he could be having. However, they are treating him as if that is what he had. (Maybe I am a doctor!)
We have also been trying to get him back on track with his physical therapy. the last few days he has been very touchy, but today he tolerated it pretty well. He is still retaining a lot of fluid though, and hopefully the therapy will help with that.
Onto the big stuff...
Ethan is still having some form of seizure like activity. It has been happening every other day of so, but they are giving him medication that help control them.
Brady and I met with the doctor today to talk about what the next couple steps for Ethan will be. He is glad to see that there is improvement from last week, but reminded us that by no means is he out of the woods yet. Pending that Ethan remains stable and/or shows signs of improvement, they are going to do another EEG called a "Video EEG". It tests his brain waves over a 24 hour period of time versus a 20 minute period which they had done before. This is the test that they did that they told us that he has very abnormal brain activity. Also, they will plan to do an MRI of his spine and head by the end of the month. It will be hard to wait that long, but that's all part of the roller coaster ride. On top of that they want us to keep in mind that because he is not showing signs of major improvement in his legs, there is going to be a chance that he has cerebral palsy. At what level is still unknown as this is all speculation. For now, they just want us to keep that in mind. So again, there could be developmental problems as well as physical ones. But everything is up in the air still. they also did a chromosome test last week that we are still waiting to hear the results on.
Through all of this, I still look at him and think he is just perfect. He has the sweetest eyes and cutest nose. He even has a little pouting lip when he isn't happy. I'm so in love!

Picture time!
We are going to try things a little different this time.

From right to left:
Ethan's Diaper, Madaline's First Diaper, and a Newborn Diaper
From right to left:
Ethan's first Pacifier (which he has on;y used once so far), Madaline's First Pacifier, and a regular size Pacifier
This is there feeding amounts (a couple days ago). Ethan's is on top and Madaline is on the bottom. They are fed every 3 hours.

This is a picture I got of Ethan today.
Ethan's feet
This is Madaline showing us her "Model Lips"
Madaline and I doing Kangaroo Care

A lot of prayers and a little change

Well this weekend has been a little more quiet.
Ethan is doing a little better on the breathing machine since Friday night. The oxygen level and settings have gone down a little bit(which is good), But we still have a long way to go. When I went to visit a couple times yesterday, Ethan was extremely touchy. The minute I put my hand on him to let him know that we were there, he started to DSAT. So he really wasn't feeling up to being touched right now. It's like when you are feeling really sick and sore, then someone comes to touch you and it hurts. That's kind of how it feels for him. It makes it hard as a mom because you want to touch him to let him know that you're there supporting him, but he just can't handle that right now. Hopefully it will continue to improve. We have to make up for a lot of steps backward, so this is going to take a while. He is going to continue to get the antibiotics for a least 14 days, so he won't be able to have milk the entire time. They also had done a stomach ultrasound and chest x-ray to make sure the infection that he hasn't started to attack his major organs. So far so good. His lungs are very wet though (which means a lot of fluid), which would make me think he has pneumonia, but I'm not a doctor. Hopefully we will get results from the other tests that were done to help us find out what type of infection he has.

Madaline is doing pretty good. Last night we did another session of non-nutritive feeding and she did very well. I can't wait to report to the developmental staff (Karin) about her progress. Her heart rate has been a little high the last few days. They have been keeping an eye on it to make sure nothing else would indicate a problem. But the nurse today decided to put her back on the nasal cannula to give her a little more oxygen. Her heart went back to normal rate, so they are considering keeping it on for a few days so that she doesn't waste extra calories working so hard to breathe. It isn't a major concern at this point. We will just keep an eye on it.

We have been getting a lot of love and support in the last few days from all of you and it has been helping us get through things right now. It's so hard to find the right words to say or show how much it all means to us. All I can think of is THANK YOU. Thank you for the emails, the calls, the hugs, the shared tears, and coffee cake (Thanks Jenny). We have had the support of Brady's and my family coming down to the hospital to just sit in the lobby, and it means a lot. Your prayer has been very powerful this weekend and I can only say thank you and please keep it up folks. God started his miracle with giving us these beautiful babies, and we are just waiting for him to finish it by making them healthy so they can come home to us soon.

Update for CHOC walk:
The 20th annual CHOC walk is next Sunday. So far we have 16 walkers signed up. We haven't quite reached our goal of walkers, so please go to www.CHOCwalk.net/therichards. Select "My Team Page" at the top center and then "Join The Team" at the top. We want to try to pick up the teams wrist bands and t-shirts before the day of the walk, so please register today. Please remember that you must pay or get sponsored at least $50 before you can walk. We can't pick up your wristband or t-shirt if you haven't paid or got sponsored.
Also, thank you to everyone who has made a donation as well. Your support makes our walk that much more motivating and exciting.
The day of the walk, I was going to try to have special t-shirts made for the team, but time has not permitted it, so I don't think it's going to happen. As an alternate, we can all wear white shirts, or if someone else has any suggestions, please email me. remember, we will be taking lots of pictures the day of the event, so slap on your rouge and slick back your hair.
I can't wait to share this with Madaline and Ethan when they get older. Who knows. If we keep this going, they might be walking with us in a couple years.

Pictures:
I know I haven't posted any pics lately. I have been trying to get some of Ethan, but he just too sick right now. I will see if Madaline is up for any within the next day or so as well. She has been showing us her Model Lips lately and its really cute.

We NEED your prayer

Well posting has been a little difficult over the last few days.

Lets start with Madaline... She is continuing to be our little rock star. She is breathing on her own, tolerating her feeds as they increase and doing rather well. She also had her first eye exam that was far from comfortable for her. In the end the doctor said that she is on track for her age and he does not see any significant problems to be concerned about. He will continue to do exams until she leaves to make sure her eyes are developing properly. She is definitely going to be our "Heart Stopper". She is so darn cute, its hard not smile when you look at her.

Onto Ethan... The past few days have been more than a challenge on so many levels to say the least. On Wednesday morning Ethan had what the nurses thought might have been a seizure. They had a Neurologist come in and do an exam. They put him on anti-seizure meds just in case while they planned a couple tests; one being an EEG that will show his brain activity as well as possibly seeing at what stage his brain is developed. They also re-intubated him to help him breathe a little easier. They were concerned that his muscles are so tense. At this point they also felt it necessary to bring on a Genetics specialist to see if he has any abnormalities that could be detected at this stage of the game. The day had ended a little optimistic when one of the doctors that did his evening evaluation said she was not entirely convinced that he had a seizure.
Thursday came and the Genetics specialist came in and did a consult on him. She told us that at this point she did not see anything that would indicate the initial diseases she thought may be causing a lot of the issues he is having. She said that she would do a follow-up exam in due time. She also ordered a chromosomes test to be done that will take about a week to get the results back on. She did notice that his muscles were very tight as well.
Then the Neonatologist came in to see us and said that he was not entirely convince that Ethan had seizure on Wednesday as well. However, he did find out that he has another infection that could be causing the issues he is having. They are going to keep him on the anti-seizure meds just in case as well as putting him on a couple antibiotics. He also moved him from the conventional breathing machine, to the highest machine (called an Oscillator) since he was not responding well to the other. I am thinking at this point that while moving him to the other machine is not good, his infections could be the reason for all of this and at least we have an answer. The problem came when Ethan had to go really high on the settings for the Oscillator and the oxygen level was being increased throughout the night. At this point, he has had his EEG done and we are still waiting on the results. Again, this will tell us if he is having seizure activity in his brain.
Friday, I called in the morning to check on him and they said that his ventilation settings were pretty high (up to 80% oxygen) and he was extremely sensitive to any kind of touch. When I got into the hospital I was greeted by an infection control doctor. He said that Ethan definitely has an infection and they are doing some tests to figure out where it is coming from. He may be Septic, he may have pneumonia, it may be fungal. Also his platelet levels were down. His are at 114,000 and it should be around 150,000 which is an indication of an infection. The are going to keep him on the antibiotics and wait to see what the test results come back and say. Hopefully they can pin point were it is. In the meantime, they will treat it on a general level and try to cover as many basis as possible. After he left, I went to see my little man and the nurse said that the EEG results were back and she paged the Neurologist and the Neonatologist to come and talk to Brady and I. We went in the meeting room where the Neurologist proceeded to tell us that the EEG came back and Ethan is having abnormal brain activity. He is not quite sure if it is seizures or not, but they can't do the other test (MRI) that would help determine that because of the heart surgery he had a few weeks ago. Since the MRI is a magnet and there is a metal clasp around his heart they can't do it for at least another 3 weeks. They also can not do a CT scan on him because the machine is at St. Joseph's hospital and he is to unstable at this point to bring him over there. The Neurologist then tells us that the prognosis is not good. Most babies his size with these type of issues either don't make it, or have severe mental disabilities....


So basically, they are saying that there is a strong possibility that our son may pass away. And if that's not the case, he is going to have a very steep, uphill battle that could very well include sever disabilities. The doctor said that at this stage in the game, he is considered to be in very critical condition.
What do you say to that? Nothing, you just cry, and that's what we did. Brady made a good point to remind me that whatever God has given us is what is planned for us. I want God's plan to keep me with my son.
The rest of the afternoon, we sat with Ethan just touching him so he knew that we were there with him. He seemed to have stabilized (not gone up or down) during this time. My mom, Jeff and Alix came down to the hospital to offer support and love. and for that, we thank them so much. We also called St. John's and asked that they have a pastor come over and have both Ethan and Madaline baptized. Most of the pastors had gone on a weekend retreat. But we had the honor of having Pastor Hayes from St. John's come in and pray with us and Baptize both of the babies. Both Brady and I were able to take part in putting the holy water on our babies head for the process.

I feel like we are in a nightmare and hopefully I will wake up tomorrow and see that my sweet boy is doing better. We've gone home for the night to try and get some rest and will return to the hospital tomorrow.

In the meantime, I ask that you PLEASE pray for our Little Superman and that you ask your friends and family to do the same. He has been so brave and strong so far. We just want to ask God that he continues to give Ethan the courage and strength to keep fighting whatever is trying to bring him down. We know that every prayer counts and gives him that much more strength.

I will try to make another post with updates as soon as I have the strength, or time.

With love and appreciation,
Jamie & Brady

The twins at 4 weeks (And the beeps go on....)

Another few days have passed in the "Small Baby" NICU. With the beeps and buzzing of alarms.

Lately it seems that things are being added faster to Ethan's "To Do' list than they are being taken off. We are a little concerned that about an indent in his mouth that has not resolved yet. It looks like the tubing that has been in his mouth has made its mark (if that's what it is). I just hope it's not here to stay. The doctor, nurse and nurse practitioner came in today to look at it and said that they will keep an eye on it. It is doesn't resolve itself, they will have a Genetics specialist come in to see if it was just the way he was born.
Also, as I have mentioned in previous blogs, Ethan has been working with a development team on his arms and legs. The arms are showing signs of improvement at a "Steady" pace. His legs however have been loosening up a bit. But the progress on his legs is extremely slow. He is not showing any resistance when you push on them and he has minimal reaction when you try to stimulate them. They ordered a spinal ultrasound that was done last night. The results came back as negative today for any abnormality. So they are having a Neurologist come in tomorrow to do a consult to see if there is anything to be concerned with now. Or, if we need to wait a little longer until he develops. While a lot of these issues are not a major immediate concerns, they all affect him long term. So it raises the question. How hard is it going to be for him when he gets older? Will he have any disabilities? I guess we will have to wait at this point to see what happens.
In the mean time, Ethan continues his quest to do better on the CPAP machine. He is about the same as he was a few days ago. The only difference is that they have changed lowered the settings of pressure. The oxygen levels remain the same, so we will watch and wait to see how he responds. He is still retaining fluids, but they re going to hold off on the diarrhetic to see if he can release the fluid himself.
Ethan is also stable with his feeds. They doctors are considering bumping it up a little tomorrow or the next day pending nothing comes up. Again, cross those fingers boys and girls. We want to get some meat on our Little Superman's bones.

Madaline is doing well. She gets TONS of complements from the staff about how darn cute she is (and Ethan too). I asked them if they say that about all the babies. They said no, they just wouldn't say anything at all. Or they would point out how nice their toes are, or something like that.
As of yesterday, Madaline has been taken off the oxygen completely. She is responding very well and we are extremely happy to be able to see more of her face. I'm sure she is a lot more comfortable as well. She had another bath last night. She was a little squirmy at first, but then just gave in and relaxed into it. I'm sure the heat lamps helped a little. The nurse did some suctioning in her nose a pulled out a man-size booger. Who would have though something so gross would come out of something so cute.
Her feeding volume continues to increase and she is responding well to that as well. Yesterday and today were pretty big days for her. Milk was introduced to her mouth yesterday and she enjoyed it very much. The developmental person (Karin), was very impressed at Madaline's ability to suck. Because she is doing so well, we tries a "Non-nutratiive" feeding today. Basically, it means breast feeding without the milk by mouth, but by feeding tube. She did okay, but seemed to want to sleep and snuggle more than anything. The goal is to get the babies to associate a mother's heartbeat, smell, skin-to-skin contact, & breast to a eating and a full belly. We will continue this about 1-2 times a day. And when Ethan is ready, we will do the same with him.

Tomorrow is going to be a big day for the twins. Both have their routine first eye exams. Also, Madaline has a routine ultrasound to make sure that there is not any hemorrhaging in her brain. It's not a concern they have, it's just routine. And Ethan has a consult with the Neurologist. They both also have their daily therapy. Who would have thought that being a mom would mean I have to be their secretary as well. Hopefully, my new bosses will allow me a potty break in between appointments. It's a good thing they pay me well. With good looks and lots of love.

Per the request of some followers, I have been asked to post the weight of Madaline and Ethan.
As of last night Ethan's weight is 1lb, 11oz. Some of the weight may be "Water" weight, but none the less, I think he has gained some weight from his original birth weight of 1lb, 5oz.
Madaline weights 3lbs, 7oz, She is a little rock star.

As a reminder, the CHOC walk is coming up in week from this Sunday. We have have 14 people so far sign up to walk. We would love to have you come out and join us. If you can't walk, you can always help by sponsoring our team. Either way, you can go to www.CHOCwalk.net/therichards to register and/or donate. To those of you that have already signed up and/or donated, I can tell you how grateful and excited we are to have your support. Thank you.

Well lots to do tomorrow, so I should try to get some rest. My next post, I am going to give some pictures that will hopefully put their size into perspective. Stay tuned for the next chapter in our 20 Fingers, 20 Toes.

If Slow & Steadly wins the race...

It has been a few days since the last posting and things have been going at a steady pace. No large leaps, and no large set backs. But they say (whoever "they" are), that "Slow & Steady wins the race". I would like to meet these people "They" call Slow & Steady...

Ethan was started on his feeds again, which is good. They started him on a very small amount (.7 cc) every 3 hours. However, he was having too much residual (which is what is in the stomach before the next feeding that he hasn't digested yet), so they moved it to every 6 hours. They need to jump start his intestines and bowels and the longer they wait, they harder it is to get them to function properly. And his bowels are sounding a little slow right now. Its a very small amount, but very little is better than none at all. When I went in today, they have rearranged his feedings to .5 cc every 3 hours to see how he responds. With fingers crossed, he will be able to move up on the volume of his feedings soon.
He is still showing signs of swelling and they continue to give him a diarrhetic every 12 hours so that he releases the fluid. It's not an ideal situation for them to have to do this. But it's one of those things that we have to watch and wait on. I hate waiting....
So far he has been doing okay on the CPAP machine. His settings of oxygen are averaging in the 28%-50% oxygen levels depending on what is happening around him. Normal air that we all breathe is 21%. He has been going a little higher settings than what I would like to see, but none the less, he is on a less abrasive machine. Slow & Steady strike again.

Unfortunately the person that comes every day to work on Ethan and Madaline and gives them their massages (Karin), went home sick yesterday. Mommy to the rescue! I gave both Madaline and Ethan their daily massages yesterday and they both responded very well by falling asleep and relaxing their muscles. Something I'm sure they have grown very accustom to over the last couple weeks. Next week when Karin comes back, she is going to teach me some more moves that will work on Ethan's range of motion for his legs & feet (that turn out). Ethan at some point will also get a ultrasound of his hips to makes sure there is nothing serious going on. Cross your fingers, eyes and toes. We will also start to work with Madaline to get her prepped for feeds by mouth.

Onto my precious Madaline. She is doing pretty well. Last time I posted they tried to do the PICC line on her so that they would not have to keep poking her to give her some necessary medication and nutrition. Well, they gave her a day off and attempted again and was successful. Thank goodness. One less thing to keep poking her for.
She has now been off her CPAP machine for a few days and seems to be doing pretty well. She continues to just have the Nasal Cannula (like the old people), and her oxygen levels is low. No major set backs to speak of.
Since she had the infection that she had, they had to stop her feeds for the last week. Today, when I went in, they started them up again. She is at 1.2 cc every 3 hours and responding well. Her belly is soft and bowel sounds sound good. Sounds like we may be back on track.

Since both her and Ethan turned 32 weeks (gestational age) yesterday, Madaline is now able to get a bath every 3 days. Unfortunately I missed her 2nd bath yesterday, but boy did she smell good after. I don't think Ethan is at a point of being stable enough to start getting his bath. But he's a boy... Boy's can be a little smelly, right? At least for right now.
Also, the humidity in Madaline's incubator has been turned from 60% down 10% every 12 hours until it stays at 30%. They use humidity in the incubators to help develop the babies skin. Once they turn the humidity off, they can start wearing clothes. Can you imagine how small those clothes are. The nurses actually told me that the best place to shop for the babies is at Build-A-Bear. I might have to go find their halloween costumes there.

A little clarification... In the NICU, babies have 2 different "birthdays". The twins have their actual "birth"-day (September 7th), and then they have their gestational age, which goes by how far along I would be in my pregnancy. (Due date was November 27th). A lot of what happens in the NICU as far as development goes by gestational age. So when you see me write that the twins are having a 32 week birthday, it just means where they are in their development. It doesn't mean when they get older that they will have 2 birthdays and twice the presents.

In the past few days the twins are showing small signs of improvement, slow & steady. We are hopeful, but yet we try not to get so excited, so quickly. As they always say in the NICU, its a roller coaster of highs and lows. 2 steps forward, and 1 step back. I'm getting a little nauseous from this roller coaster though. But, it's like my boss (Dr. Bocchino) said, "Dont' worry, it only lasts for 18 YEARS!" Thanks Dr. Bocchino.

Side note:
Thank you to everyone who has expressed their enjoyment of reading and following our blog. It means a lot to us to know that you are all checking in to see what the latest is on the babies. Your continued love means a whole lot.

Pictures:
The top picture is our Little Superman, Ethan. They took a lot of the stuff off of him to make changes and I had only a spilt second to take a picture so his eyes are half closed.
The next picture is Madaline with her pacifier in her mouth. He passed out sucking on it with it in her mouth.

The twins at 3 weeks

Ethan has been up and down the last couple days. They decided a couple days ago that his infection was better. So, instead of trying to poke him so many times to get IV's in him, they were going to do another PICC (long term IV). They had to poke him a couple times to get it in, but it's in. He has also still retaining a lot of fluid lately, so they have been giving him a diarrhetic to reduce the swelling. So far, he is still swollen, but we are hoping that goes down soon. It's funny, because you look a him and it's hard to tell something that small could look "swollen".
They also decided that he may be ready to go back on the CPAP machine, so they took out the breathing tube and put it on. He wasn't responding very well to it yesterday, but since this morning he has been showing small signs of improvement. They said that if it gets worse, they will have to put the tube back in. The nurse told me last night not to be surprised if it does, but I am really hoping my Little Man it strong enough to do without it.
He is very touchy and dependent on the breathing machine, so we haven't been able to hold him lately. But he does continue to get his daily rehab and massages, and seems to love every minute.

Madaline has been doing a little better after they found her infection and started her on antibiotics. She should be on them for 7-10 days and will not be able to be fed milk while she's on them. Yesterday, they tried to get a PICC line for her. They attempted it a couple times on each arm, and couldn't get it. Her blood is thick right now and the blood vessel just bursts when they try to do it. The nurses are going to think about exploring other options, but for now, they will just have to keep poking her. And when that vein is not longer good, they will poke her again. I swear, by the time my children are out of there, they will not want to see another needle EVER again, and neither will I.
This morning when I talked to the nurse for Madaline, she said that they had decided to put her on just a Nasal Cannula. This is were they take her off the CPAP machine and just put small prongs in her nose for extra oxygen. It looks like what old people have. This is a step forward in her breathing and should be a little more comfortable for her. Plus it's easier to take pictures of her.

Pictures:
The 2 top pictures are Ethan. The first one is a picture with Brady's wedding ring around his wrist. Just a gauge of how small our Little Superman is. The next is a picture taken a couple days ago of him getting his daily therapy and massage.
The last one is just a cute picture I took of Madaline's feet. She is rubbing them together by herself which is a good sign of development.

What a weekend!

So this weekend has been pretty eventful. To the point at which I have been too emotionally spent to sit down and put it into words. This is my attempt to do so, so please hang on for the ride.
Friday during the day was pretty uneventful. Both babies were doing okay for the most part. Ethan had his daily rehab appointment at 2pm and seem to be showing some signs of improvement on his arms and legs. The developmental team and I were both curious to see if the progress that was made over the past week would hold up over the weekend since they don't do rehab on Saturday's and Sunday's.
Brady decided he should try and go to a school event since he has been M.I.A. from school functions since the twins came, (which is all school year for him so far.) He went to a football game and came home around 9:00 pm so we decided to head over to the hospital and hold the babies. We got in and they had decided that Madaline was anemic and that they were going to give her a blood transfusion. Ethan had been started on one as well during the day since he is anemic too.
We went to Ethan's bedside where he was showing signs that he was retaining too much fluid, so they had to give him a diarrhetic which should help resolve the issue. The nurse also told us that he had been having some "spells", and having a hard time coming out of them. This meant was that he was having a lot of BRADY's and needed constant stimulation to keep his heart rate up. Usually when you have a BRADY it is followed up with a DESAT, which means his oxygen levels needed to be brought up. However, this was not the case. It was just strictly his heart rate that was dropping and wouldn't come back up. At first, Brady was going to go ahead and try to hold Ethan, but he started up on another spell just as they were preparing him for some snuggle time. The nurse decided to bring the doctor over and evaluate him. At that point he couldn't figure out why this was happening, but wanted the nurse to keep a close eye on him. If it continued, the doctor said that they would have to re-intubate him and put him on a higher level of oxygen support. This would mean a step backward in his cares and no snuggle time for daddy. We sat there for a while to just watch him and he seemed to have calmed down for a while. Then the spells came back and he would not come out of it himself. The doctor and a large army came to Ethan's bedside and decided that the tube to help him breathe would need to be put back down his throat to his lungs. Brady and I sat and watched them thru the process. (I figured if my son could brave having this done to him, I could brave sitting there and supporting him. What else were we going to do? Sit in the waiting room and freak out as to what was happening). Not fun to watch, but even less fun to have it done I'm sure. They did give him a form of sedation to help relax him, but wow!
By this time it was about 1:00 am and Brady and I were completely and utterly spent on all levels. We peaked in to take a look at Madaline, but we needed to head home and try to get some rest. I called in the middle of the night to check on him and his spells seemed be improving and he was stable. My poor little man has already been through so much.
We woke up Saturday and Ethan was doing better. Brady went down to the hospital to check on the twins and I decided to hang back to try and get a couple things done. I also needed a little breather and spent a couple hours hanging out with the my sister Stephanie, sister-in-law Alix and nieces . I also got to see my best friend Miriam's gorgeous new baby Sofia that was born on Wednesday and may I say she is very cute. (Almost as cute as Madaline & Ethan). While visiting with her I got a phone call from the hospital telling me that they are noticing that there is something going on with Madaline. They noticed that her stool had some blood in it, she seemed more tired and her stomach was showing some discoloration. They started running tests to see what is going on. They were thinking at this point that she may have an infection as well (not the same kind as Ethan though). This type of infection would be in the bowel and if not caught fast enough could be a very bad problem. They stopped her feeds, took out her PICC line, started antibiotics on her and also started taking x-rays on her to make sure that there wasn't a whole present in her bowel. At this point there wasn't, but x-rays would need to be taken every 6 hours since this could be a fast moving infection. When Brady and I got to the hospital that night the doctor on call came to talk with us and told us that he is almost certain that she has a mild case of Necrotizing enterocolitis (NEC). This meant that she has a serious intestinal infection. They stop the feeds since they won't pass through the intestine well. This could mean surgery if it didn't improve. At this point we were going to wait to see if stopping her feeds for at least a week and starting the antibiotics with x-rays to make sure the problem is not getting worse, would be the course of action. And she was doing so well....
We got a call from the nurse this morning. She said the surgical team and the doctor came to have a consults with Madaline and both felt at this time that surgery was not necessary. She is a little more alert today. They have had to put in a new IV which she was not happy about. They tried 2 times and failed because she kept kicking them away. 3rd time was the charm. We will keep an eye on her over the next week and see how she does. Ethan seemed to be doing a little better from earlier in the weekend as well. The doctors will do another x-ray on him tomorrow as well to see how his chest and lungs are doing.
My mom was able to meet the babies for the first time today as well which was nice. And Auntie Stephanie join us as well. At this point we are limiting the visits to immediate family. Next on the list is Uncle Jeff, Aunt Alix, Uncle Kyle, & Aunt Casey.
I still continue to thank God for my babies everyday (more than once). I pray that they continue to have strength and courage to deal with all that they have to date and their future challenges. They have proved to be truly wonderful kids and strong fighters. I couldn't be happier or more proud. I also have not forgot the wonderful support that surrounds us everyday by family, friends and supporters that follow this blog. Thank you to everyone who is curious and concerned to know how our twins are doing. Please continue your prayers as I know they all count.
God Bless You!
Picture:
Top-Madaline & Mommy cuddling. And yes, that is a pacifier in her mouth.
Ethan resting after a longs days work (and believe me, it's a lot of work)