Sunday, October 31, 2010

1st Halloween!!

Well it's the first Halloween! We have some pictures from the NICU today. Grey had 2 costumes, he was a bat, and then the Incredible Hulk. Owen was a Tootsie Roll, and Lillian was a Butterfly.

First of all... updates on Lilly and Owen. They are doing great. We are having a little constipation issues, but night feeds have been going really well (knock on wood). Lilly continues to be colicy at night, she can grow out of that ANY minute now! I'm guessing the next time we go back to the doctor, we can start cereal and some food... which I'm hoping that works miracles, .... we shall see!

Grey is doing well too! He is almost off his oxygen, hoping this week or next he will be off of it all together! He is tolerating his feedings, and is at goal feeds for his weight. He occasionally has some loose stools, and isn't gaining weight as rapidly as he was, but all of that is expected. We are not trying to feed him bottles, as his lungs are improving, and we don't want to throw in a monkey wrench into all of that.

Grey's liver numbers are still high. This week I was doing research and remembered from my transplant days a medicine called Omegaven. Omegaven is mostly utilized by Boston Children's Hospital. It's basically IV fish/soybean oil. It is used to protect the liver against IV nutrition damage, but has shown to have some healing properties when it comes to the liver as well when the patient is off of iv nutrition. I called the neonatologist that day, and was hoping that he didn't think I was crazy, and he had already printed off the paper, and had been trying to get it approved by the medical director of the unit. (great minds think alike) So, instead of GOING to Boston, the medical director approved it... now we have to wait for the FDA to decide if because Grey is OFF of iv nutrition, if they will approve it. In the meantime, they are going to start him on some oral fish oil, because St. Judes had some good results with oral fish oil as well. That does not have to be FDA approved. As soon as Grey's liver numbers start to trend down the way we want them too, he can come home. Please pray that the FDA will let this go through, and pray that the liver gets better soon.

The kids really did well today all dressed up in their costumes. I know that they were hot in them. When we walked into Grey's room, he was sitting in his swing, in his bat costume with "sweeties" or the packets oral sugar water they give him to calm him down, and a sign on his swing that said trick or treat! As much as we didn't still want him to be in the NICU for Halloween, Becca and the rest of the NICU staff made it quite enjoyable. We then loaded them up in the stroller (Grey in his carseat for the first time) and they went around to the 2nd and 3rd floor NICU. The kids got sweeties, and ready made Neosure (their formula) for treats. Owen even got a mini snickers bar he liked to hold on to and make crunchy sounds.

Grey REALLY liked to get out of his room, and walk around in the stroller. We are going to purchase a stroller he can have there, so we can do that more often. He was so good, and really seemed to enjoy it.
This week is we are hoping his liver numbers go down, and we will have him off oxygen. Hopefully we will have him home in time for Thanksgiving!!!

Sunday, October 24, 2010

quick update

Nap nannies are the bomb. For 2 nights Lilly and Owen have slept for 5 and 6 hours respectfully! It has been so nice. The good thing also, is that they are back in their cribs! Sleeping in my own bed with the monitor is so much better than either the living room couch, or the leather couch. I can't tell you what a difference that has made for my back and hips! Todd and I were able to organize a little more this weekend, it was nice to be able to work on this together.

Grey is doing well. Lilly and I went yesterday, and Owen and I went to see him today. Today he was wide awake, and not fussy. I laid Owen in the bed with him, and he turned his head to look at him, and coo'd. It's nice to see the recognition. He is up to goal feedings, and is down to minimal oxygen support. I am hoping they will aggressively wean it off, this will allow us to have one less thing on his little face, especially when he gets home.

This week starts a new babysitting schedule. Hopefully the kids adjust, and hopefully they continue to sleep so well at night!!! Let's make this a trend!

Friday, October 22, 2010

So regardless of how the beginning of the week went... the hida scan being abnormal and all... things are starting to improve with little Greybear. His bilirubin is trending down. Here is a recent pic of him. I know it drives Becca nuts when he doesn't have any clothes on, but this particular day... his little face, and jaundice just made me want to eat him! His direct bili is down to 14... and that is super that it is trending down. Now when it gets to less than one where it is supposed to be, I will be jumping for joy. Today they were able to wean his oxygen flow down. This too makes me thrilled to report!

Owen and Lilly are doing well. Owen is back on Neosure formula, and he seems to be a little more fussy at night on it. We'll see how this goes, and if it continues, back to the other formula he goes. Lilly continues her colicy evenings. We purchased a few nap nannies....(pictured to the left) and truly they seem to help with their reflux. We got a pink one, and a green one. Strap them in, and tonight Owen had his legs crossed, and propped up on the side, staring up at the ceiling fan... holding on to a rattle. He thought he was living in luxury. I think it will help with Grey as well. He is used to being on an incline.

This is now how Ms. Lillian sleeps. It has allowed us to get stretches of up to 5 hours of sleep at night. She is a houdini, in that I don't know how, but sometimes her little arm peaks out the top. Interestingly enough, she falls right to sleep when she is swaddled. We purchased some Aden and Anais swaddle blankets. They really have helped. Owen is now to the point that he doesn't even try to get out anymore. He just falls asleep. Coupled with the white noise that is on my iPod, life is usually good. (knock on wood)
Tonight I attended the moms of multiple garage sale for the northside group in Indy. As I was driving there, the leaves are changing, it's windy, getting chilly out... and I thought to myself what we were doing this time last year. We were getting ready to go to Pigeon Forge TN last year at about this time. We celebrated our anniversary there (11/9). We had many discussions on that trip. We really didn't know if we'd have our own biological children this year, or if we'd have adopted. But leaving last year, on the ride home, I said to Todd, "Well, next year, we will have a child.... biological or not; we will have a child." I realized how blessed we have been. We have 3 beautiful children. But at that same time, I think to myself what a road it has been. Not even thinking back to the infertility piece... but the NICU; Grey. I cannot allow myself to go there. I cannot allow myself to think of where we have been, and all the hurdles that we continue to jump. I cannot think of where we are... it is overwhelming. Two kids at home, that require constant attention, and one in the NICU that has my constant thoughts. Wow. But keep forging ahead is all we can do. We couldn't have done it without the help of our friends and family. For reasons listed above, I may not have done enough to show my gratitude.... but know it is sincere, and it is there. Being emotionally bankrupt doesn't really allow one to be themselves. But surely most know that. I can only hope that they know this, as it is sincere.

Wednesday, October 20, 2010

4 months

This is Grey in a frog costume. Becca dressed him up today!

Well, they are now 4 months old.

The doctor appts went well last week. Owen was 12.5lbs, and Lilly was 9.5lbs. They are growing and progressing well.

Grey had his test this week... called a hida scan. It didn't yield the results we wanted. It didn't show any bile being dumped into the intestine. However, I talked to the liver doc today, and she still thinks that it is just TPN (iv nutrition) related injury to the liver. This should heal in time. His bilirubin went down yesterday... and the hope is that tomorrows numbers are also decreasing. The doctor was really upbeat and was pretty sure that all of this would just take time. I did do a "curbside consult" with a transplant surgeon I used to work with. His opinion is the utmost importance to me. He agreed with the plan to wait, and watch his numbers, and not do a biopsy or anything just yet. I am very happy about this, and feel more positive about it all. Grey is now on continuous feedings now, as he was having some significant diarrhea, likely related to the increased volume of feeds that he was on. So now, he just gets them continuous. This has helped a bit.

Today we took Lilly and Owen into the NICU, so that we could all see Grey, and also talk to the liver doctor when she got there. This weekend we also did some pictures for their 4 month "birthday".

Please continue to pray for Grey, his liver, and his intestines to heal and handle the feedings. He is doing well, but we really would like to get him home by Thanksgiving!

Here are some updated pics!

This is Owen in the Nicu today. He is dressed like daddy when he goes to work.

This is little happy Lilly! She was a little grumpy on our trip today... so no good pics from the NICU.

Here are the 4 month pics we took on Saturday.

Brothers. Owen is wearing Grey's party hat from their 1 month bday in the NICU.

Lilly and Grey

Thursday, October 14, 2010

Liver lesson and more!

First of all... update!

The kids had an appointment with Dr. Escobar today. He is a neonatologist that now sees preemies until they are 3. A few things. Owen needs to go back on Neosure (preemie formula). Not for the calories... oh no, not for the calories, but for the DHA that has proven to improve IQ and memory of the preemie population. Owen will be mowing the yard by next week!!! No more hunting for Similac Advance. They are ahead of their adjusted age (6 weeks old.. because they were 10 weeks early), but a little behind of their real age. This was ahead of what he expected for them. They tend to turn their head to the right a lot.... they always have. We are to try to feed them, change them, and play with them on the left side more so they will develop those muscles more. He changed the kids from Zantac to Prilosec. He is going to go over to the NICU to familiarize himself with Grey, and we will see him with Grey, and then again in Feb for Lilly and Owen. Oh, they can also stop their STUPID vitamin that is hellacious to give to them! YAY! They both have umbilical hernias... but this should get better on their own as their muscles grow together more.

On too Grey and the liver lesson.

Grey had a liver ultrasound today. It again was normal. They were able to visualize more of what they wanted to today. All of that was very positive. TPN (iv nutrition) is now OFF!!!! YAY!!!! He is on 100% formula, and 5 cc every 3 hours away from his goal feeds which he will be on tomorrow! He can also start to try bottle feeding if he is rooting, and wanting his pacifier! THANK YOU GOD!!!!!!

The liver is a complex organ, that has over 500 functions! (having to pull out of my brain my transplant education information)

Main functions of the liver

-makes and stores protein

-"cleans" blood

-drains bile to intestine(bile breaks down fats in the small intestine so it can be absorbed there)

-controls a lot of clotting factors

-breaks down fats

-stores cholesterol

So, when the liver fails..... all of that fails as well.

One main function of the liver is draining the bile. Biliary Atresia is usually the lack of common bile duct, or the blunting of the common bile duct which does not allow it to drain the bile from the liver into the small intestine. The bile then backs up into the liver and scars the liver, a lot of times it is an irreversable scarring that causes cirrhosis. Cirrhosis of the liver is end stage fibrosis (scarring at its worse). There are 4 stages of scarring in the liver F1-F4. Fibrosis 1 thru fibrosis 4. Fibrosis 4 is cirrhosis. Anything less than Fibrosis 4 or cirrhosis will heal. The liver is very good at healing itself if given the chance, and if the circumstances that are causing the fibrosis changes. Just a tid bit of information: If you transplant a half liver into someone (which some centers do), it will be the size and functionality of a whole liver in 2 months after transplantation. It's an amazing organ.

Grey's ultrasound today showed that his common bile duct was visualized, and was not dialated... which is super. It looked normal. The hida scan will show more of the bile ducts IN the liver, or intrahepatic duct structure. So again, going through the lack of symptoms of Grey...
Clotting fine, no fluid in his abdomen (ascites) from the lack of production and storage of protein, spleen (usually large in people with liver failure because of the overload of fluid from the liver), platelets good.

I am happy with where we are right now. He still has a ways to go with his liver, it will take a while for his color to return, and the complete function of his liver to return. All of which will just take time and healing. Still praying for normal testing on Monday!

Wednesday, October 13, 2010

5 hours!!!

Lilly and Owen slept like rockstars... or I guess that would be opposite of rockstars last night. They slept from midnight until 5am. It was definitely paradise! It may have been a fluke, but, we'll take it! We have md appointments coming in the next few days.

Grey's hida scan was moved to Monday. I talked with his liver doc today, and she is not thinking that he has biliary atresia, as all the lack of symptoms I noted in yesterdays post... she just wants to do the hida scan for completeness sake. She then went on to tell me that she had a little boy in a similar circumstance, actually had an abnormal scan, but overall it was just the iv nutrition that caused issues with him as well. I felt much better with that. He had a kidney doctor see him today. He has had some high blood pressure, that has been transient. They are going to change his medicine, and we will follow up with them when he is discharged. His renal ultrasound was normal. All and all, I think we are still status quo. Just dotting some i's and crossing some t's.

Here are some pics that I have taken or gotten of Mr. Greybear!
I'll try to post a "liver lesson" tomorrow... explaining what they are looking for in Grey, and an overview of anatomy and physiology.

Tuesday, October 12, 2010

Winston Churchill...

I saw a card today that I picked up for someone close to me.... It was a Winston Churchill quote that said- If you're going through hell, keep going. Hmmm... how fitting for me as well. Don't get me wrong, my children are the apples of my eye, the loves of my life, reasons for being, and they bring me just pure joy. I love them. I love my life. I love my friends and family. Having Grey in the NICU for 4+ months... has been indeed that... hell. I guess the one positive thing is I have made some friends in the NICU nurses that I never went into pregnancy, nor the NICU expecting to come out with. But friends, is sometimes an understatement for these ladies that care for, or have cared for those little joyful fruits of our labor!

On a few other random notes...

Jasmine is quite happy at the moment. She ate 3 snickerdoodle cookies off the counter tonight. Nevermind the fact the container was closed, and pushed to the back of the counter. She will be feeling that tomorrow... or tonight. Seriously, if she pukes in the house, I will be soooo mad at her!

Aunt Sally- I forgot to call you back tonight after talking to mom about scoring us some ready made formula in Kendallville.... I'll email you tomorrow! Lol!

Similac- GET YOUR CRAP TOGETHER! It's so nice that you have discounted the ready made formula, but honestly, searching all over Indianapolis for it is just not in my schedule right now.

Lillian and Owen are doing quite fine. They have 2 md appts this week. One with the genetics guy that sees all the NICU babies. I think they go through their milestones and such... Dr. Escobar. That's thursday 10:00. Then Friday at 2pm, they have an appointment with the peditrician to get their 3 month shots, and a check up. Lilly has been a bit fussy lately, especially in the evening. She has had a runny nose and a cough, although tonight, she seems to be better.

Grey man is doing just fine. They are increasing his feeds, and transitioning him to formula from breastmilk. His IV nutrition is still not off, should come off later this week. His liver numbers did jump up today. The liver doc wants to do a hida scan on him, and with the prep that he needs, the soonest it can be done is Friday. The condition they are checking him for is called biliary atresia. Although in my brain, and heart... I believe his liver issues are just from his IV nutrition. Biliary atresia is something that is helped by surgery some times, but other times a liver transplant is needed. And, sometimes the surgery is just temporary, and down the line a transplant would be needed. I go through his symptoms in my mind.... he has no ascites (fluid in his belly) his clotting numbers (INR, platelets) are super, his spleen isn't enlarged, his gallbladder looked fine on, I really just think that it's damage from the IV nutrition, and not a congenital abnormality.
Please pray that this is the case. Grey needs no more surgeries, no more issues... he's due for a little bit of luck (if you will).

Here are some of the pics that are recent. I have a ton of cute Grey pics... I just need to download them off my phone. They will be coming soon!

Friday, October 8, 2010

Great week for the kids

Just wanted to give everyone a quick update.
First and foremost, Grey is doing spectacular. He is taking his feedings by tube, and is 75% to his goal feeds for his weight. His swelling has seemed to disappear, and he is having bowel movements as we hoped. The doc will be shutting off the iv nutrition tomorrow, and we are still looking at a goal of getting him home by Halloween, or maybe the week following. It is likely that he will come home with a feeding tube that is temporary.... and we'll have to maintain that, but seriously... this is a small task compared to what he has gone through. I held him today for quite some time, and he was less grouchy it seemed. More alert. It was quite nice. I also gave him a bath. Seems the little man needed it. So happy to report that!

Lilly and Owen are doing super. Lilly continues to have her fussy periods at night. She is not taking as much food as she used to...comparing it to a few weeks ago. She isn't vomitting like she used to, and really spits up only once or twice daily. Maybe she is just keeping more calories on board, therefore, does not require the volume... I don't know.
We did have our first experience with a night nanny. She offered some different techniques for caring for the kids. She told us about a book called the "Happiest Baby on the Block". Although some of the techniques may be a little "out there".... they honestly seem to work. Swaddling is actually the staple to the technique. When they first get swaddled, they resist for about a minute or two, and then, they seem to sleep quite well after that. She also introduced us to "white noise". Which is kind of odd. It is supposed to mimic the sounds that the babies hear in the womb. Thinking back... if you hear what it is like to go under water in a lake with a lot of activity going on above, and in the water with the boats, it sounds the same way. Kind of like static. So indeed white noise is like static. The book says to play this loud while they sleep. I found it rather obnoxious, but I did buy some tracks on iTunes, and played it a few feet from their pack n play. Not loud, just enough so they could hear it. They slept for 4 hours. It was a dream. I then decided to see if there was any medical studies on this, and indeed... there is. I guess nobody really knows what an infant thinks, but I can't help to think that since they go to sleep faster, and stay asleep longer... even though it's a little "out there"... it works. Many will say it does, and I wouldn't have continued it if it didn't, but it does. Owen got a little sweaty last night. So, I took off his sleeper, and put on a onesy with socks, and he slept super in his burrito like state. I need to read more about it, but it does oddly enough, work.
We loved the night nanny, and plan to get one from the agency once or twice a week until the feedings are stretched for a little longer than 3 hours consistently. It was nice to have a different perspective on some things that I hadn't thought about, or didn't know about. Talking to some of the NICU nurses they agreed that do what works, and swaddling and noise has been used for years to help babies sleep. I feel like we made a move in the right direction.

It was good to work this week. Nice to get back in the swing of things. It's nice to have my in-laws watching Lilly and Owen just downstairs, so when I come down for lunch, or to get a drink... I can look at their pretty little faces.

We've had some adversity with some other things this week. I pray they go away. I have all I can handle right now.

Sunday, October 3, 2010

Keep moving along

Well, life continues to keep moving. The kids are doing well here at home. Lillian is still having some colic at night. Although we have decided to use this time to give her a bath, and that calms her down for a while. Owen is doing well. He and Todd went to see Grey today in the NICU while Lilly and I put clothes away.... well, I put clothes away and organized, she cried. Owen is sleeping much better. He still enjoys his food, but who can fault him for that. They have had a few nights when they have gone 4 hours between feedings, and then during the day, they have eaten every 3 hours. Either way, I feel we are on the verge in the next few weeks of eating every 4 hours. The full day that they did it was super!

Grey is doing well. He is up to 45ml every 3 hours of breastmilk, however... he isn't eating it by mouth yet, just down his tube. He is pretty testy when he is messed with, just like after the last surgery, but we'll have to work with him again, and get him back to where he was before. His blood pressure was high today. I am guessing that he is going through some narcotic withdrawl. He may have to go on a steady narcotic pill like methadone for a little while, and wean off so the withdrawl doesn't hinder his feedings etc. He did vomit a few times today.... he may be hitting his breaking point that they will slow down on increasing his feedings for a bit. He did have a liver ultrasound and a peds liver md was consulted. It sounds like the liver ultrasound was normal, and the doc was unimpressed with his labs etc. Which.... THAT'S GREAT! Chances are, once he is off his IV feedings, his liver will slowly improve. That's what we want!

I restart work on Monday. I'm looking forward to it actually. My in-laws will be watching the kids most of the week. Night nanny will come Monday and Wednesday nights. Thursday night, my mom will do. Todd will do Friday and Saturday night, I will do Sunday and Tuesday nights. We'll see how it all works out. The tricky thing is getting up to the NICU to see Grey. My anxiety level seems to creep up when I'm not able to go. We're going to have to do something about having time to get there.

Thanks for the continued prayers. Grey is doing great, but still has a journey ahead of him... but all indications is he will be a little fighter that will pull through and strive!