THREE

THREE

Monday, December 27, 2010

Merry 1st Christmas!

We had a Merry 1st Christmas. A very Merry Christmas indeed.

Last weekend was Christmas with my family. That went well. Chaotic, with children now, nonetheless, but it was nice.


Our old Christmas tradition and new one are about the same. Todd's parents come down to spend the night on Christmas Eve. We usually go out to eat, or cook in. They will spend the night, and we open presents that Santa has brought.That is what we did this year as well. Although we usually get ample sleep... however that did not happen this year, and I have a feeling will not for years to come. As you can see, Grey, and Lilly are less than happy here.


But, a few hiccups. Lilly was sick. She didn't have a temp, but you'd never know if she did, because I kept her loaded with tylenol. She had a snotty nose, decided a few feedings not to take her bottle. So, 630pm Christmas eve, I'm making a last minute mad dash to CVS for some Pedialyte in case she decides eating isn't her thing for the next day or so. She had little rosey cheeks, and screamed for the majority of Christmas eve, and day. We made a quarentine play mat for her, so she didn't infect the others.

Owen started to get sick on Christmas night. I loaded him with tylenol, and I don't feel like he got it as bad as Lilly did. Owen continues to have a deep hoarse cough... but no fever. He's grumpy, but he is getting better.

Grey pulled his NG out a few times this weekend. I think he was wishing us a Merry Christmas. It's still a lot for him to be that stimulated with all the lights, extra people, and different things going on. All and all though, I feel like he is doing better and better with that. He still loves the ceiling fan!




Last night we took pics of them in the chair. Lilly and Owen were stacked there waiting for Todd and I to retape Grey's NG tube, and then he got added.



I love this pic. Lilly and Owen with their rosey cheeks from being sick. Grey has decided he is not going to look at Todd taking the picture. He is more interested in the ceiling fan! We tried as best we could to keep him seperate from them so he didn't get their disease!
I think the Christmases (weird seeing Christmas plural in writing.... it looks mispelled!) will get more fun. This year, opening gifts was the last thing they wanted to do. Chewing on the wrapping paper however was very fun. I look forward to all the Christmases yet to come!

Monday, December 20, 2010

Happenings... and pics

Well, my Christmas tree blog will likely not happen!

We had my side of the family Xmas on Sunday. It was very nice. We ordered pizza to keep it easy, and it indeed was much easier. The kids got a lot of toys, and some bath seats that were much needed! They also got a "My baby can read" set... that will be fun to try! Grey got a bit overstimulated, so he and Todd spent a lot of time upstairs chilling in the nursery. He still gets a bit overwhelmed!
We got a few headshots of the kids. Owen is sitting on my lap, and Todd got a pic of him there. He looks like a darn toddler here!




It cracks me up! He is so funny. He now is jabbering, and will be an Indian if you pound on his lips when he is making noise. He gets a kick out of that!





So, we tried the same with Lillian. Lilly is quite the busybody... and this first one, is the funniest picture that she has taken. It was dark in the room, and the Xmas tree was behind her... but she was startled by the flash! I know it may seem a bit mean to post this... lol... But, this picture cracks me up everytime I see it!








Here is the pic of her after she got used to the flash!

I can't say she really likes her bow... but she will wear it anyway!








We weren't that cruel to Grey. We ended up doing an Xmas card through shutterfly, and sent those out as well. Here is Grey's headshot! He is growing so fast!


He loves to look at his fingers, and so, he has his hands up a lot!












Here is a picture that we didn't end up using for the card, but it was cute. Do you know how hard it is to get all 3 to look at you, and smile, or not cry etc.... IMPOSSIBLE! lol. Grey still looks kind of jaundice here... but he is looking better and better each day! We are so happy with his progress!

Monday, December 13, 2010

New Update

It's been a while!
An update on all of us...
Grey is doing very well. We have increased his feedings, and he is tolerating that very well. He is doing well in all of his therapies, and is now starting to raise his feet to touch them. He kicks a lot, and is starting to make different noises when he is cooing. He continues to be a happy boy most of the time. Grey is sleeping very well at night, and if the feeding pump wouldn't wake him up, he'd sleep even better!!:)

Lillian is quite the character! She is starting to squeal, and definitely wants us to know what she wants. She is growing like a weed. Now she is in 6 month clothes and sleepers. Lilly still has the heaviest head she thinks. She will hold her head up, but holds it sideways. We have increased her tummy time because of that!!!

Owen is doing well! He is growing so much. He is in 9 month sleepers, and is about ready to grow out of those! He is so long. He holds his head up very well, and is probably a week or two away from sitting up. If you tap on his mouth, he will make noise, so... he's an indian part-time too!

The dogs... yes, they are great too. They are truly enjoying this snow, and Jasmine thinks that Grey is her baby. Jasmine has always been drawn to sick people etc. For example, when I had my ankle surgery, she guarded me. She knew when I had my surgery on my uterus when I was pregnant with the triplets. She just has that intuitive nature. She thinks Grey is hers. When he cries, she comes to get us. If he is on the playmat, or in the bouncer seat, she will lay by him. She is very interested in him! Hendrix spends a lot of time under the dining room table. He likes his "alone" time!

Todd and I alive! Our Christmas tree is up! We put our old tree up, and we had to move it because of all the baby stuff from where it was the last years. We couldn't get it to stand up, and stay up. So, we bought a new tree. Our new 9 foot tree is now standing in the living room, and looks wonderful. Becca Franklin did a blog on her tree, and the different ornaments that she has on the tree, and I am going to try to do that... I thought that was neat. There are now more ornaments on our tree, with great meaning. Everything means more this year. I have NO... yes... I have NO!!! Xmas shopping done yet. I will be buying everything online this year! sheww!!!

I have some pictures that I want to post, and I will do that when time allows! LOL!!!

Thursday, December 2, 2010

getting along

We are all getting along well. Nights have been a bit different than just with Lilly and Owen. Grey and I have been sleeping downstairs with all the beeping from his feeding pump, and apnea monitor.... we don't want to wake all the troops up.

Grey is adjusting just fine! He has 3 appointments a week with therapies. Speech was today, and he did very well. The plan is for him to take a bottle 3x a day, and then we will do a swallow study on Dec23. This will determine, whether he has another surgery for a G tube, (tube that goes thru the stomach, directly into the stomach for feedings), or if we keep forging ahead with his feedings with the NG tube in. The speech therapist said she thought he would pass the study, and he wouldn't need a G tube. He took 2 bottles today, both with about an ounce each. That is excellent for him. We go next week for a new pediatric doctor at Riley next week, Dr. Brei. He will help with his feedings, and manage his labs etc.

Lilly is doing well. She is eating more and more. I can't wait to see later this month how much she has gained. She still does not like her tummy time, and despite all our efforts, her head control is better, but not super yet. She did roll from back to belly today, but finds it not necessary to be on her belly to roll to her back.

Owen is starting to babble a lot. He has had some rosey cheeks tonight, although his temp is ok, he's been a bit fussy. I am praying he isn't getting teeth yet. I just need another month or so to get things more routine around here.

All things considered, we've done really well managing around here. I am quite pleased that our routine is for the most part in full swing, and doing well.
Grey is settling in here, and considering it's only been 2 weeks that he has been home, and had before that spent his whole life in the NICU, I think he is doing spectacular. He is trying to put toys in his mouth, and touching his feet sometimes. He's gonna be caught up before we know it!

Thursday, November 25, 2010

Thankful

Happy Thanksgiving everyone!

Today, Thanksgiving was at our house. It was a little scaled back today, as we are usually traveling up to Kendallville to see my parents, or we have Thanksgiving at Todd's parents in Muncie. But, since we don't travel light, and Grey requires some equipment for feedings etc, we had it here.

It was a great day, and we have a lot to be thankful for.

All the kids got a bath today, and had their picture taken in the nursery chair with what we named "Todd the turkey".... although I don't think he was amused...


Lilly had the turkey in her lap, as the others do in their pictures, but she was really happy with herself when she knocked it over. She was giggling here. She is the only festively dressed one today. She thought her bow was a bit annoying, but she was a good sport!













Grey liked the turkey, and was a bit tired in this picture. He is holding his head up better though! He is wearing his outfit that Becca, his NICU nurse got him. The brand is Kicky pants, and it is the softest outfit every! It is just darling on him.















Owen liked the turkey. He is a happy little man nowa-days... I'll have to blog about his love for his fuzzy blankets soon. He really takes to them.




















Things have been good around here. Grey had two doctor appointments this week. We have Grey's feedings now going over an hour, and have been for the past day. He has tolerated them well..(knock on wood). He seems to be doing very well at home. It is so nice to see them all interact, and look at each other. The more they are around each other, the more I notice the similarities in their actions, cries etc.


They have gotten so big! Owen is now solidly in 9 month sleepers! Lilly is in 3 month, and can wear 3-6 month, but they are big. Grey is wearing 0-3 or 3 month. He enjoys sitting in his nap nanny, sitting in the mamaroo (that's another device we have here, I will blog about later), loves his bouncy, and likes to sit up on their play mats.

We are so thankful to have our family all together. We are getting used to Grey's feeding pump, and all of his medication schedules... and this year, we are just thankful to have them all, have them all home, and that we are all healthier than ever!

Friday, November 19, 2010

Complete


My family is complete... and so am I.
Grey is home. He is having a good night. He is currently in his pack n play sleeping soundly. He has had a big day. He certainly enjoyed the car ride, and slept the whole time. I cannot be happier right now. Thank you to all of the NICU for all you have done. Couldn't have asked for anything better!



Here are pics!









Owen was sleeping in the swing, so he was not too prepared for the photoshoot!





Grey is just thankful to be out of that NICU crib!

Monday, November 15, 2010

On schedule


Shhhhh.... we're not going to say anything too loud.

We will certainly shout from the rooftops when I load that little man into my SUV on Friday. Grey is on schedule to come home Friday. His bilirubin is down to 9.5. Normal is less than 1... but let's put it into perspective here.... the beginning of November it was 15.2. We have come leaps and bounds!

The feeding pump has been ordered. I will not count my blessings before they come true, but I am really excited!


Tomorrow I took the day off, again, I don't tell Grey these things because when I get my hair done, or schedule it... he acts out! So, the hair gets cut, and color. I have about a thousand errands to run too!


Not going to the NICU is going to definitely be a double edged sword. We have gotten to know the nurses and doctors there better than we ever expected:)!! But, it will be so good to be under one roof for the first time!


Thursday, November 11, 2010

Next Friday

Shhh... Don't tell Grey, and don't jinx us... but next Friday if all the stars and planets align, Grey will be coming home. I say don't tell Grey because, although he knows who I am, and knows who daddy is... he loves his nurse Becca. I don't want him to act up. I have to say in the past week, Erin, and Brooke have also taken care of him, and I think he flirts with them as well! Dr. Bin Saad will be his doctor next week, and he is already giving me a hard time about him not going home! I think Bin Saad will miss me. In fact, I know he will... and I am more than certain that he will miss Todd. Todd has always liked Bin Saad, and he was Grey's initial doctor when he was born.

Adding to my anniversary post, my husband surprised me with my inlaws coming that night so we could go out to dinner, and also sent me roses. Wow, what a guy! We went to Eddie Merlot.... and seriously, that filet was the best! We had a great time. We didn't have to rush home, and I knew the kids were well taken care of. What a treat! Lilly and Owen then decided they would sleep from midnight until 730 in the morning! Thanks kids! The only thing that could have made that day better was if Grey was already home!

Soon enough, my family will be under the same roof. I cannot wait for that day to happen!

Tuesday, November 9, 2010

8 years

8 years today, Todd and I have been married.

So, 8 years…. Many laughs, many tears, many ups and downs. This year I can say that the man I married is the father of my children.

The ups and downs have been extreme at times. Before marriage, he suffered the loss of his beloved brother. A brother that whom when I first met, I knew that Todd shared an affection with him that was unique. Travis and Todd had a relationship that was like no other. I know that he thinks of Travis every day still… it’s one of the reasons I love him.

The wedding…. Oh, the wedding. It was a beautiful wedding, a rather large wedding… and I always said I wouldn’t do it again, but I wouldn’t have changed a thing.

The honeymoon, what a great time. Although, many of you know I am not fond of flying, and I begged him on the flight home from Honolulu to LA to drive from LA. He kindly told me it would be ok, and asked if I wanted my meal…. (cause he was still hungry)… and NO, we would not be driving back from California. That is also another reason I love him. He grounds me. I found that out early in marriage!

We have raised our 2 dogs. I think at one time or another he was ready to get rid of both of them… lol. And, when I was in the hospital before the triplets were born, he told me, he had found a new love for the dogs, they were his friends. They kept him company on his nights without me.

And the triplets. Infertility is not kind to a relationship. It’s was not kind to my self esteem as a woman. It was not kind to me, nor him. After 2 miscarriages that were heart wrenching, Todd always told me “It’s okay to cry, it’s okay to be sad.” And sometimes that is all I needed. The decision to do IVF was different for both of us. I was willing to do what it took to have our biological children. Todd thought that there were plenty of children out there that needed help. He is very humble, and that too is why I love him.

And so 3 IVF cycles later, a correction of my thyroid, and clotting issues. We go for an ultrasound after transferring 3 embryos back…. We see 3 heartbeats. Shock came over me. Joy came over Todd. I remained apprehensive, and scared, he remained happy and so full of joy. It’s why I love him.

And… after the triplets were born. Todd was the professional isolette diaper changer. He loved to touch them. Even at 2 lbs, he wanted to touch them. He allowed me to hold them first, and spend intimate time with them and bond. Todd is the ultimate optimist. I as you may know, I am not! When Grey was sick, I mean really sick… Todd was there, even tempered, even mannered, even emotionally, even after I had fallen apart. I can’t tell you how many times we thought Grey would not pull through. Todd always stood strong, in that he would be fine, and he would end up home with Lilly and Owen. I now know, he is likely right.
I can’t really express my feelings for Todd. Even though we have our differences at times… I think it’s just the way it is. He is my partner. He is my best friend. I cannot express how happy I am to be married to him, to be the mother of his children, and to know we will spend the rest of our lives together.

Sunday, November 7, 2010

Functionality


So, functioning is something that needs to be at it's easiest in the Maurer household now a days. This is a picture of my once uncluttered, once organized, once babyless house. Don't get me wrong. I don't want it to be babyless any longer... I'd like it to be uncluttered... but I'll have to wait for the next 20 years for that!






I rearranged the house furniture to make it more functional. I don't think Todd is fond of it, and I must admit, it has taken some getting used to. 3 swings, 3 bouncers, 2 play-yards, 3 bumbos, 2 toyboxes, 2 pack n plays, one changing table, a rocker... 3 boppies, and the list goes on, and on, and on. That is just the downstairs. I won't even get into the upstairs. So good bye my house that was well put together.. color coordinated etc, hello boppy pillows, pack n plays with blankets placed all over. Good bye leather chair and foot stool... you must now go upstairs. So functioning is what is important now, and it has made things a bit easier!

Day light savings time was a success here at the Maurer house. We did gain an hour... BUT!!!! BUT!!!!! Todd and I fed Lilly and Owen at 1115pm, and swaddled them, turned on their white noise machine, put them in their cribs in their nap nannies.... Good morning! It's 630am. They slept for 7 hours. Not a peep. There was a part of me that was scared to go into their room. But we turned all our clocks back, gained our hour, (530am now), fed them, back to sleep they went and woke up at 1015! It may be a fluke. I'm preparing myself for it being a fluke; but boy it was nice!



I changed Owen from his high calorie Neosure back to Similac Advance. Yes, it's still relatively hard to find Advance, but he has been so fussy at night. After 2 nights of not being on Neosure, he's back to not being fussy. I think it makes him to gassy, or bloated... heck I don't know. If he doesn't get a academic scholarship because I took him off of the DHA/ARA high calorie Neosure for preemies, well then, I guess that is my fault. But, he is much happier! Owen is rolling over all the time from belly to back. It appears he likes to play on his back more, as he doesn't stay on his belly much when placed there!

Lilly has been less fussy in the evenings.. (KNOCK on wood!) I think she is growing out of it a little. We'll see if that continues. She too likes to play on her play mat, although tummy time leaves a lot to be desired for the most part! She does push herself up, and looks at you, but by that time, she is so beside herself that you have made her do it, she's at a loss. They all 3 are babbling and cooing a whole lot. Smiling when they are smiled at, is such a blessing to see!








Grey is doing spectacular! He is off oxygen, and is doing great. His liver numbers went down again on Friday, and we will watch the trend again on Tuesday. He is almost off of methadone (medicine to help him with withdrawl from narcotics from prolonged stay on the ventilator), and so it may not be Friday that he comes home, but I honestly look for it to be early the following week.



Here are the latest pics of Grey, he's a handsome boy!








The dogs got groomed on Friday. I can't say they were happy with me about it, but they look better. They are still sporting their bandanas; that too, they are not happy about.
Have a good week everyone!!! Hopefully this is our last full week without Grey at home!

Wednesday, November 3, 2010

Great news!



Well, I am here to report there has been great news on Grey's behalf! He is off oxygen as of now, and has done very well without it. Yesterday his bilirubin was down, and if this trend continues, and all else is status quo.... I think we may be able to get him home by the end of next week.


I went in to see him today, and his nurse Becca rigged up a "bubble bath". She put oxygen into the water basin in the sink, and he coo'd and giggled when he got it. I washed him all up, and he had no oxygen on, and his feeding tube fell out of his nose, and he was tube free for a while! For the first time, in a long time,.... Grey is a baby. He is a baby that is going to get to come home. A baby that is on target for his age, a baby.... that is ours. He is Lilly and Owen's brother. He is just like Lilly and Owen. For the first time, we will soon have Owen, Lilly, and Grey in our house.... It is just unbelieveable to me! This little guy is a miracle. They are all miracles; but especially Grey. I don't think we are going to need the Omegaven.... his liver is improving without it. They did start some oral fish oil this week, and I am anxious to see the results of that.




I was able to talk to a liver doctor tonight that I am familiar with from the transplant world... and she gave me great peace of mind, that we are doing the right thing, and in just a few months, his liver should be as good as normal. Although she said it will take a few months, she feels that with all of the information that I gave her, and all that he has been through, it is all quite normal. This made me overjoyed.




I cannot count my blessings enough. My family, my friends... Todd's family, Todd's friends.... I cannot say enough about the gratitude that I have for everyone. I have found a new me through all of this. A me that appreciates my mom, and family more that I ever have in my life. A me, that loves my husband... more now, than I ever have. A me that realizes that my dogs, are indeed that... our dogs... but I love them as a part of our family, and they have come to be quite fond of the kids when they aren't screaming! The huskies will add to the joy of watching these babies grow older! I have found a me that knows in adversity, I can reach to the depths of my soul, and being... and make it through with the help of my loved ones. Bringing Grey home will be another challenge. One that we must face, and will overcome just as we did bringing the other 2 home. It is not going to be easy. But someone once told me, I didn't have triplets to make my life easier!


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 ultrasound....um, 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!

Wednesday, September 29, 2010

More Progress

We have so much progress, I feel like beaming ear to ear.
Let's start with the most progress.... GREY!!!
Grey is doing spectacular. He is doing well on his nasal canula. He is getting feedings, and is also stooling. He still has a ways to go with increasing the volume of feedings. Right now he is getting 10 cc every 3 hours (1/3 of an ounce). He needs to be at about 2-3 ounces before we can consider bringing him home. That is, he needs to be stooling, and tolerating the feedings by gaining weight, not vomiting, not heaving... etc. Either way, it's progress. They did an echocardiogram today to see why his heart looked a little big on xray. It was absolutely normal. Again, more great news! Apparently he just has a lot of love! :)

Owen rolled over tonight in his pack n play. I think he got so mad he wasn't getting picked up, he rolled from his tummy to his back. Wow... he gets mad!

Lillian... well, no progress. But not having progress is okay for little Lillian. As "Aunt Brooke" would say, she's perfect anyway!

Nurse Erin is coming over tomorrow to visit and play with Lillian and Owen. It will be nice to have expertise in the house!

I have a goal to get done this week. I need to go through the clothes that we have aquired from both my neighbor(THANK YOU JEN!!!) my inlaws and parents (AGAIN THANK YOU!) and showers and put away the preemie stuff. Lilly is comfortably in newborn stuff, but Owen is in 0-3 month clothes. Grey is still in newborn right now. I need to organize and mark things so we can keep them all straight etc. hmmm... yeah, just thinking about it makes me tired!

Tuesday, September 28, 2010

good feelings

Grey is off the vent. Not really as planned however, it seems it kind of came out early this morning, and he has been doing well since then. I was able to hold him today and spend some precious time with him, and he opened his eyes a bit, and made his little chipmunk noises... which is so good to hear again. I feel pretty good about where he is right now. They started feedings!!! YAY! It seems to be digesting, as it isn't still left in his stomach when they are done. His liver numbers were down a bit, and his kidney numbers and CBC looks great.

Lilly and Owen are going through some colic I think. Seem to be really fussy in the evenings. I think I finally have enough formula until it will be back on the shelf.

We went ahead and hired a night nanny agency. I figured we needed to get it secured for next week.... and go from there. SO, 2 nights of a night nanny, one night my mom is going to do the night shift, and my inlaws will be here the next day to take over until my mom wakes up etc.

Tomorrow Todd works from the NICU, and I think we might be able to have lunch and visit with Grey. Looking forward to that!

Sunday, September 26, 2010

status quo

Everything is status quo with everyone.

Grey- he is doing well. He is still on the ventilator, they are just slowly weaning the pressures. I am hoping that he will be off by the end of the week. I am also hoping that the surgeons start feedings this week as well. The sooner the better.... as long as it isn't too soon.

Lillian, well, she was awake nearly all day today. I don't really know why, but she was a bit cranky. She is now warn out and sleeping.

Owen is just Owen. They are an hour late on their schedule because I foolishly thought that they were going to go 4 hours on a feeding, which they did.... but now they are back on their every 3 hour schedule, just late.

Reinforcements are here tonight, so I am off to bed. I wish my inlaws luck with them, hopefully they aren't as rowdy as they have been all weekend.
Next week it's back to work for me, so this is my last week off. We are still trying to work out the logistics of all of that. Since I work at home, it will be nice. However working at home, still requires sleep... hmmmm...
Anyone know a night nanny that would come for under $25 an hour? That really may be our only option, atleast until we are on 4 hour feedings. Imagine 2 less feedings a day?? Paradise!

Friday, September 24, 2010

Hurdles

Grey continues to improve. He is weaning on the ventilator, his wound looks great, his kidney numbers have normalized. We now wait for him to poop so we can start feedings, and get his liver happier. Hoping he gets off the vent this weekend.

Lilly and Owen are doing well. The formula issue continues to be a hurdle. Everywhere is OUT of formula. Thank goodness for the NICU. Erin H that was taking care of Grey today gave me a days worth. I got 2 days worth at CVS and that was all they had. Heather gave me enough to get me through... maybe another 2 days. CVS said they wouldn't have another shipment in until next Friday. Marsh said the same. Hell will freeze over before I get my formula at Marsh again. I went there today to return what I had bought, and the manager was "on break". I knew complaining to a high schooler would fall on deaf ears, nonetheless someone that didn't give a crap... nor would I have at 18 years old. Interestingly enough, all of their formula was off the shelf with signs all over about the recall. hmmm.. think I'll call them tomorrow on the phone and give them a piece of my mind. But, that might just take more energy than I have. Dr. Simon the neonatologist taking care of Grey is going to give me the Similac rep's cell phone number, in case of issues like this again. That will be helpful. If all else fails, little Owen will go back on Neosure (Lilly's high calorie formula) for a while. I just hate switching him back and forth. Dogs don't even handle that, let alone an infant.
I was up alot last night, for obvious reasons. My mom took over at 9am, and I slept from 10 or so til 2pm. It was quite nice. What was really nice was hearing Erin's voice on the phone cause she was taking care of Grey. It's nice to call in to the NICU, and know for sure that he is well taken care of by someone that cares for him. Again, thank you primary nurses for that piece of mind!

Thursday, September 23, 2010

Self pity....

Allow me to have some self pity for just a second.
First of all the kids are good. They are slowly weaning the vent on Grey. We set a goal to get off the vent by the end of the weekend.
Owen and Lilly are fine, no real issues...

Similac.... I'm not a big fan of Similac right now. I saw on the triplet mom message board at 1045 pm that Owen's formula (some of it) was being recalled. Looked at our supply, after trying for 2 hours to check online because the site was busy, and calling repeatedly to the number... I finally got through. Yep, our whole stock, recalled. So, if I don't want the possiblity of Beetle larvae in the formula, I'd better find him some. Off to CVS (24 hour... cause they are all closed). CVS, wasn't aware there was a recall.... Walgreens, had no formula left... Off to Marsh. I asked when I got in there because they were stocked to the gills... Was this all gone thru to see if any of it was recalled? Manager says "Yep". Super, I think.

Got home, thought, well,... I have some time before they eat, I'll look these cans up. To my dismay, they are ALL FLIPPIN recalled. All $90 of the formula I bought. By this time, it's 2am. I call a friend that I knew would be up to vent, and see if she had any suggestions, and Heather Myers a triplet mom I met in the NICU of course was up, and has some samples. SO, we met at the 96th street McDonalds at 245, and back now just in time, the kids are just now waking up. Heather, if you read this... THANK YOU....
And then I wonder to myself. Why? Seriously.... I want a break. Can't you just give me a break for one week. Please LORD cut us some slack for just a little while. I try not to ask why... I try not to, and I am DONE asking... but there was just a few moments in the car, on the way to get formula for my little Owen that I just asked God, please, please, lower the drama threshold for a few days. Then I laugh at myself, crying in the truck, realizing it can be much worse. And, it can be. So my self pity is over.

Tuesday, September 21, 2010

A good day

Grey had an excellent day today. He successfully got off the jet vent, and is now on a regular ventilator, with moderate support. I walked into his room this morning to him laying there with a sign in his bed that said, "I am going to get off of the jet vent today." Becca, his nurse was practicing positive affirmations with him. Once he was off, she crossed out the GET, and wrote STAY off. There is nothing better than the creativity of a NICU nurse!
He got his wound vac put on. I was telling Todd about it, and he google imaged it before he came to see Grey. Just a word of warning.... don't do it. They are some ugly wounds. Little Grey's wound is clean, not ugly like those. Here is a picture of the machine and the sponge.

Here's the principle of the wound vac. It is a machine, that is connected by suction to a sponge that is cut and molded to the inside of the wound. There is a clear dressing that is placed on top of it, that creates suction when connected to the machine. The suction is there to put negative pressure on the inside of the wound, and it creates new tissue by stimulating more circulation in the wound. It keeps the wound clean, as any secretions of the wound are sucked into a canister, and it keeps it dry. It doesn't hurt him, just likely feels weird once the initial suction is established. It's changed daily by the physical therapy at Peyton Manning Children Hospital. They come over to the NICU and change it. I think this will heal the wound much faster than it would have normally. It is a clean wound, and really has great tissue formation on the inside from what I've seen. (This is when I'm the nurse, and not the mom....)
He's very swollen today, that should improve in the next few days. Becca arranged it so I could hold him today too. I can't describe what it was like to hold him again. He tried to open his eyes, but they were too swollen to open them. Honestly, I really think he is passing gas. Every once in a while you get a wiff of something that smells like stool in his diaper... but it comes and goes. THAT would be excellent if he was passing gas. That means that his bowel connection is good, it's getting good blood flow, and it is trying to get moving again. We should expect a bowel movement in the next week. He needs to have a bowel movement so that they can start feedings again. Once they start feedings they can decrease his IV nutrition, and this will help his liver not be so angry. It's all a chain reaction.
Lillian and Owen are doing well. Owen doesn't even realize that he changed formula. He sucks it down, and doesn't even acknowledge the change. Lillian is eating better, but is a bit constipated this evening. Normally it's not even worth mentioning, but.... it has upset her since about 7pm.... meaning, she has cried since 7pm. The prune juice was given... just waiting on it to work. I never thought my life would revolve around the bowels of my children:)
The changing of the guard is tomorrow. I think my mother in law is going to stay and help my mom out this week, so I can be free to go to the NICU. I still feel like I need to be there a few hours a day to know what is going on, and not feel guilty!
Thanks for all the prayers and thoughts! Keep em coming!

Monday, September 20, 2010

Progress

Progress.... with all 3 of them.
Grey is doing well. They opened up his wound Sunday, and are going to put a wound vac on tomorrow. This is something I am happy about. It will heal much faster, and less chance for further infection with the vac. I have extensive experience with this from transplant, and feel comfortable about that decision. They are also going to try him on a regular vent tomorrow which is huge progress if he does well. Praying he does well, and his bowels start working soon.

Lilly and Owen had a peds md appt. Owen is 10'7 and 22 inches long. Lilly is 7'15 and 20.5 inches long. Owen is being taken off the preemie formula, and Lilly will remain on it. They did get their 2 month shots, and seem to be fine so far.

Looking forward to Grey's progress the most I must say. Should have an update tomorrow on if he did well or not. Let's hope he does!

Sunday, September 19, 2010

another good day

Today was another good day for Grey. There is a little improvement, and his labs look great. They did open up his wound, and are now packing it to make it heal from the in side out. Although it doesn't look great, the wound itself looks much better. He has quite a ways to be weaned from the jet vent, but stable is good.... and we will take it. I just called tonight, and they were able to wean him again. Maybe by the end of the week he will be off the vent, although that may be aggressive.
Lillian and Owen have an MD appt tomorrow. I am looking for them to change Owen off his preemie formula, and to a regular lower calorie formula because he is growing quickly... although I bet he is still in the 20% percentile for wt. Afterall he is 3 months old.
That's all I got!
Big thanks again to my mom, sister, and in-laws for holding down the fort while we were at the hospital!
Have a good week!

Saturday, September 18, 2010

Looking better

Grey is looking better. He is oxygenating much better today, and they were able to wean his oxygen rate a bit. His incision looks GREAT compared to yesterday, and his vitals are still stable. YAY! Since his incision is draining a little bit, they may open it up tomorrow a little bit at the bedside with some local anesthetic and let it heal from the inside out, with some packing.
I am happy with his progress. So thankful for his progress!
Lilly and Owen are truckin along. We have a peds appt on Monday for 2 month shots. Hopefully they won't be fussy that evening.
My cold is going away too, so that makes the world all look much better.

A set back

Well, it's been a long 48 hours. Thursday early morning, I called the NICU, and Grey had been placed on another ventilator and was having low blood pressure problems. I got to the NICU about 4am Thursday morning, and just now getting home from that.Laura was his nurse that night, and I knew he was in good hands. I ended up staying Thursday night there.
After going on a vent called the oscillator, which theoretically should have helped, he had to go to a vent called the jet vent. The jet vent gives him about 300 breaths per minute in order to keep him oxygenated. Thursday during the day he required maximal support with the vent, and multiple medications to keep his blood pressure up. He was basically a patient that needed 2 nurses to take care of him. Thanks Shelly, and everyone that helped!
Thursday night, he seemed to turn a corner, and they were able to wean off the blood pressure meds. Today he was up and down. Although his vitals are mainly stable, his respiratory status is a little less stable. He is still requirying a lot of ventilator support, and not able to wean down the support at all... but maintaining his own on what he is on. His incision from the surgery is red, might have a little infection below the skin, or it just might be inflammation from being pulled so tight from the surgery. Surgery is aware, and increased his antibiotic coverage and doing a few different labs to watch it a bit closer.
I just called, and his blood gases are better and stable still... which is a definite plus. I think looking at Halloween for a discharge date is a little unrealistic right now. His bowel isn't even remotely thinking about working, blood flow to the bowel right now, is our main goal. Going to set a new goal of Thanksgiving. As long as my Grey is healthy and well, he can stay as long as he wants.
I just want to thank Becca, Brooke, Erin, Shelly, and Laura for taking care of my little Grey. Even the nurses that weren't there taking care of him, took time out of their schedules and called in to the nurse taking care of him to see how he was doing.
It is a set back for Grey. In times like these, I find myself being the old ICU nurse. The person that puts up a guard to protect my emotions. I'm having a hard time not doing that, and just being a mommy to him. I think he knows it's me talking to him, as when I did a few times today, his heart rate went up, and he squeezed my fingers. But he needs to heal, and that will come from rest which will help his lungs be more compliant with the ventilator. Gosh I love that little man, but walking into that room is heart breaking at times. I pray that he will be ok, and will come out on the other end of this a healthy, happy little boy. Please join me in that prayer. I'll update as time allows. Please also pray for my mom, sister, and in-laws that have taken on Lilly and Owen duty! They have done a great job so far! Thanks to them as well for helping us out and letting us be where we need to be!
Thanks again everyone!

Thursday, September 16, 2010

post surgery

Not a good night in the NICU for Grey.
His blood pressure dropped, his urine output has dropped. He is now on a ventilator called an oscillator which delivers 700 breaths per minute to keep his oxygenation where it needs to be, and IV medication to keep his vital signs stable.
This can definitely happen after surgery, we knew it could happen.... it doesn't make it any easier to wait it out. Please pray for him, and us. He is a strong little boy, but, Dear God, please help him through this, and quickly!

Wednesday, September 15, 2010

surgery is done!

Surgery is done. Grey did fine. It's nice to see him without a bag on his belly. He is still on the ventilator, which is the plan for a few days to allow pain control medicine to be stronger. The surgeon said it was a fairly difficult surgery, but that it went as good as can be expected. We now wait for him to poop, and slowly wean him off the vent. Then they will slowly start feedings, and go from there. Still in need of thoughts and prayers that he continues on the right path, and that he has no complications!
I think I'm getting a cold.... urgh!
Got the Traverse back.
Very tired....

Tuesday, September 14, 2010

Looking ahead












First of all, Todd brought to my attention today that there wasn't a "solo" picture of Hendrix on the blog. This is a dog we got from Northern Lights Sled Dog Rescue in 2004. http://www.petfinder.com/shelters/northernlights.html So, if you want a good northern breed, and are a good pet owner... or just want to donate... they are a great organization. He is a very good dog. As you see, he doesn't miss a meal but is otherwise very patient. He doesn't have a lick of sense... but gosh, I love that dog!


OH, we get the Traverse back tomorrow. I will appreciate that truck a lot more. I missed my XM, OnStar, Navigation, back up camera and sun roofs.... That little dodge crossover just wasn't cutting it! ;)




Now on to the kids...


We went to see Grey today. He was good. Kind of emotional when we left. I made Owen and Lillian give him a smooch good bye.... well, in preemie standards it was a kiss. Here is their last picture together with Grey when he has a bag. Grey has an IV in his arm, so he can only have one arm in his sleeve. I staged them wittingly I might add, with their NICU orange pacifiers, which Owen really doesn't like, Lilly prefers them, and that's all Grey knows. I thought it was cute.
Wish us luck tomorrow.... his surgery was bumped up to 1pm.... please pray all goes well, he comes off the ventilator quickly, and he has no complications. I'll update when time allows.

Monday, September 13, 2010

Surgery is set!

Grey's surgery is set for Wed at 2pm. I spent the morning with him today, as he was supposed to have a procedure. They were unable to pass a catheter through his stoma.... so they will do it in surgery instead. I read to him, and rubbed his little head. Brooke had him yesterday, so he was still sporting a mohawk!












Lilly and Owen are doing well. Still having reflux, but nothing much new with them. Lilly is feeling much better on her Neosure with cereal. I am going to take them in to see Grey tomorrow so they can all cuddle before he goes to surgery on Wednesday. Here is a pic of Owen with his collar "popped" given ya the PEACE sign!














Lilly is stretching.... getting ready for her Neosure and cereal!

This is Jasmine on the couch.... zonked because she is on benadryl for her allergies.... well, and 2 crying babies!











Saturday, September 11, 2010

Grey and his intestines......

There once was a boy named Grey.... Grey Nolan Maurer to be exact. He was born to give his parents a run for their money from day one!

About 3 days after birth Grey stopped having bowel movements, and had upon looking at the xrays of his belly large intestine that was inflammed and distended. On June 22nd, they did a barium enema, which is a test that looks at the intestine with xray after the contrast barium is injected per his rectum. It showed that something wasn't right in his intestine, and needed to go to surgery. He was, on that day, 1lb 13 oz (he lost wt after birth).

Once in surgery they found that he had a small hole in his mesentary. Mesentary is the tissue that holds the large intestine in place in the abdomen. It was just a freak thing, that many newborns may be born with, however.... his small intestine (jejunum) had gotten looped into it, and had started to cut off the circulation to his small intestine.

There are 3 parts to the small intestine. The duodenum, jejunum, and illeum. After the ileum, there is a valve called the ileocecal valve, and that leads into the large intestine (colon)... which is broken up into the asending, desending and transverse colon.

SO, long story short, they took 1 cm of his jejunum out because it was damaged. That is a short amount that was resected (or taken out). When he was brought back up from this surgery, they said that just proximal (before) to this area, the jejunum looked "ugly". Meaning it didn't have very good blood flow. But, as the surgery went on, it looked ok, and they were going to give it a chance to get better.

On July 23rd, it declared... it wasn't going to get better. It died. Making Grey septic, and near death himself. So 10 more cm of the jejunum was removed. After both surgeries Grey was left with an ostomy.

After parts of the intestine are removed, a lot of times patients are left with stomas and ostomies. This means that if part of the intestine was removed at the jejunum, it is cut there, and the healthy portion is brought to the surface of the skin and a bag is put on it. So food goes from the mouth, then stomach, then duodenum, then the jejunum.... and out into the bag. The reason they do that is usually DISTAL to the injured area (in Grey's case the ileum, and the whole colon) gets inflamed due to restricted blood flow etc. At that time, the part of the intestine that is no longer connected together(remember the bag is now where it would be connected)... that portion is brought up to the skin too. Usually this is to rest the portion of the intestine that was damaged because the intestine proximal, or before it had alot of problems.

SO, after all of this rests, and 6-8 weeks later most of the time it can be re-anastomosed. Meaning he is put back together. The two portions of the intestines that are brought up to the skin, are just now put back together to allow the food to go from the mouth, stomach, duodenum, jejunum, ileum, to the colon... and of course out.
This is a picture of almost what it looks like, but with bags on both of the pieces of intestine that are brought up to the skin.




Some of the issues with this surgery are scar tissue. Scar tissue forms because of the manipulation and previous surgeries. This can cause injury to the bowel, or accidental injury during surgery. Also, since Grey hasn't eaten really.... he has to learn to bottle feed and his intestine that hasn't been used for a long period of time has to get used to be active, and has to move like it's supposed to, to expell feces.

In the meantime, the liver has been injured because of the IV nutrition. It is high in calories and fat. Which doesn't make the liver happy. So, slowly but surely that will recover once Grey gets to take more and more nutrition by mouth, and using his intestine to absorb it, instead of having it thru his IV.
I think I explained this as layman as I can..... email or comment if you have questions. The date is set for WEDNESDAY!!!! I can't wait to hold my little man without his little bags hanging off of him!