Thursday, December 29, 2011

A growing boy...

Things have been busy, yet uneventful. This week has been one of milestones, though. Monday we lowered his dextrose prescription down to 1.5%, because his blood pressure was too low. Go figure, a child who was once on two separate medicines to control high blood pressure, now has pressure readings that are too low. It's amazing, isn't it? Tuesday we lowered his dialysis therapy time down to 9 hours and 40 minutes instead of 12 hours! It is great that he gets to spend less time locked to that machine and his crib. It allows us all to lead a little bit of a more normal life. Finally, Thursday morning, Parker weighed in at 5.01 kg. Remember, he has to be 10 kg for transplant. Therefore, we are officially half way there! I never in a million years expected us to get here so quickly. It hasn't been easy by any means, either. There have been plenty of days that we've fought for him to eat. Today has to be one of the worst of those. He is officially teething! Yes, you heard that right. My little baby is becoming a big boy and getting his first tooth. He is more interested in chewing his bottle tip than actually eating from it. It is only one more challenge to add to the long list we already have, but we will get through it. Here are a few pictures to catch everyone up.



Yes, those are Christmas presents giving him a boost!



Thursday, December 1, 2011

No news is good news..

I know it has been a while since my last post, but as the old saying goes "No news is good news". Since surgery things have been relatively uneventful, until this week. On Monday night I noticed that Parker's temperature was a little elevated. It was higher than normal, but nothing to be concerned about. Then on Tuesday morning, it spiked to 101 degrees. We spent all of Tuesday afternoon at the pediatrician and most of the evening-until 8 ish- at the hospital getting blood work, specimens, cultures, etc. You name it, the test was done. Things are so much different with him than a normal baby. We had to rule out everything from a viral infection to severe peritonitis. His lab results seemed fine, and his white blood cell count was normal. In fact it was only 7 and we aren't told to report to the ER until it reaches 100.They gave him a strong antibiotic shot just to be cautious and we came home. Well, when we got home, I connected him to his machine immediately, but things weren't as good as we thought they were. His dialysis fluid became cloudy around 10 o'clock that night, which is a sure sign of peritonitis. I was so upset, I cried myself to sleep. As a parent, who administers his dialysis, you almost feel like you are at fault. Like you caused this to happen. Like you weren't careful enough or sterile enough. You feel like you did this to your child. It's pretty much the worst feeling ever. Anyways, the next morning they re-did every test possible. I was a nervous wreck all day because his lab results, which were taken at noon, didn't come back until 10 PM! Low and behold, his white blood cell count came back at 89. We left bright and early this morning to go to Children's and we spent the entire day there. Once again, a full spectrum of testing was done. Parker was diagnosed with a mild case of peritonitis. We caught it early enough that we can give him antibiotics at home in his dialysis for the next 2 weeks. If it had been severe, we would have been admitted to the either the floor or the PICU for IV antibiotics. We are extremely lucky this time. I say that, all the while hoping and praying that there is never a "next time". Parker is already feeling better and is acting like his normal self again.


Monday, November 14, 2011

Surgery day

Well, needless to say last night was a sleepless night. At least for Parker and I it was. He wasn't allowed anything to eat after 12. Now, this is a baby who has to be woken up every three hours like clockwork to eat, and all of a sudden you're telling him he can't have any. You can imagine how this ended. The only way that he would stop crying was if he was laying on my chest. Therefore, that is how we stayed most of the night.

They came in around 7:00 to start getting him ready and get consents signed. By 7:30 I was carrying him down to surgery. He even got his own hospital gown this time.


By 10:30, Dr. Roth came into the waiting room to meet us. The surgery went as expected. They were able to take the vent out immediately, like we hoped. He is back in his room now and is definitely in alot of pain. Go figure they only gave him Tylenol in recovery! We should be home by tomorrow if everything goes as planned. We have been taking turns consoling him. Laying like this is the only way he stays calm.





- Posted using BlogPress from my iPhone


Sunday, November 13, 2011

Surgery #3- Hydrocele

We are officially admitted into the hospital again, and Parker is having surgery tomorrow to fix a hydrocele. A hydrocele is a fluid-filled sac that surrounds his testicle, causing swelling. It's actually very common in baby boys. From what they tell us, the odds are 1/10. The catch is that most times the problem will correct itself. In Parker, however, we are continuously pumping fluid into him-his dialysis-so the area cannot heal on its own. We have left it alone for so long, because it wasn't causing any issues, but lately it's been causing problems with his stomach. We can't have that happening, because we need him to get chunky as quickly as possible for transplant. The procedure is a minor one and typically takes 1-2 hours, but please keep us in your prayers tonight!

Parker has definitely not forgotten this place. He has been mad at every nurse, or doctor, who has walked in the door and he lets them have it! Getting an IV has proved to be a huge challenge, but thanks to one of our favorite NICU nurses- who came up to our floor just to give him his IV- we finally got it done.

Here is a picture of how peaceful he was BEFORE the madness. He had no clue what was about to happen. Sad thing is, we're not done making him mad for the night. It breaks my heart!




 



Sunday, November 6, 2011

Updated pictures

My first walk with Mommy and Aunt Bessie.


First Halloween..


Mommy's little nerd..


Just figured out what the TV is..


Caught him smiling..


Watching LSU beat Bama!



- Posted using BlogPress from my iPhone

Tuesday, October 25, 2011

Dragon Mom...

A few days ago an article from the NY times was posted on a friend's Facebook. I've been thinking about this article for days. It's put me through several different emotions, and has also put some things into perspective for me. I have decided to share it with you, but first I have some things to say about it. Just like any normal person would, I have my days of anger and sadness. The days where I question the lord and why he would give my son a life of pain and complication. Don't get me wrong, I am beyond thankful to him for saving my sons life and I do give him credit where it is due, but lets face it, Parker will be two months old tomorrow, and he spent the first 40 days of his life confined to a hospital, had major organs removed, has labs drawn 1-2 times a week, sees his kidney team every 2 weeks, his pediatrician every month, and will need an organ transplant when he's 20-22 pounds. In the meantime before transplant we live in fear of seizures, strokes, and infection- which could lead to death. After transplant he will be on anti-rejection medicine for the rest of his life, see his kidney team multiple times a month,  have labs drawn, and live in fear that his new kidney will fail. For the rest of his life, he will have to monitor his liver, because guess what, this disease affects his liver, too. Sounds horrible when it's all spelled out in front of you, doesn't it? What's hard to believe, after you read all of that, is that so far, his case is much better than a lot of ARPKD kids. Like I said, I give the Lord all of the credit in the world for saving my sons life, and I thank him daily for that, but the mother in me also has the days where I am mad at him, because ultimately he chose this painful life for Parker instead of a life of normalcy. And if I could, I would take all of it away from Parker and endure it myself, but I can't. So since I can't fix it, I get mad. I've learned from others that this is my healing process and that one day I will look back on it and know that god does everything for a reason. I am working on that as we speak, which brings me to the Dragon Mom. Right before this article was posted on Facebook I was having one of those nights.  I questioned "Why Parker?" once again and thought of all the people that I know who take life for granted. I remember thinking that those people don't know how good they have it and that they roll through life so unappreciative. And then I got a slap in the face...

Notes From a Dragon Mom


Alexandra Huddleston for The New York Times
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state.  He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future.  The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice.  Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now.  No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We've chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn't understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

The End.

....So as of today I have decided that I will no longer be ungrateful or unappreciative of what I have. I will embrace each new challenge that is thrown our way and thank god each time we cross another hurdle. I cannot promise that I will not fall off of the bandwagon, or that I will not have moments of anger. I can, however, promise that I will do my best to remember God's grace and continue to live for today instead of holding on to the past. I will strive for the best for Parker, but if he wants pudding and cheesecake for each meal, then that's what we shall have.   

Friday, October 21, 2011

8 weeks old...

Today, Parker is eight weeks old. It feels weird, though. Although it feels like I just had him yesterday, I also cannot believe it's only been eight weeks. This has been the LONGEST eight weeks of my life.

Parker is doing well and has adjusted to home life. He wakes us up every three hours like clockwork to eat and is now eating 75 cc's every three hours. The dialysis is a breeze. Honestly it's probably the easiest part of our routine. He doesn't mind it one bit, but then again he doesn't know any different. He has been on dialysis since the beginning of his life. He does have a handful of medicines that we have to give. His sodium is low, so we give him 16 cc's of sodium through his diasylate solution. His potassium is high, so we give him Kayexalate. His iron and magnesium are low; therefore, we give him supplements. Then he gets a multivitamin and his epogen shot. He only gets the shot on Monday and Friday, and we are lucky enough that Aunt Crystal has volunteered to be the bad guy who sticks him. This is not a lot of medicine at all given his condition. Many kids with his disease are on 10 or more a day. We are lucky.

There are several things in life that piss him off royally. He hates taking a bath and having his blood pressure taken. He despises the magnesium supplement that he gets twice a day, but if you smelled it, then you'd understand why. He lets you know when it's time to eat and when he's pooped himself just like any other baby. He has a major problem keeping his nuk in his mouth, but is getting better at it. Jason and I have declared that we will become millionaires and develop a mechanism that will keep his nuk in his mouth for him. I will let you know how this goes!




There are several things that I have decided we cannot live without anymore. The fisher price aquarium that entertains him in his crib is a MUST have. I have stated this to several people, but if necessary I would rob someone for another one of these. Yes, you heard me right. That's how good this thing is! Also, we were never people who used a whole lot of batteries. Actually, before Parker, I cannot remember the last time I purchased batteries. Now, we cannot live without them. Especially, "C" batteries. Anything that moves, vibrates, or sings, is AMAZING. He lets you know that it has stopped moving, vibrating, or singing too. He is spoiled to this. Lastly, the new Samsung video monitor is AMAZING. We are still trying to figure out a good setting for the alarms, but I love it. Parker has to stay in his crib, in his room way across the house. So, this monitor has brought peace and comfort to Jason and I while he is sleeping. Did I mention that I LOVE IT?






Our dogs, Phoebe and Bear, are still adjusting to having a baby in the house. Bear is a little more used to this than Phoebe is. He's very calm and isn't phased by the crying. He tends to be more protective when other people are here, but other than that there are no major changes in his behavior. Phoebe, however, seems very confused by Parker. She is no longer the "baby". She isn't the one that is being held all the time. And to top it off, the crying comes from this small human. She tries to get to him no matter where he is. Either it's her trying to comfort him, or her trying to say "Hey you! Shush!", I haven't figured out what she's thinking yet.




Sunday, October 9, 2011

A week of madness..

I know I'm a little late updating this, but I am still going to write it for Parker's book.

Monday started out as a pretty good day. Our dialysis team called us bright and early to tell us that Parker had done so well over the past week, that we would be moving to the floor. We packed all of our stuff up and headed to New Orleans. When we got there I reminded the nurses (just like I did every day) that Parker had to have his "little man" surgery before we left the Nicu. Well, they drug their feet for so many days that surgery wasn't available to come up and do the procedure. Unfortunately, we were sent back home and told to return on Tuesday.

The surgeon was supposed to be doing the procedure first thing in the morning Tuesday, but by mid-afternoon he still hadn't showed. At this point I'm furious. The dialysis team and nephrologists weren't too happy either. The nurse finally called the surgery team back and they said they weren't coming. I'm beyond mad at this point, but the doctors agreed to move us to the floor anyways, so I didn't say too much. So, Tuesday night we spent the night at Children's with Parker and did our "home trial". We had a dinner date with Aunt Namie in our room and attempted to relax. Those of you who have ever been in the hospital, know that this is hard to do.

So Wednesday morning rolls around and still no surgeon. Finally I tell the doctors and nurses to cancel his little man procedure. If this was going to be the one thing holding us at the hospital it wasn't worth it. We could always have it done later as an outpatient procedure. Well apparently this got their attention. No more than an hour later the surgeons were in our room and 30 minutes later he was in surgery.

Later that morning Dr. Aviles- our nephrologist- came in and said, "well guys you are going home!" We knew that it was a possibility to go home that day, but we have learned through this journey that things change every minute; therefore, we did not get our hopes up or make any announcements.

By 3:00 we had escaped the hospital confines and were on the road. We had to stop at the pharmacy in New Orleans and pick up his prescriptions, which by the way took an hour. This is the reason we did not get home until 5:30. Once we got home, let our parents visit for a little while, unpacked, set up the medical equipment, connected him to the dialysis machine, ate, and showered, it was almost midnight.





Thursday morning was spent assembling gifts from the baby shower we had on Sunday. Around lunchtime Jason had to leave to go to work and wouldn't be back for a couple of days. Parkers first pediatrician -appointment was at 3 o'clock. Then we had clothes to wash, had to bring daddy a few things he had forgotten, bathed Parker, connected him to the dialysis machine, ate, and showered. Also, remember that he HAS to be woken up every three hours to eat. He has a very strict diet. So, as you can tell, it's been a little nuts around here.

Friday morning we had to do lab work at the local hospital bright and early. Parker slept most of the afternoon, so I was able to relax a little.

Today we had his bowling benefit. A lot of our friends and family showed up to support us. Everyone had a good time and enjoyed themselves! Thank you to everyone, especially our dear friends who have worked so hard to make it a success. We love you all!








- Posted using BlogPress from my iPhone

Tuesday, October 4, 2011

We've made it to the floor..

Today we got moved from the Nicu to the floor. As I've said before, this is a huge step for little man. We now get to stay here with him, instead of traveling back and forth every day. We even had dinner and visited with Aunt Namie. Parker is loving his new big boy bed, too. It's huge!








Monday, October 3, 2011

Crazy busy..

Have you ever come across that random person who is going in a million different directions at once? You all know who I'm talking about- and at some point we have all been that person. Well I am here to apologize for neglecting the blog. Things have been so crazy busy that I have completely lost sight of keeping track of it. I am actually pretty upset about this, too. Not only because you all have followed our story so intently and deserve better, but also because I wanted it to serve as a way for parker to go back one day and read all the details of his journey.

Since my last post, we have had a few bumps in the road, as well as a few successes.

Now remember that September 29 was our due date. So, technically Parker is just supposed to be getting here, but he was already 1 month and 3 days old on that day.

Let me first say that the team we have is amazing! Each of his dialysis nurses are wrapped around Parkers finger. Sorry guys but it's true! They are pretty much like family. When they come in the room, there is no formal way of speaking. We talk to each other like we have known each other for years! Now, although they are like family, they still have a job to do. Sometimes this job can be dirty. Last week we had to find out what Parkers "dry weight" was. This is his weight with no fluid at all. This information is essential in his treatment so that they can accurately dialysize him, but I can honestly say it hurt their feelings to see the side effects. Think about it like this, what happens to me or you if we have no fluid? We get dehydrated, right? Well along with dehydration comes vomiting. Right after we started bottle feeding Parker is when they dried him out. The vomiting got pretty bad for a few days. It was miserable to watch.

Well, because he was sick and vomiting, he wouldn't eat all of his food. The doctors started talking about a g-tube, but I wasn't hearing anything about it. I knew good and well he could eat without it. I had seen him do it right before they dried him out. I was not giving in to this without a fight. Well, Parker must have heard them, and he didn't like the idea any more than I did. The next day-Friday September 30th- he began eating all of his food and quit vomiting. I was a very proud momma on this day. Since then I am happy to report that he takes the whole bottle in 10 minutes and is still looking for more!

After 2 days of proving his eating capabilities, we were able to take out his feeding tube! On this day he became completely tube free!


Today we were supposed to leave the nicu and be moved to the floor, but we weren't. I have been saying for a week now that he needed his "little boy surgery". You know the one I'm talking about. Well they always told me that they would do it right before we left. Today they called for the surgeon to come do it and he couldn't. So tomorrow morning he will be there and then we can go to the floor. This is a huge step for us. The floor is for children who aren't so sick. Plus our hospital will not discharge our situation from an intensive care unit. We have to be on the floor for a little while doing what is called "home trial". Basically we will not have monitors, machines, and the one on one care we have in the Nicu. Jason and I will be doing it all on our own. We will give all of the medicines, connect and disconnect from the dialysis machine, and take all of his vitals. Basically we get to play house, but at the hospital. I'm not sure how long we will do this for. The only answer we keep getting is "it all depends". I will keep you all updated.

On another note, yesterday was my baby shower. Thank you to everyone who came and for the amazing gifts. We were up pretty late last night washing, organizing, and assembling. We had a blast and it will definitely all get used!







We hope to see everyone at the bowling alley Saturday for the no tap tournament. It should be a fun-filled day!



- Posted using BlogPress from my iPhone

Saturday, September 24, 2011

Lots of firsts..

This week has been filled with many more "firsts" for us.
  1. Tuesday- Sept 20- was our first day of dialysis training. The dialysis team has quickly become part of our family. After all they will be taking care of our son for the next few years, we have to keep them happy! They didn't ease us into the situation at all. There was no feeling out the waters or watching. We were thrown in full throttle. Well, at least I was. Jason got to watch. It's okay, though, because when he gets back from work in a few days, it's his turn. I have been training every day since Tuesday, though, and am happy to report that I've been getting A's everyday! Well, we don't technically get grades, but they've all said it.
  2. Wednesday-Sept 21- was Parker's first bottle ever! Yes, he has graduated from the NG tube to the bottle. He did great for his first time, too! He's still a tad bit confused on how it works, though. He does a lot of "rooting", which just means he shakes his head around looking for the nipple of the bottle and can't figure out how to latch onto it. He eventually figures it out, though. The downfall is that he wears himself out when he starts rooting and gets lazy 3/4 of the way through his bottle. He doesn't always finish, but we are working on this. 
  3. Thursday-Sept 22- I was allowed to start holding him. Daddy is jealous he wasn't here for this, but he will get plenty of time next week. So I have spent tons of time with him this week spoiling him rotten.
  4. Friday-Sept 23- Parker was taken off of the canula for good. He is now breathing all on his own and his SATS have stayed above 95. 
Parker is doing amazing now that he is able to be dialysized properly. His blood pressure is under control without medication. He is no longer "fluid overloaded". He is taking 55 cc's of milk every three hours, which is what the average baby his size would take. The nephrologists are working on getting the number of PD cycles down so that we can get to an overnight schedule instead of the 24 hours a day we are doing now. All of our medical supplies have been ordered and should be here this week. Everything is coming together and preparing for us to come home. We cannot wait!

    Tuesday, September 20, 2011

    Finally caught a break..

    The past week, since surgery, has been yet another rocky roller coaster. During surgery, the doctors had to remove Parker's first peritoneal dialysis catheter. This catheter was put in when we were at Ochsner, only a week after he was born. We had no problems with it before. It never leaked or anything, but it was right in the place that the surgeons would have to make the incision to remove the kidneys. So after the surgeons were done with the nephrectomy, they put another pd catheter in place. The problem was that the new pd cathether and his incision would have to heal; therefore, the pd catheter could not be used for a few days. So the doctors also put in a hemodialysis port during surgery. It felt like the were going to put holes all over my poor baby. :( I knew it was what was best for him, but at the same time, it's hard to accept.

    Many of you may not know the difference between peritoneal dialysis and hemodialysis. I do not claim to be an expert, but I will try to explain it in the simplest of terms. After all, this is how it was explained to me too. Peritoneal dialysis is what is generally done on babies as small as Parker. The doctors pump diasylate into his abdomen, let it sit for a while, the diasylate collects toxins, and then they drain it out. These cycles continue (at this point) all day. When we come home, we will have him on a set schedule. He will be hooked up to the dialysis machine at night while he is sleeping and it generally takes 8-12 hours to complete. Hemodialysis is quite a bit different. Parker's hemodialysis port is in his neck. The port is used for a period of two hours. During this time the dialysis team removes a large volume of blood from Parker. The blood runs through a machine that will filter all of the toxins out of it. Once the blood is clean of toxins, the machine pumps it back into Parker. Parker is so small that they couldn't remove enough blood from him to prime the machine. (This is why we have had to use blood from the blood bank. This, plus the blood transfusions that he required after surgery.) Hemodialysis is typically too stressful for babies Parker's size. Hopefully, now that you know what it is, you can see why.  His dialysis team, however, is amazing! This was only the second baby this small that they have hemodialysized and they were successful with both. I, personally, think they deserve an award just for that and so do others. The team was asked to publish a study based on the first baby that they hemodialysized. They were told it was impossible and that it had not been done. Well our team made it possible, but they refused to publish the study. They said that the patients privacy was more important.

    Friday--Two days after surgery, the surgeons told the dialysis team that they could try to start peritoneal dialysis (PD) again. Well, it was a little too soon. After about 3-4 cycles we noticed that there was a small amount of leakage coming from his incision. They stopped PD and told the nurses that they would continue on hemodialysis the following day. The nurses were given orders to stop Parker's blood pressure medicine, because hemodialysis makes his blood pressure drop. I mean think about it, they're removing a whole lot of blood. Makes sense, right?

    Well, the following day, guess who got his blood pressure medicine? Apparently, there was a lack of communication somewhere. The day nurse gave him his medicine like usual. When the dialysis team began the hemo process his blood pressure started falling and the dialysis team immediately stopped. So now we have gone two days with no dialysis. Parker's kidney levels (BUN and creatinine) are holding just fine. Dialysis is not emergent at this time, but poor thing is so poofy!

    Sunday, the hemodialysis went just as planned. He handled it like a trooper! Monday, however, Parker decided he had other plans. When the dialysis team tried hemo, his line was kinked. Nothing would flow out of it. So, they called us immediately and told us he would have to go back to surgery to replace his hemo port. We, of course, rushed to the hospital. When we got there, they had made a few changes to the plan. They were trying PD again, instead, to see if his incision and PD cath had healed. If we had complications with PD, then we would go to surgery to fix the hemo port. If PD went fine, then we would remove the hemo port. We are now 22 hours into PD and have had no complications. No leakage. The goal was to get 150 cc's of fluid removed by 2:00 p.m. today. When I spoke to his doctors at 8:30 this morning, they had ALREADY gotten 150 cc's removed and still had 6 hours left of treatment. The doctor said she would talk to the rest of the team and see about having his hemo port removed! This will be one less thing that he has holding him back.

    So, Parker is back to himself and proving his point, just like his mommy and daddy! Oh, and by the way he is spoiled rotten already. It's not just us who says this either. The whole team has said it. It is his way or no way! He puts them in their place quick! We will definitely have our hands full, but we can't wait! :)

    Thursday, September 15, 2011

    Children's Hospital

    On Monday September 12, 2011 we were moved from Ochsner Medical Center to Children's Hospital. Of course it seemed like we waited forever that day for the transfer to happen. Well, we really did wait forever. The two hospitals are only 10 minutes apart, so once the transport team from Children's got there, everything happened pretty quick. This was Parker's first experience outside and his first vehicle ride, ever. Two monumental moments in his life. Well, they are in my opinion at least. When we got to Children's we found out that, although he was in the NICU, he would have his own room. This is definitely a plus. He gets more privacy and we can close his doors so that the other babies and machines don't stress him out too badly. We spent the rest of the afternoon Monday meeting with doctors, nurses, the dialysis team, etc. It seemed like the train of people was never ending- and it still is!

    Tuesday morning started bright and early. His nephrology team called us when they were doing rounds, (pretty early) and we headed straight to the hospital. Throughout the day we continued to meet with doctor after doctor. We saw nephrology, urology, cardiology, respiratory, surgery, anesthesia, dialysis and so on and so on. You get the point. It has been a draining couple of days. The final decision was made late in the afternoon that we were going to surgery Wednesday morning and both kidneys were going to be taken out. Once that decision had been made we then had to meet with all of those doctors previously mentioned to sign consents. Personally, I think my signature might be worth something and they aren't telling me.

    Wednesday morning Parker was supposed to be taken back at 7:30 a.m. Well, we all know how that goes. Ten thirty rolled around and he was still in the NICU patiently waiting his turn. By 11:00 he was just getting to the O.R. and we were expecting him to be there about 6 hours. We waited around, signed some more consent forms, got some lunch, paced the floors, and read a few magazines. It felt like time was moving as slow as molasses. Then, around 2:00 the urologist came out and said both of Parker's kidneys were out and that he had done much better than they expected. It only took them 3 hours and he did not require any blood transfusions- yet. We still have our fingers crossed on this one. We will see how he does in the next few days. So, this doctors part was done. At this point, the general surgeons are still working on him and putting in his hemodialysis port. He told us that it should only take another 30 minutes before surgery was completely done. Well, once again we know how this works. Almost two hours later and we still haven't heard anything. I'm getting pretty nervous and I'm being fussed because my leg is shaking so fast I'm apparently "moving the whole chair".  It was true, but I couldn't do anything about it. They finally came and got us so that we could go back and see him. Fortunately, he was still back there for good reasons. He was extubated immediately after surgery, which was amazing! We were told that he would be on the ventilator for 2-3 days, so this is a huge step for him! Before surgery he was on 3 liters of oxygen at 30% and now he is on 1 liter of oxygen and it's room air! He has made huge strides and he's fresh out of surgery! Once we got back to the NICU,  his hemodialysis took about 2 hours, so once again we were in the waiting room pacing the floors. Our dialysis manager did let us go and see him in between. She's amazing! When we left him last tonight, he was breathing so much easier, he still hadn't had to be given morphine, and he was resting peacefully. We know today will be worse, because the anesthesia will wear off, but he's already doing so good!

    Thursday, September 8, 2011

    Roller coaster Ride

    I have decided that the best way to describe our NICU experience, so far, is to compare it to a roller coaster ride. Now, I'm certain that it is not this way for everyone, but for us and our condition, this is the perfect analogy. You see, the climb up the hill is when doctor's prepare you for things. For example, "We have decided to do surgery on Friday to remove one or both of your son's kidneys, but we wanted to prepare you." When you reach the top of the hill, you have accepted things and are ready to face them head on. We realized that even though surgery scared the daylights out of us, it would relieve him of the discomfort, get him stable, and get him home. Then, the descent downhill is when they completely change things up on you and throw a curve ball into the mix. For instance, "We have decided not to do surgery on Friday. Instead we will transport him to Children's Hospital on Monday and his team of nephrologists there will make a decision."

    Ultimately, this is for the best and we completely understand, but it is still so emotionally draining to continuously prepare yourself for things. Children's Hospital is where Parker's long-term team of doctor's will be. Ochsner was just a starting point for us and we knew this all along. Ochsner only has one nephrologist and in his words "That's not fair to Parker." He cannot be there at all times, which is what happened last week and we need continuous care. Now that Parker is stable and off of the vent, we were given the option of several very good doctor's in the area to choose from. Ultimately, we decide to stay with Dr. Aviles. He was the doctor at Children's that I met while I was pregnant and could have kissed for all of his positivity. I have complete faith in him and his team. So, since his team of doctor's will manage Parker's case long-term, it makes complete sense for them to be the one's to decide if and when Parker has surgery and the specifics. So first thing next week Parker will be transported to his new home away from home. The doctor's will let him get settled in and then evaluate his condition before making a definitive decision. I am overall happy with this. Surgery is irreversible after all.

    Wednesday, September 7, 2011

    Long awaited update

    I know that it has been quite a while since my last post and I do apologize. There were a few things that made me wait so long. The main one being that I wasn't feeling so hot. I let stress get the best of me and was extremely nauseated all weekend. No matter how well you think you can handle things, you don't always do that well. So I will pick up where I left off, just to give you an idea of what's been going on.

    Friday, Jason left around mid-morning to go home and take care of a few things. Let's be realistic, it would be nice if every day things could come to a halt when you're in the middle of something so serious, but they don't. Tropical storm Lee was on it's way and we had a few things to pick up. (we knew it wouldn't be anything too serious, but they were expecting a lot of rain and heavy winds) He had business to take care of with work.. Bills and mail to pick up, etc.

    Now, since Parker's delivery, the pediatric nephrologist had been out of town. When do you think he will come back and want to meet with us? Of course, it's the one time when Jason isn't with me. So, I go upstairs and meet with him and we talked for a long time about everything ARPKD means for Parker. Of course, this is the first time I meet this doctor, so he has yet to find out about my semi-OCD tendencies and all the research I've already done. The final conclusion of the meeting was that we would wait through the labor day weekend and see how Parker did. They would decide on Tuesday (yesterday) whether they were doing surgery or not. I am crushed and by myself! Here we are again talking about surgery. I thought we had left this hurdle in the dust last week, since all of his labs were doing so good, but apparently not.

    Saturday, the weather started to deteriorate and we were now going to be stuck in the hotel for a few days waiting it out. Jason says he now knows what it feels like to be put in an old folks home. He said he just hopes those people have a big window to look out of like we did.

    Between Saturday and now many things have changed. Parker had to be put on blood pressure medicine (we knew this was possible), a shot to produce red blood cells, and a stronger diasylate. He was able to be taken off of the vent, and he did very well with that. He was put on a comfort flow canula and he held his own. It made him really mad at first, but he eventually got over it.

    So, Tuesday comes around and the long awaited decision of surgery is made. On Friday September 9, he will have surgery. He will only be two weeks old, and my little man is already facing major surgery! I know it is what's best for him, but it still scares the daylights out of me. We do not know, yet, if they are taking out one or both of the kidneys. We will find out definitely tomorrow. There are several different doctors working as a team to make the decision that is best for Parker.

    After surgery, the main goal is to get Parker back off of the ventilator and onto a dialysis schedule. Yes, you read correctly. I did say "back off of the vent". He has to be reintubated for surgery. They do not expect it to take long for him to be taken off of it this time, since he's already been able to tolerate breathing without it before. Hopefully, 1-2 weeks after surgery we will be moved to Children's hospital, which is only 10 minutes away from ), where we can begin dialysis training. Once we begin dialysis training it should only be 3-4 weeks (fingers crossed) until we can bring the little man home.

    So at least now we have a plan of action and a long term goal. Please keep him in your prayers. The next week will be so tough for him.



    - Posted using BlogPress from my iPhone

    Friday, September 2, 2011

    In true "Kristen" fashion..

    So, in true "Kristen fashion", there is a storm in the gulf for labor day. You didn't think mother nature was going to let me get off easy this year, did you? Of course not. There are very few birthday's that she has let me enjoy without the threat of one, so by now I am used to it. At least this year it is a minor storm, but could it be going any slower? I mean 10-20 inches of rain is a tad bit ridiculous. I know that quite a few of you talked about coming visit us this weekend, but we ask that you please stay put and stay safe. We will see y'all again soon, don't worry. No need to put yourself in harms way.

    I know that I didn't update yesterday about Parker, but if you notice I did change the blog a little. I was starting to feel like it was a little drab, so I did some updating.

    Parker is doing great! Today is his one week birthday! His kidney labs are still coming back low. His BUN came down from 24 to 21. His creatinine went up from 1.2 to 1.3. His sodium is staying up and his potassium is staying low, which is important. His platelets are finally holding steady (they have been dropping a little each day). They had discussed another platelet transfusion for tomorrow, but the doctor said he is happy that they have been holding in the same range for a few days so he will hold off. He is tolerating dialysis well. They are doing 40 cc's and letting it dwell in his belly for 30 minutes. They are upping his diasylate from 2.5% to 4.25% in an attempt to drain more fluid from around his lungs. His ventilator settings are lower than they were pre-surgery and doctor Vic plans to ween them down at 12 again. He is now on continuous feeds of 5 cc's of milk every hour, which is more than the 3 cc's they began yesterday.  Dr. Vic is in the process of weening him off of the fluids that he was getting and using strictly milk. Like the doctor said, there is more substance and vitamins in the milk than there are in the fluid. So far they have removed well over 300 cc's of extra fluid from him and his dialysis port is holding up well. No leakage and no complications. His first surgery was a success! Parker's pediatric nephrologist should be back from vacation any day now, so we are anxiously awaiting our meeting with him. We believe that we will get much more info once he is here. Parker seems so much more comfortable overall. He is awake and looking around much more now. He has the funniest facial expressions and is even trying to smile every now and then. The vent makes it a little difficult, though. He already hates the camera. Every time you take one out he closes his eyes and the smiles come to a stop. Wonder who he takes after? lol



    Oh and we had more pee pee today! The doc always tells the nurse to save it and show us. He laughs because I always say if I could frame it that I would. (I truly mean that, too) My poor son would have a room full of framed diapers if it were up to me. Yes, I know that sounds a little creepy, but I get quite excited about this subject.



    Wednesday, August 31, 2011

    Day 5- Removing fluid

    We talked to the doctor this morning and all of Parker's labs look great. His creatinine went up to 1.2, but that is still an amazingly good number. His kidneys are still maintaining on their own! How awesome is that? We will, however, run the dialysis port this afternoon. They will only be running fluid through it, though. They are not running actual "dialysis", because his kidneys are doing just fine.  They are using the port because there is a little fluid around his lungs and the doctors believe that if we could drain that fluid, the lungs will respond better. By relieving some of this pressure that he has, we are hoping that he can begin initiating breaths on his own again. This morning his settings were higher up with his vent than usual, so we are trying to get him back to where he was. Being that his port is new, they are not running a lot of fluid through it. The doctor said he would only use about 30 cc's. I asked about the site of the port leaking, being it is so soon after having it placed. Dr. Lunyong said that they tested 30 cc's through it yesterday after surgery and it held up just fine. He also mentioned that they upped Parker's feedings to 5 cc's of milk every 6 hours and he is doing well with that. Also, his nurse was so excited to see us this morning. She had been saving a diaper to show us that they had a small amount of urine in it. Yay for Parker and his pee pee diaper! She was just as excited as us. 

    Since this morning they have run the fluid through his port continuously. It takes about 10 minutes to pump the fluid into his belly, they let it sit in there for 30 minutes, and then they drain the fluid out. The hope is that when they drain the fluid that they will pull out more than they put in. So far, since they started running the fluid at around lunch, they have removed 33 extra cc's of fluid. So this is 33cc's of fluid that was causing Parker discomfort! Poor baby! Parker has been tolerating the fluid really well. His nurse has been keeping a close eye on his blood pressure and his oxygen levels. While we were up there visiting earlier, Parker decided to show off and have a oxygen saturation of 100. He's already a big ham! They have been able to lower his settings on the vent slightly, but we are happy with this. So far everything is going well. Please continue the prayers. They are working!

    Oh, I forgot to mention that he had his open for a very long time this morning, and this time Jason was there to see it! It was so nice being able to see this. He has been sedated and sleeping for so long now, poor thing! 

    Tuesday, August 30, 2011

    Day 4- surgery

    I know that many of you have been on pins and needles waiting to hear how Parker is doing and what decision was made. I will be bluntly honest with you, I would have posted hours ago, but this morning was probably one of the worst experiences we have had since we've been here and it took it's toll on me. I worked myself into exhaustion and I just woke up.

    The morning started off great. We went up to see him and Dr. Lunyong was already at his bedside ready to tell us all of the good news. His sodium had gone up from 126-133, which they were very pleased with. His liver enzymes, which have been elevated, finally came down to normal. His creatinine had come down again, instead of going up. His BUN only went up by a point. He had a tad bit more urine in his tube. Everything was so good! According to all of this information, Parker actually seems to be maintaining his kidney function on his own, even though his poor kidneys are so big.

    At this point they told us that they would be preparing to bring him downstairs for his two tests. Because he would be being transported, had tests in two different locations, and would be moved around and upset so much they gave him two medicines to keep him calm. The problem with this is that both of these medicines have a side affect of lowering his oxygen. Some people apparently tolerate them together very well. My son, however, does not. While we were at his bedside we witnessed one of the worst things a parent can ever imagine. His oxygen levels began dropping quickly. This has happened before, but usually if they change the settings for his vent, the levels will come right back up. This time was different. His oxygen levels were dropping fast and they weren't coming back up. His oxygen levels started in the eighties and by the time they started to stabilize him they were in the thirties. The doctor ended up having to use the bag to manually get him oxygen and stabilize him fast enough.  Just imagine standing next to your child, watching them struggle to breath, and being helpless. You are not able to do anything about it. It was absolutely horrible!

    They finally had him stabilized long enough for him to go downstairs and have his tests. About two hours later they called us and let us know he was back upstairs in the NICU and tolerated the tests very well. We immediately went upstairs to meet with the doctors to hear the results. It seems as though the doctors are convinced there is some function to both kidneys. We don't have the official report back to know exactly what that function is, but they have decided to leave both kidneys in at this point. They did see the bladder and there was a small amount of urine in it, so that is a very good sign.

    So today around 4:00 they did surgery. They left both kidneys in him and placed a peritoneal dialysis catheter in his belly. Parker will eventually need dialysis.  It is inevitable, but it is not something that he needs to be started right now. The reason they decided to put the catheter in today, though, is because it takes time to heal. The longer it is in before they have to use it, the less likely it is to leak or cause infection.

    The surgeon called at 5:30 to let us know that he was out of surgery and that he tolerated everything very well. Maybe even better than they expected. The surgery was done at his bedside in the NICU so they did not have to transport him or move him around, which was very nice. He also said that once all of the medicine and anesthesia wore off, they expected his oxygen to return to higher levels. At this point, we are waiting for the nurses to call and let us know that we can go up and see him. He will be resting and recovering for the remainder of the night, so we will not be staying too long. He needs to gain some of his strength back and so do we.

    Please say extra prayers for him tonight when you can. He needs each and every one of them. Thanks!

    Monday, August 29, 2011

    Day 3- Baptism

    Today was an eventful day for Parker. As usual, this morning when Jason and I woke up we went straight to the NICU to see him. When we got there the doctors were right in the middle of report so we got to sit there while they went over all of his labs and electrolytes as a team and then they addressed us personally about what their plan was for the day.

    Parker has been extra agitated the last few days. He has been throwing big temper tantrums, which in turn makes his oxygen levels on the vent go up and his blood pressure readings go up. These temper tantrums are basically a result of him being so uncomfortable due to his large kidneys. Each of Parker's kidneys are measuring about 11 cm. To give everyone something to compare that to, the average adult female's kidney is 13 cm. So his little bitty belly is supporting something that an adult usually does. So they've upped his medicine to control the temper tantrums and now he is being alternated between verced and morphine on a regular schedule instead of as needed.

    In Parker's labs and electrolytes the doctor's main concern was getting his sodium levels up. They have changed a few things, but the one major one is that his fluid is no longer 1/2 saline, it is now full saline. They ran his labs again tonight around 8 and said they should have his results back sometime tonight. So we should know by morning if this is helping his sodium go up. So far his potassium is staying low, which is good and unexpected. They thought it would have gone up by now, so you can imagine our excitement.

    We also had the Catholic priest here at the hospital come in and do a baptismal for him this morning. It was very important to us that he have this done as soon as possible. He also did the anointing of the sick prayer and left the nurses extra holy water for us to use.

    They did the ultrasound of his belly today around lunch. What we found out from this was that there wasn't much fluid around his kidneys and bladder. His belly is basically all kidney. So we were initially under the impression that he was having surgery to do removal tomorrow one way or the other. The pediatric surgeon and pediatric nephrologist conferenced this afternoon, though, to discuss the situation and decided differently. Now, what we are going to do is run some tests in the morning. The pediatric nephrologist ordered two different tests to determine exactly what Parker's kidney function is. The reason he decided this is because of his labs. All of his BUN and creatinine levels are coming back pretty decent. When he was born, his creatinine levels were good, at 0.7, because I was doing all of the work for him while he was in my belly. In the last few days, though, they have slowly gone up to 0.9, then 1.2, but today it went down to 1.0. The doctors seemed baffled by this. These numbers are slightly elevated, but not of extreme concern. His BUN this morning was slightly high, but once again nothing to be concerned about. This plus the very small amount of urine in his catheter makes the nephrologist believe that there is some kidney function somewhere. So the tests tomorrow will determine which kidney is functioning (one or both) and what the exact function of the kidney is. They did say that dialysis is not eminent in the next few days. It seems as though his levels are being controlled very well on their own for now. Like the surgeon said when he called me, "We do not want to do anything that is unnecessary and irreversible, because babies with their native born kidneys make it to transplant faster. Therefore, if one is functioning and we can keep it then he will do better." So these test results will be back tomorrow sometime after lunch and we will know then exactly what we are doing. We may just be inserting a dialysis port, or we may be removing one or both of his kidneys. No matter what, if he does need surgery it will be late tomorrow afternoon, so please say extra prayers then.

    We also met with the social worker here at the hospital. She is my new best friend! I love her! She has helped us and informed us with so much today that I can't even explain it.

    Also, some of our best friends have organized a no tap bowling tournament benefit for us. They are amazing and are going above and beyond for us right now. Thank y'all so much! They will have more information and details available soon, but as of now they have the date set for October the 8, so save the date! We hope to see you there.

    These are just a few pictures from today. If he has surgery tomorrow it will be a while before more are posted.



    Day 2-Discharged from the hospital

    Well today was an eventful day for us. Essentially we could have stayed in the hospital until Tuesday, but our situation is different. If I had to go home, which is an hour away, I would have definitely stayed admitted until Tuesday. We, however, have decided to stay in the city to be close to Parker. Ochsner's hospital actually has a hotel connected to it so it is extremely convenient. Although it will get expensive, we have decided this is the best option for us. No matter what the cost you could not pry us away from our son at this time. There is no way I could be an hour away from him! So when we told them that we would be staying here at the hotel, they told us we had the option to be discharged today so we could come here, get settled in, and get a little more rest. Let's be honest, the nurses coming in and out at all hours of the night, the hard sofa Jason was sleeping on, and the tiny room to move around in was not "comfortable". Plus, it's probably cheaper for us in the long run to be admitted for 2 days instead of 4. So around lunch time we packed up the tons of stuff we somehow accumulated and moved into our temporary home.


    Parker's update for today:


    Around 3:30 a.m. I couldn't take it any longer. I really wanted to go up and see Parker, but Jason was sound asleep and I'm still limited on mobility; therefore, I decided to call Parker's nurse instead. It is the next best thing after all. She told me that his blood pressure average has been staying in the mid 50's (88/40 overnight), which is a really good improvement for him. Also, they have started doing his blood gases (that determine lung function) every 12 hours instead of 6 since they have been so good. From now on they would be running all of his labs at 5 a.m. every morning unless something changes. This is a good thing for Parker. The less they have to use his blood line, the less chance for infection. Since I had heard good news I was able to finally get some rest. Actually we slept in until almost 10, so that was the most rest I have gotten in a few days. 


    When I woke up and realized how late it was, I immediately called up and talked to his nurse again. I knew that his labs had been run and I am too nosy not to know what is going on. His day nurse is amazing! On Parker's first day she signed up to be his primary nurse. This means that any time she is here, she is assigned to him and he is her only patient. He is being spoiled already. He is a nurse hog! :) But we like it that way. This is what she told me:
    1. The platelet transfusion from yesterday was a success. This was my main concern all night. Yesterday, before transfusion, his platelets were 36,000 and this morning they were 104,000. They have over doubled! I could have jumped up and down on the bed, but lets be honest, at this point I have trouble sitting up in the bed. So I definitely can't manage anything more, but you get the gist of how excited I was. 
    2. His sodium and potassium were relatively the same. His sodium still only went up 1 or 2 points, but Dr. Lunyong was happy with these results.
    3. He was taken off of the bili light because his bilirubin went down to 10. So no more beach time for Parker and we hope it stays this way. 
    4. His BUN and creatinine were slightly increased, but this is something we expected to happen. His BUN is still within range and creatinine is a little elevated but Dr. Lunyong is happy with where they are. Like he said, we expect a small gradual increase. We just do not want a rapid jump. 
    5. Some of his liver enzymes have come down. YAY! 
    6. The amount of pressure the vent is giving him with each breath has decreased. He is initiating each breath on his own. The vent is just giving him a little extra support. 


     I love waking up in the morning to such good news. All of this was enough to make me a happy woman, but the good news just kept on coming. 


    Dr. Lunyong had today off. He was not supposed to be here at all, but being the great doctor that he is, he came in today just to see Parker. How lucky are we? So, before I hung up with Parker's nurse she suggested that we go up there as soon as we could. Dr. Lunyong told us that he is happy with Parker’s progress. Oh, and they saved the best news for us until we were up in the NICU. He had a very small amount of urine in his catheter line this morning. It wasn't enough to be measurable, but it was a happy surprise for everyone. It is a small glimmer of hope. They didn't expect anything to come out. I've never been so happy to see pee! :) Also, his lungs are stable enough right now for him to start making a plan of action. Dr. Lunyong has consulted with both nephrologists (Dr. Aviles at Children's and Dr. Cunningham- who is on vacation and still monitoring Parker’s progress via computer). He also consulted with the Pediatric surgeon. We now have a couple of options BEFORE we would face kidney removal. At this point I felt like the news was so good I needed to knock on wood or pinch myself. On Monday they are going to do an ultrasound of his belly. They are looking to see if there is any fluid around the kidneys and bladder that could be causing added pressure and essentially making it harder for these organs to work. If there is they will put in a catheter in his belly to drain this fluid and see how he progresses from there. If there is no fluid, then we can start very small amounts of dialysis when the time comes that he needs it. This was not an option before because of his unstable lungs. So all very good news at this point. Dr. Lunyong said,  "As of now we are in the "holding stage". There are many different scenarios that could happen, but we have to wait and see and we will know much more tomorrow".  


    Later on, when I went up there to drop off milk, he was fussing over his vent again so I was able to hold his hands and calm him down. This is not something we get to do often so I was elated. Then, out of no where, he opened both eyes for me for the first time! My heart melted when I saw this. Jason was not with me and did not get to see it, but he will soon. :(


    I have had a smile across my face almost all day long!


    I was also able to leave the hospital this afternoon. I told Jason I felt like I was breaking out of jail. I haven't seen the sunlight in a few days. We picked up my prescriptions at Walgreens and went to dinner to celebrate all of today's good news.


    All of our prayers are working so please, please continue them. Sorry I do not have any new pictures tonight, but hopefully tomorrow.  Thanks to everyone for everything. Your continued support is amazing and is helping us through this. We love you all! 

    Sunday, August 28, 2011

    Day 1



    I know that technically, since it is 3:46 a.m., that it is day 2, but I did not have time to update yesterday. Now, some may ask, "What are you doing up at 3:46 a.m., updating a blog"? Well I'm pumping and updating at the same time. Good multitasking skills, right?

    When we went to visit Parker first thing in the morning we were happily surprised that his vent had been lowered quite a good bit. When Parker first made his debut his ventilator rate was set at 40. From what I remember of my hazy tutorial, this means that Parker's lungs needed 40 breaths per minute. Now it has been lowered to a rate of 20. That is a huge step in the right direction. Also, at first his vent was set at 60% and we were told that they would ween him down very slowly. This morning when we arrived it had been lowered all the way to 34%! We were amazed! Now, it has had to go back up a little bit since then, but he's also had a lot going on.

    All of his kidney levels early this morning came back well within normal range and they are still monitoring his sodium levels to make sure they are increasing. Still no pee diaper. :(  He has had plenty of poop diapers, though, because today they started feeding him 2 cc's of breast milk every 6 hours! How awesome is that? As you can see, I was excited!

    His blood platelets came back a little low. The lowest they would allow his platelets to get is 30,000 and his were at 36,000. His neonatologist decided that since it had been slowly getting lower all morning that they would do a transfusion before he got to 30,000. Parker did very well with it and didn't even get too fussy. We will find out how much this helped and how his platelets are doing at 5 a.m. when they run the rest of his labs.

    His bilirubin levels were not too bad, but just to be safe the doctor gave him some time under the lamp. Parker loved it! He was so calm and relaxed the entire time, that we joked with the nurses that he thought he was laying out on a beach.

    Jason says he is relaxing with his shades!



    Overall today was good day. Although it does sound like he had a few set backs, he also had a ton of improvements as well. His doctor is very aggressive when it comes to his treatment. We actually appreciate that and prefer it that way. He takes care of things before they get to a point that is bad for Parker.

    Once again thanks to everyone for the outpouring of support, prayers, and all of the Congratulations messages! We have an amazing set of friends and family! Please continue to pray for Parker as much as possible. Although he is showing his strength, he still has a long way to go before we are out of the woods.






       

    Friday, August 26, 2011

    Parker is here!


    Well, Parker decided that he was ready to meet everyone and was tired of waiting. Either that or he was not happy that daddy left him to go to work. When I woke up yesterday, the contractions were definitely stronger. By last night I was timing them every 20 minutes apart. A few hours later they were coming every 10 minutes. So my awesome friends Naomi and Rusty packed me up and brought me to Ochsner. They gave me fluids and continued monitoring me. I called Jason about 230 am and told him he needed to get in from work as soon as possible (per the on-call doctor) This is about a 3 hour trip for him. Around 5:30 Dr. Robichaux came in for his rounds and said that since the contractions were getting stronger and longer that we were going back to the O.R. at 6am. Oh and did I mention that Jason got here two minutes after Dr. Robichaux came in? Talk about cutting it close! I was pretty nervous.

    At 6:28 am Parker made his entrance into the world, weighing 6 pounds 13.7 ounces and 18 inches long. The c-section went well. I literally felt nothing. Dr. Robichaux told me Parker was out and in the next room with the nicu team and I still had no clue that he had even cut me. At this point I was in and out of consciousness, but I heard someone say "Did you hear that? That was him!", and my eyes shot open.

    They were able to keep him on a CPAP machine for the first hour, but poor thing was struggling too hard. The doctors have since intubated him and he is holding is own and fighting. The last few blood gases that they have drawn have been REALLY good, but the vent is pumping 40 breaths per minute to him. The problem with hid lungs is that his kidneys are so big that his lungs have been too cramped and are too small. As far as maturity and development they are normal (not thin or transparent), just too small. So for now the plan is to stabilize his lungs a little better and consult with a nephrologist. Of course my luck was that the pediatric nephrologist here at Oschner is on vacation when I deliver. So they are calling Dr. Aviles at Children's (who we have already met with and who already knows our story. This is the doctor I wanted to kiss for his positivity!). If his lungs can be stabilized enough they are looking into surgery to remove one or both of his kidneys to make room for his lungs.

    So far things are looking okay. Not good or great, but definitely not bad either. I will keep y'all posted as much as possible, buy for now my eyes are getting really heavy.







    T
    - Posted using BlogPress from my iPhone

    Tuesday, August 23, 2011

    Unexpected day..

    We started off our day at Dr. Sanders' (OBGYN) office at 9:30 this morning. The NST test was up first, but after about 30-45 minutes Parker still wasn't as reactive as we would have liked. I think he was taking a nap! It was then explained to us what was needed for Parker to pass his biophysical. During a biophysical there is a total of 10 points you can get; therefore a 10/10 is the best. There are two points given for adequate amniotic fluid, which are points Parker will never get, because he has no fluid. There are two points for the NST, two points for practice breathing, and four points for movement (there are 2 types of movement). Parker hadn't exactly failed his NST, but it wasn't the best, so he didn't get those points either. Now we are down four points, which is where doctors start to get concerned. Now, he has to prove he is moving and breathing. We did an ultrasound and immediately saw his little chest moving and practicing his breathing skills. Yay! Two points for Parker! He did need some coercing to move around, and the ultrasound tech did not have a problem with pissing him off. Eventually he began moving around and got his four points. So here we are hanging on to our 6/10. Dr. Sanders decided we needed more monitoring. He was sure that if we stayed on the monitor for 2-3 hours we would see the results we wanted. Like he said, better safe than sorry. So Jason and I were sent next door to TGMC to "relax" and sit on the NST monitor. Of course, as soon as we got there he became reactive. I wasn't even on the monitor 5 minutes and he was giving us good results. Like I said, he was either napping or he's stubborn like his parents! We stayed there for 2-3 hours hooked up to the NST machine to see if he would become more reactive. The doctor came in and let us go around 2:30 saying that everything looked great. The NST did show that I was having a few contractions. Nothing major, of course, but they were showing up on the scan. The doc decided to check me and, whew!, I'm not dilated. I am 30% effaced, but was told it wasn't anything to worry about. So once again our quick trip to the doctor, for a routine appointment, turned out to be an all day event including a trip to labor and delivery. I'm starting to think this will be normal for us.