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.

- 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.

Friday, August 19, 2011

Quick Update

We got a phone call yesterday from Dr. Robichaux's nurse, Lanie, from Ochsner. In two weeks we will have a long day of meetings. We will do all of our pre-admit/registration paperwork, meet with the social worker, see Dr. Robichaux for another ultrasound, and then hold a conference with Dr. Robichaux (Maternal Fetal Medicine), Dr. Ginsberg (Neonatology), and Dr. Cunningham (Pediatric Nephrology). At this time we will be able to sit down with all of them at the same time and discuss everything, and I mean everything, that will happen during delivery and the days that follow. Those of you who know me, know that I will have a ton of questions prepared. I'm interested to see how big our little potato gets in the next two weeks. He sure did shock me at the last ultrasound.

Tuesday, August 16, 2011

After some much needed rest...

You will be happy to hear that this weekend I did nothing! And by nothing, I mean that. I spent the entire weekend relaxing. It was actually quite nice to do that after the overwhelming days I had last week.

Yesterday, however, I spent my day traveling through the state. My two adventurers and I left home and went straight to Baton Rouge to pick up the ultrasound DVD from Woman's Hospital. Ironically, after an hour and half in the car, it only took 10 minutes in the hospital to get our goal accomplished. Then we got back on the road and aimed for New Orleans, another hour trip. The nephrology clinic at Children's closes at 4:00 p.m. and we pulled into the parking lot at 3:45. I admit it was a little nerve-racking, but we made it. Dr. Aviles was not in the office, but his nurse assured me that he would get it. Once again I was in the office for 10 minutes tops. We then had an hour drive home. So 3 and half hours total in the car for 20 minutes of office time. It was well worth it for me, though. Ask the two adventurers I drug around and they may not feel the same, but they are amazing! lol Thank you ladies!  I am anxiously awaiting to hear what he has to say about the ultrasound.

Today I had two appointments. The first was with my OBGYN, Dr. Sanders. It was a standard appointment. Once again, my blood pressure was normal, Parker passed his NST with flying colors and I got my last steroid injection. They are not "effective" after 34 weeks. I was actually in and out of his office in less than an hour today. That may be record timing, or I just didn't ask 100 questions like usual.

My second appointment was with Dr. Robichaux. Luckily, he was at TGMC today and I did not have to travel to Ochsner. He did another ultrasound and measured everything. My fluid is still extremely low and Parker's kidneys are still large. Honestly, we knew that wasn't changing, though. What did surprise us was his size. He measured 6 pounds 7 ounces! I immediately started to ask questions about this. I mean geez, if he is already this big he will be huge! Dr. Robichaux admitted that at first he thought it could have been because of his abdomen being enlarged due to his kidneys, but he said that his head and chest are also measuring big. I asked if there were any abnormalities that they saw on the ultrasound that could explain and he said "No, he's proportional. He will just be a big baby. Does anyone in your family have big hats? He may need them." The good news is the bigger he is, the better. He has to be a certain size for dialysis and he is already at that stage. Dr. Robichaux's nurses will call tomorrow to set up an appointment with us at Ochsner in a couple weeks. This meeting will include Dr. Robichaux (who will deliver), Dr. Ginsberg (the neonatologist), and Dr. Cunningham (the pediatric nephrologist). The goal is that we can all discuss the delivery and be on the same page. I am ecstatic about this and he is the one who suggested it. I didn't even have to ask for it! :) We are going to schedule a section as close to my due date as possible and hopefully we can hold out for that long. If we go early, though, we have all the emergency numbers we need to let them know we are on the way.

I will update again as soon as there is something to update about. Thanks for keeping up with us and the continuous prayers! They are much appreciated!

Saturday, August 13, 2011


Ever had your computer tell you that you were running low on disk space? Well, today that is how I started to feel. There have been many events in the last few days and next week's calendar is already half full; therefore, I started to feel the overload.  My mind and body definitely started to let me know around 6 p.m. when I got home and literally crashed. I think you could have broken into my house and taken everything and the only way I would have known was if you tried to take my pillow and blanket. As a matter of fact, my legs are still sore.

Yesterday we got another phone call from Dr. Nieves' office. More good news if you ask us. The neonatologist that he discussed our case with at Ochsner, Dr. Ginsberg, has asked to meet with us. Now, this is the first doctor that is asking US to meet with him instead of vice-versa, so in my opinion that shows something about him already. This will give us the opportunity to discuss Parker and our situation prior to delivery and helps us reach our ultimate goal. The ultimate goal being that everyone who will come in contact with me or Parker on the day of delivery is well aware of the situation and can be as prepared as possible for each scenario. Basically, the goal is that we will all be on the same page. We have once again made a step in the right direction. We do not know when this appointment will be yet, but I will keep you updated. 

Today, we met with the pediatric nephrologist at Children's Hospital of New Orleans. Going into this appointment, I had my concerns. I wasn't sure he was going to be able to tell us anything that we didn't already know, but he was very informative. He also showed the MOST positivity out of any doctor we have spoken to. After coming in and introducing himself, he immediately started the conversation. One of the first things that he said was "Yes, there are severe cases of this disease where the patient does not survive, BUT many, many patients do survive and they go on to live long lives. Actually, he continued, I have three active cases of this disease right now. The youngest of them is 6 months old." Finally, a doctor who does inform you of the worst-case scenario, but actually shares the positive side with you as well. I've been looking for this type of doctor for three weeks now and here he is! I haven't even gotten to ask him the first question on my list, which was "Have you treated this disease before?", and he's already answered it. I like him already! He reiterated what every other doctor has told us, that Parker's lungs are the first priority. If we can get over that hurdle, then the kidney's can be dealt with afterwards. I went on with my mile-long list of questions after this and felt completely comfortable with him. I asked him about kidney function after birth and he admitted that we won't know until Parker makes his debut. He did, however, say that his kidney's could actually function perfectly fine or it could be so serious that they need to be removed. He shared a story with me about a 12 year old boy, whose case was very similar to mine. He met the mother while she was still pregnant and she had already been diagnosed. To get to the point the boy is now 12 years old and has not required dialysis or transplant, yet. This case was the "mild" side of the disease. So, now the question lingers, will we be on the mild side or severe side? We talked in detail about kidney removal, dialysis, and transplant. There were many, many questions answered on these topics so I will not share each of them. We did find out, however, that Children's has a transplant team after all. They perform 10-14 transplants per year and they have an entire dialysis center. He asked which blood types we have. I have no clue what Jason's blood type is, but I am O-, which apparently is a great thing. I am a universal donor; therefore, there is a higher chance of me being a match. The donor in a kidney transplant undergoes a laproscopic surgery, which is minimally invasive. That actually shocked me. When I imagined a transplant surgery, I thought it would be much more difficult. I imagined being cut wide open and recovering for months, but apparently technology has far surpassed my imagination.

Overall, the events of the last two days have been another step in the right direction for us. I believe that Dr. Aviles will be an amazing addition to our team. He will not be present at Ochsner for delivery, but if Parker needs to be transported to Children's he will be ready and waiting. He is also my choice for a long-term nephrologist.

He requested a dvd copy of our ultrasound from Dr. Diket's office so that he could look at Parker's kidneys himself. So bright and early Monday morning I will be traveling to Baton Rouge to pick up the DVD from them. Tuesday I have a day filled with appointments once again. My OBGYN in the morning and Dr. Robichaux in the afternoon. Thankfully, Dr. Robichaux will be in Houma so I will not have to travel all the way to Ochsner in New Orleans. Oh, and Wednesday I have a date with the AT&T installation man. He better show up this time! So as you can see, my schedule is already slap full. I am enjoying my lazy time this weekend while I can.

Wednesday, August 10, 2011

Going above and beyond..

So I know I said I wouldn't update until Friday, but I am truly moved by the actions of a specific doctor. Therefore, I thought he needed to be praised for all of his work. Throughout this whole process of learning about ARPKD I have been on my own doing research and contacting doctors. Sometimes I can ask for a referral from my OBGYN. Other times I call on my own, crying and begging, for someone to please consider our case. Yes, I know how pathetic that may sound, but desperation changes things.

Well, Dr. Nieves, who is the head of Neonatology at TGMC, has gone above and beyond for us. When we met with him on Friday he was amazingly honest with us about what TGMC could do for us. He suggested we choose another facility unless it was an emergency situation. During the meeting he also mentioned that he would e-mail other neonatologist's that he was in contact with at Tulane and Oschner. Now,  I have been known to be "naive" and believe a lot of what people say, so I took his word for it and was so sure he would follow through. My husband, however, is always the skeptic, and simply said "No other doctor has done this for us yet, I can't get my hopes up that he will." I guess this is how we balance each other out. Well, low and behold, my phone rings on Tuesday afternoon and it is Dr. Nieves personally calling me. It is not his nurse, assistant, or the women's center coordinator. It is HIM and I am shocked! He told us that he got an e-mail back from Dr. Gordon (neonatologist at Tulane) and informed us about all of the things Tulane could offer us. Well, today, while we were finally taking a break and had no obligations, the phone rang again. I thought twice about answering it, especially since I didn't recognize the number, but with everything going on I'm not taking any chances. To my surprise, Dr. Nieves was on the other end of the phone AGAIN! He heard back from the head of neonatology at Ochsner and after comparing the services of both hospitals, Ochsner has ventilators and dialysis programs that Tulane may not. He stayed on the phone for a little while explaining in detail the vents and types of dialysis that they had so I could better understand. We also learned that there is NO pediatric transplant team in all of Louisiana. So, if by god's grace we get the opportunity to give Parker a transplant, we will have to travel a good ways. Of course, that is the least of our worries! After the phone call ended I still could not get over his generosity.

Over the last few days, Jason and I have discussed what he's done for us several times. The irony of it all is that he is the one doctor that we have not had to pay. The meeting that he held with us was just that, a meeting. He did it to put our minds at ease and we were not charged a dime. Yet, he has made me feel like he is willing to go above and beyond.

Tuesday, August 9, 2011

Are those contractions?

So this morning began with yet another doctor's appointment. Now as much as my husband has and always will loathe a doctor's office, my calendar is full of them now. By the way, in the 7 years we have been together, this pregnancy was his first time I've ever known him to visit a doctor. So that should give you some idea of what I'm getting at. We began the appointment with another NST to monitor Parker. For those of you who are not sure what an NST is, they put two round monitors Velcro-ed tightly to your belly. One of them monitors for baby movement and contractions, the other keeps track of Parker's heartbeat and shows whether he is being "reactive" or not. While it is monitoring you, it prints the results on a long sheet of paper and you can watch his heartbeat go up and down (which it is supposed to), and if you have contractions or not. So the nurse hooked us up to the monitor and said I'll be back to check on you soon. Typically these tests last 15-20 minutes. A few minutes later, the nurse popped back in and asked how we were doing. I, of course, had been watching the monitor intently and said, "I'm not sure.. Are those contractions?" Inside, I was beginning to freak out, thinking "I'm only 33 weeks", "If they are contractions, they better haul my butt to Oschner." "The ATT guy is coming this afternoon, If I'm going to Oschner.. I have to cancel him." (Darn ATT guy never showed up today by the way! argh!) The nurse said, "Well, you are definitely having movement, but I wouldn't call these contractions, yet. Let's let the test finish." So when Dr. Sanders comes in he says I know what you're thinking, but first off these are not labor contractions.. "Whew. Thank God!" He said it does look like Braxton Hicks or "pubic irritability", though. (Whatever that means). At this point, I'm not worried, cause I'm not in labor. :) 

It is sort of funny that he knows me so well now that he did know exactly what I was thinking. Our appointments with him have become more of a question and answer session or a conversation if you will. We discussed delivering at Oschner and a scheduled c-section in great length. Both of which he agreed with. He said that he did not think Dr. Robicaux would object or "show resistance" to either of those things. He also mentioned that while on a conference call with Dr. Robichaux last week, Dr. Robichaux had asked about us and how things had been going. So he is keeping up with our case already. He told Jason that if I even thought I was in labor to put me in the car and get to Oschner as quickly as possible. So back to the crazy car going down the interstate, It's just us! We talked about what we heard from Dr. Diket last week at Woman's, Dr. Nieves in the NICU at TGMC,  and our upcoming appointment at Children's Nephrology department. It seems as though we have a "team" now working together and consulting with each other. That sort of puts me at ease. He did say that Dr. Robichaux will want to see me soon and that I will need to pre-admit at Oschner. I had already figured this, though.

Lastly, I asked him a question that has been on my mind for a while. Some of you will laugh, because you already know I have been dreading this for weeks or months now, not just since our journey with ARPKD started. HURRICANES. So now we are in a totally different state of "what do we do?". Quite frankly he said anything minor, get a hotel as close to Oschner as possible. This would be the Brent House Hotel. Anything where New Orleans will be evacuated, (and subsequently the hospitals too) get to Baton Rouge. (That's where he will be.) So if this situation occurs and you need me, you know where I'll be!

Yet another long list of questions has been answered. It seems like once I cross them all off, I start a whole new list. Next stop on this journey is Children's Nephrology Dept. on Friday. I will update you then!

Sunday, August 7, 2011

Baby shower blues..

So yesterday was the day we were supposed to be celebrating with family and friends for our baby shower. After the whirlwind of emotions we experienced in the beginning of this journey, we decided to put that event on hold. I know that we made the right decision when doing this, but I would be lying if I told you that I wasn't a bit disappointed yesterday. While doing housework I couldn't help but think.."I should be getting dressed" or catch myself daydreaming of the cutesie baby things we would be oohing  and aah-ing over.  So, to be honest, I was quite a grump yesterday.

Friday we met with the Neonatologist and the coordinator of the Women's Center at Terrebonne General, our local hospital. Dr. Nieves was quite honest with us and I completely appreciated it. Jason and I never mentioned that we were considering delivering at another hospital. We wanted to hear him out and see what he had to say before we told him. Low and behold one of the first things he said after I began my list of questions was that he didn't believe TGMC was the best facility for us. He continued by saying that in an emergency situation that they would do everything they could for us, but being that we are aware of the services we will need, he suggested delivering elsewhere. Now, Jason and I had already pretty much decided on this, but this meeting was scheduled long before we came to that decision so we went anyway. I mean at this point I'm covering all of my grounds. So, if an emergency situation happens and I HAVE to be brought to TGMC, they know me, my situation, and what we want. (I am determined to make it to Ochsner, by the way, so if you see a vehicle driving like a crazy person down the interstate, don't worry it's just me being chauffeured to the hospital! J/J) So now our goal for Tuesday, when I go to my weekly OBGYN appointment, is to start the process of Dr. Robichaux taking over our case and having our delivery moved to Ochsner instead of TGMC. Hopefully this will not be a difficult process.

Friday I was presented with a question that may also help some of you reading this. A fellow teacher mentioned that they have been praying for us, but wanted to know if there was something specific that they should be praying for. The answer to this, is yes. As of right now we are praying that Parker's lungs had a chance to develop. If his lungs are too underdeveloped, putting him on machine assistance will be difficult and possibly even impossible. If his lungs are too underdeveloped, they will appear "transparent" and any machine that could assist him would risk putting air leaks in his lungs. So to those of you who may have been wondering the same thing, we accept any prayers you are willing to give, but his lungs are our first priority right now.

Thanks again to everyone for everything you have been doing for us.

Thursday, August 4, 2011

Crossed another hurdle..

Well this morning started off with wonderful news! The nurse from Children's Hospital of New Orleans- Pediatric Nephrology Department called me back, finally. My mother always told me that when the lord called for those who wanted patience, I did not run to the front of that line. (She's right by the way) So you can imagine what the last week has been like waiting. It did take some self-control not to call and nag them, though. Oh back to the story! The doctor has agreed to take our case and will see me next Friday at 10:45! You can only imagine that this news made me ecstatic. The nurse even did my pre-registration information over the phone so I will have less to do when I get there. She also gave me a huge relief by saying that my insurance will not have any problems, because low and behold Children's carries the same insurance company so we should be well covered!

After receiving all of this wonderful news, I went to get my second steroid shot with Dr. Sanders (OBGYN). I do have to say that the second one burns a lot less than the first. I told the nurse about everything that happened this morning and she took their contact information. She said that she would go straight to sending them ALL of my records so that the doctor's at Children's could have the week to look over them if necessary. This helps me out tremendously. The staff at Dr. Sanders' office has been extremely accommodating and helpful.

My busy day of errands, that seem to never end, was then followed by a trip to the School Board. Here, I filled out all of my extended sick leave paperwork and spoke to someone who was extremely informative about all of my options. After hearing from her, I feel much more secure in knowing that I am in good hands and have plenty of options that will allow me to take as much time as I need.

So all-in-all, today has been filled with good news and success, on my part, in getting things done. The only thing that worries me is the saying that "good fortune can only last so long". For the last week, it feels like things have been starting to fall into place for us with doctors, work, and insurance; therefore, how long will this last?

Please continue to pray for us. Your support has been amazing throughout all of this. If we have not returned an e-mail, message, comment, phone call or anything else, we are truly sorry. The outpouring of support has been overwhelming and we have not had time to get back to each person, but know that we have received it and are grateful for everything.

Tuesday, August 2, 2011

A very long day...

My day started bright and early this morning. My first appointment was with my OBGYN, Dr. Sanders, and went well overall. He answered a few more of our questions and concerns, the heart rate was 140, and he did a non-stress test on Parker. Surprisingly, the doctor came in afterwards and said it was the best results from an NST he had seen all morning and that Parker passed with flying colors. So far, so good.

Immediately after that appointment we took off to Baton Rouge, and after an hour and a half drive, we arrived at Woman's Hospital. Dr. Diket, our second Maternal Fetal Medicine doctor, did another high-resolution ultrasound and told us the same facts that we had already heard from Dr. Robichaux. Parker's kidneys are enlarged and are not functioning. This is the part of the story, however, where Dr. Diket shows a more positive outlook than our previous experience. He went on to say that this is a secondary problem that can be fixed with dialysis and a transplant. Parker's lungs, however, should be our first concern. With all of modern technology, though, there is still no way to tell how developed his lungs are and if they will be able to function on their own until he is delivered. Dr. Diket gave us hope by saying that if Parker had fluid around him at the crucial time for lung development (20-24 weeks) that he had a good chance of having his lungs developed enough. One major change from two weeks ago was that now I have NO fluid. Yes, I lost all of my fluid that fast. Dr. Diket also approved the steroid shots that I have been pushing for. He agreed that there is a large chance that the shots will not help, but that they also will not hurt anything. Well, my theory is that if they will not hurt anything.. then I will take them and the very slight chance that they may help. So tomorrow at 11 a.m. I will be at Dr. Sanders' office receiving my first round of steroids. I believe the plan is to continue them once a week until 34 weeks.

So for now we will have to wait and watch until delivery. He also said that we should start thinking about our options for delivery. Our hospital does not have the capability to perform dialysis for Parker and it is a 55 minute transport to Children's, should he need to be moved. Dr. Robichaux, who delivers at Ochsner, has taken over cases like this before. Ochsner has dialysis capabilities and is only a 10 minute transport to Children's in case Parker needs to be moved. So when we meet with the NICU team at Terrebonne General on Friday we will present them will all of these questions (and many more) and then make a decision.

On a final note, those of you who have encountered me in the last few days (whether on the phone or in person) excuse me if I was short. I have had a long couple of days, am overwhelmed, and am tired. I'm thinking the phone may be shut off for a little while just so I can get some rest and alone time.

Thanks to everyone for the continued support and prayers. We still have a long road ahead of us and will continue to need them.