Joseph Gets a Day Off

So yesterday Joseph had his eighth sugery and had an additional 19 cm of bowel removed. That equals about 7.5", which brings his total to just over 30". Right now he still has enough bowel to get the job done, but he is approaching becoming a gutless wonder. The doctor had planned to do another procedure today, but after checking the condition of his silo, she felt confident that Joseph could have a day off for the first time this week. With any luck, Joseph can remain stable for the next 24 hours.

Emily has had a busy 2 days. She traveled home to Elgin, and then visited her Great Grandpa Ray. Today, she had a visit from her first cousin, once removed, Jay, whose family added a baby of their own one week before Emily and Joseph appeared. Jay said "Wow, She really is the cutest baby ever! Please don't tell anyone I said that because it will get me in trouble." (oops, he didn't really say that) After visiting with Jay, Emily began preparations to go to her first ever New Years Eve Not-A-Party.



Here are some photos of Emily with her Great Grandma Pauline and also her Great Grandpas Bob & Ray. Here is also one super cute picture that Christa took of Emily napping with her daddy.

More of the Same

To be brutally honest I don't have much to say tonight, all of you in the peanut gallery can stop laughing. Today Joseph had his seventh surgery and it looks like tomorrow will be his eighth. Dr Statter removed another 26 cm of bowel today, 10.25" which brings our total to 22.75". She says he still has enough bowel left, but lets face it this kid is running out of guts. On a lighter note, my sister Sandy was concerned that following his splenectomy (spleen spleen spleen) he would have difficulties in life when angry due to his inablility to "vent" his spleen (wheee, spleen spleen spleen). Well there is good news! Joseph still has a small auxillary spleen (spleen spleen spleen). So, when angry or annoyed, he will just have to vent his small auxillary spleen (OK, that is almost as much fun to say as spleen, spleen spleen spleen!). I find that in situations such as this you find the silver linings where you can (small auxillary spleen small auxillary spleen small auxillary spleen ).



In an effort to pander to my audience who may be looking for "cute" amid all the medical mumbo jumbo and spleen (spleen spleen spleen) talk. Here are more pictures of the cuter every day EMILY!!!!

The Ups and Downs of it

So, in my life there have been many times that I could have described myself as exhausted. I now know just how wrong I have been. Thinking back, I know that I was tired during my time at Ft Knox, I am pretty sure there were other times in college. I know that I had my days working in the restaurant, doing the close, open. I am sure that I was tired in my days working night security, and in the factories on the night shift. None of that comes even close to having one newborn at home and the other in the NICU. While I know how I am feeling I can't even begin to image what this has been like for Joseph. I know that in all reality he will never remember what he is going through, but I know how I feel now and how I have felt after surgery and I know that it can't be easy. Including the two he had today, more later, he has had SIX surgeries since Friday the 15th, and that doesn't include being born cuz that was Christa's surgery. He is a tough little guy, but as we have been told and until now it didn't really sink in, this is not just an uphill climb, it is a series of BIG ups and downs. Yesterday you may remember seemed like a turning point, a really big up. That all changed very rapidly this morning at the bright shiny hour of 3:30 am.



I received a call from the resident assigned to Joseph overnight that the bowel in the "silo" was not looking good and that Dr. Statter was on her way to evaluate the situation. Ten minutes later I was giving her a phone authorization to do a surgery on Joseph. The resulting surgery removed 2 cm of bowel that had "died" from inside the "silo." Since I had left him earlier in the evening his saturation levels had gone down and while all the parts inside were getting oxygen, none of the stuff outside was getting enough. We came back in at around 10:00 am this morning and he was looking OK, though his "sats" were still kind of low, they had also returned to the previous day vent levels and put him back on the dopamine which they had been weening him off of (yes I know it is spelled wean, but I like my way better, ween ween ween ween). We were also told that Dr Statter would be coming in later in the day to remove the cannulas from his neck. No sooner were we told that then the OR team came in to start prepping the area for surgery. Then here comes the Dr, who tells us that she may need to remove more bowel as it is still not looking the way she wants it.



After about an hour and a half she came out to talk to us, she removed the cannulas and that went well, she also removed an additional 30 cm of bowel. This makes for a total of 12.5" lost today, and two additional surgeries. I tell ya, this little guy has been through the wringer and he is still fighting. It took about another hour or so but he is back to being stable. On a scale of one to ten today was about a 4.5, yesterday was an 8 and Tuesday was a 1.5. Joseph is really fighting but the odds seemed stacked against him. We haven't even begun to deal with the heart defect, the doctor today seemed to feel that we shouldn't make any changes for right now, just let him be stable and recover from the last couple of days, I tend to agree with him.



On a brighter note Emily gets cuter everyday. She is working very hard on holding up her head, and wrapping me even tighter around her little finger. Here are some photos to give you all a cute fix, to keep ya comin' back.



Steve

Look! Its my nose!

LALALALALA, I can't hear you!

Big News Today

Well like the headline says, there is big news to report today on Joseph's progress. In an effort to stop the drainage from his chest tube the decision was made to start to ween him off of the ECMO pump today. The reason behind this decision was that until he is off of the heparin the bleeding won't stop and they really wanted to slow down the amount of blood products he is getting to ease the stress on the parts of his body that filter blood. In fact this is one of the reasons he lost his spleen (man I still love that word! Spleen spleen spleen spleen!) when Dr. Statter went in to remove it, it was FIVE times as large as it had been which is why the cracks had refused to stop bleeding, they were being stretched out. Anyway, enough about the spleen (spleen spleen spleen spleen, bwahahahahaha). So at around 11:00ish am they started the ween (come to think of it ween is pretty funny too, ween ween ween ween!). At 4:20 this afternoon (yesterday at this point but I am still going to call it today because I am still up, so I guess you'll just have to figure that out on your own, except I just explained myself, well you know.) they clamped Joseph off and started to make determinations about what to do next, how was the heart, the lungs, what to have for dinner, what movie should we go see this weekend, hey what are your plans for new years, yada yada yada.

One of the things they were really concerned with was his PDA (Patent Ductus Arteriosus) which is the little valve in your heart that allows your blood flow to bypass the lungs while still in utero. For most people when they are born this valve closes and blood goes straight to the lungs, in fact it is the reason they used to slap babies on the butt, to close that valve. Joseph's PDA is still open, which is a good thing, they want it open, in fact they were willing to operate to open it if needed. Well they did an ultrasound to check that it was still open and are giving him extra medicine that will keep it open until they want to close it. It is still a possibility that they will operate to insert a shunt that will make it even larger if need be. So after determining that it was open and that his heart could handle the load, and that his lungs were doing an OK job to oxygenate his blood, they decided to remove the pump! So at 7:00 pm they cut the pump away from Joseph. The tubes will stay in his neck for the next 24 hours just in case they need to put him back on, but the pump is gone and he is doing it on his own. He is however still on a ventilator.

Speaking of the "vent" when I went back this evening at 11:30 to say goodnight to the little guy, his nurses told me something very cool. His blood gases have been so good, they are starting to ween (ween ween ween ween) him off of the ventilator! All of this is very good for Joseph, he is doing considerably better today than yesterday.

I would like to thank everyone who has been praying for Joseph, and the rest of us. It means a great deal to me that people, even those who have never met us care this much about us. So thank you for your prayers, and keep 'em coming, we aren't out of the woods yet but the trail is much clearer.

Steve

Joseph's Loooong Day

As I mentioned earlier today (yesterday) was the day of Joseph's surgery to repair the CDH. Preparations for that procedure started at around 9:30 am. Things went mostly OK, when they went in more than what they expected was up in his chest cavity. Things they found in there included his stomach, spleen, small intestine, large intestine and $1.47 in loose change. They were able to get everything out and patch the hole with a piece of Gortex. They were not able to get everything back into his belly, and had to put a portion of his small intestine in a "silo" outside of his body for gradual replacement later as space became available.



This is actually where his problems begin. After the procedure was over they began to notice a significant amount of drainage coming from his chest tube. After replacing his blood volume 1 3/4 times (thank you all you blood donors) they needed to determine where the bleeding was coming from, so the surgeons went back in for his second surgery of the day. They found that there were some cracks in his spleen that were still bleeding and efforts were made to stop the bleeding, no small feat while still on blood thinners, and save his spleen. Now you may be asking yourself, why bother saving the spleen, isn't that one of the organs we can do without? The answer is yes, if you or I had our spleen taken out it wouldn't really matter to our lives except with the addition of a really cool scar. However, for a child under two years of age the spleen is a very important organ as it has a role in fighting some pretty serious infections. This is where I need to explain my last post. You see, I have long believed that spleen and splenectomy were two very funny words, and I am not the only one. Many TV and film writers also find those two words funny and you will find them not only in medical comedy but also used in dramatic productions as a kind of comic relief. If you don't believe me, watch ER or Scrubs, you will find that in moments of need, someone always loses a spleen, but for Joseph this was no laughing matter. I hate it when real life intrudes on entertainment.



Anyway, after this second surgery things were looking pretty so so. We were sort of relieved, we even entertained the thought of going back to the Ronald McDonald House (again huge thanks here) to get some rest, take a shower etc. The bleeding had slowed down and it looked like he might keep his spleen (even now that word is still pretty funny). Christa and I went in to say good night to Joseph and tell him to keep fighting. While we were in with him we heard people talking about his chest tube, and the next thing I know Christa is on the phone with the Doctor who is telling her that she has called the OR team back in and she would be coming in to do the splenectomy. All of a sudden our world was back upside down.



We went back out to the waiting room to do just that, wait. Let me tell you that this is not an easy thing to do. You are doing everything in your power to try and remain positive, but doubt is always there. You try to not think the worst, but in trying to avoid it you are actually thinking it. My heart goes out to everyone that has been there and I pray that no one else ever has to go there, to be honest, as I write this I am completely drained, physically and emotionally. Well at around 11:30 pm the doctor came out to talk to us. The splenectomy was a success, Joseph is now spleenless (even now still kind of funny). He will be taking penicillin everyday for the next couple of years and even a small fever becomes pretty serious (becoming less funny). His chest x-ray looks very good, the large lung is doing well, his heart has moved back to the center, and his small lung is beginning to expand. His color is coming back and the bleeding has stopped. With the removal of his spleen, more of his small intestine fit back inside although some is still in the "silo."



We have gone back to the RMH for the evening and will visit Joseph first thing in the morning. He is stable for the night. I really appreciate the dedication of his nurses and doctors. All of the personnel that took over his care at 7:00 am were still there when we left at almost midnight. This group of dedicated professionals has really cared not just for Joseph but also Christa and I. I cannot say how much they mean to my family right now. A big thank you goes out to his surgeon Dr Statter who worked tirelessly to fix his problem and also save his spleen. While unsuccessful in that regard she has so far been successful in something far more important, saving his life. For that I will be eternally grateful.



http://www.uchospitals.edu/physicians/mindy-statter.html

Important Lessons

Today I learned an important lesson. Something that is funny on TV can, in real life, be very very serious. Without going into many details now, please continue to pray for Joseph. When an actual outcome is available I will post all the information I have.


Steve

More about Joseph

When last we spoke Joseph had just finished his first dry run coming off of the ECMO machine and was going to do it again the next morning and get an ECHO to help the doctors decide what to do. Well, he did get clamped off again at about 8:oo am, and was able to get the ECHO so that they could look at his heart and make some decisions. This is where the fun begins. You see, Joseph has two groups of doctors making decisions about his treatment, the surgeons who will be fixing the CDH, and the Cardiologists who are watching his heart condition (more on that later). After successfully coming off of the ECMO for the second time in 24 hours there were two different opinions on what to do, and Joseph wasn't helping to make it easy. It turns out that they were kind of hoping that he would react in a way that told them what was having a greater effect, the CDH, or the heart. Well, he did so well both times it was not 100% clear what the next course of action should be, do we take him off and do the surgery, or leave him on? Well the cardiologists were worried that the root of his problems was the heart and he should stay on ECMO for the surgery and watch the heart after, the surgeons wanted to take him off and do the surgery without the Heperin in his system


After much discussion, it was decided that it would be best to do the surgery while still on ECMO for a couple of reasons:
1. After coming off twice, he has shown that he can tolerate it pretty well.

2. We still aren't sure if the CDH or the Heart is the bigger problem.

3. Once you come all the way off ECMO you can NEVER go back on.

4. If the real problem is the heart, and you come off for the surgery, things could go south.

5. To find out what the real problem is you need to eliminate one of the variables, ie the CDH.

So, the surgeon will be doing the surgery tomorrow, December 26. We needed to wait until Joseph got rid of some of the excess fluid he has been carrying since going on ECMO. He has been on a constant Lasix drip to encourage him to dry out. The surgeon said she would wait until he was a raisin, the nurses all said that she likes her patients to be "blowing dust" before she'll operate while on ECMO. So since Friday he has been dumping fluid like crazy to get ready to have the surgery.

All of that being said, I think it is time for a little more information on the problems Joseph is facing. With the help of one of our letterboxing friends, Wisconsin Hiker, I finally found a good site to describe a Congenital Diaphragmatic Hernia (CDH).

http://www.pedisurg.com/PtEduc/Congenital_Diaphragmatic_Hernia.htm

Here are the pictures from that site:

This is what Joseph's insides look like.

This is what they should look like.

Tomorrow the doctor will make an incision on his left side, just below the rib cage and begin to pull the organs back down to where they belong. After everything is back in place, she will repair the hole in one of three ways. If the hole is small enough, she'll just sew it shut. If the hole is larger, she will use a material (whose name I forget) to patch the hole. If this material, which is kind of floppy, is too difficult to work with in Joseph's situation, she will use Gortex, that's right, Gortex. (And you thought it was just for jackets.) After the operation, Joseph will still be on ECMO for about 3 more days. We do have to watch for bleeding because we are doing the surgery while loaded up on Heparin. Our surgeon is very confident that things will go well.

You have heard me talk about Joseph's heart condition. The presence of this heart condition is what is complicating the issue. The name of this condition is Pink Tetralogy of Fallot. The cardiologists describe this as kind of "eh" and say that if you're going to have a heart condition, this is the one to have. You might be asking if this is no big deal, why is it an issue? This is best answered with this description, if you have one small problem it's no big deal, but if you have two small problems, it becomes a greater issue. With the "Tet" and CDH we have two small problems that are a greater issue. The heart condition is difficult to describe, except to say that it involves two holes in the heart, an obstructed flow out of the heart, and a strangely positioned aorta. A much more in depth description can be found here:

http://www.nhlbi.nih.gov/health/dci/Diseases/tof/tof_what.html

Here are some pictures illustrating this problem.

I hope that this helps describe the issues that Joseph is facing. He has fantastic doctors who are VERY good at what they do, not to mentioned some very dedicated nurses & ECMO techs. We are going to spend the night trying to rest up for tomorrow, provided that Emily will let us. We hope to report good news tomorrow afternoon.

One Week Old and What's Up with Joseph.

Joseph and Emily are one week old today. By the time most of you read this, it will be tomorrow and you will think that I don't know what I am talking about, but I have until midnight to celebrate.

Joseph celebrated one week in a very special way. Today was a big test for him and I am sitting at his bedside waiting for the results of a blood gas to determine if he is officially OFF the ECMO machine. They started weening him off at about 2:30, by 8:30 he was at 40%, at 9:30 they clamped him off, and sent a blood gas off at 10:00 to see if he is doing well on his own. I am going to keep typing until the results come back because I am admittedly a little nervous. If the big guy can handle this he will have his hernia surgery next week, if not he goes back on and will have his surgery tomorrow while on ECMO. Clearly this is not the best option because to be on the bypass he needed to be on Heparin to thin his blood and keep it from clotting while going through all of the equipment. If he has the surgery while still recieving treatment there is a very serious risk of complications. We are definately hoping for staying off ECMO for the surgery.

Some of you may be wondering what problem he has that is causing all of this to be neccesary. Joseph was born with a Congenital Diaphragmatic Hernia, which in normal people speak is a hole in his diaphragm. What makes this bad is that his stomach and some intestine poked up through the hole and restricted the growth of his lungs. This compression caused the lungs to have difficulty oxygenating his blood due to pulmanary hypertension. The ECMO machine pulls the blood out through a vein in his neck runs it through a pump that gives it oxygen, cleans it, warms it and puts it back through and artery in his neck. I know that it sounds just terrible, but by removing the blood and bypassing the heart and lungs it gives them a chance to rest and relieve the pressure.

All of this comes to a head right now as we wait for the doctors to make the decision, his blood gas just came back and it looks good, but they may want another one, or they may take him off based on these results, they may give him a quick blood transfusion and then check again. I am just waiting for the word................................................................................................................
aaaannnddddd its too late to do all of the tests that they want to check, so he is going back on ECMO until about 4:oo am which will have him back to this point at around 8:00 am. We get to do this all over again tomorrow, ugh! So we wait, he did a good job tonight, and I am sure that he will be a champ again tomorrow.

The Following is a picture of the ECMO Machine and Joseph.

You don't have to look at this if you are squeamish.

World's Cutest Babies

O.K. I know that you are thinking I am a little biased because they are mine, but I'm not, they really are the world's cutest, I checked. If you don't believe me check out these pictures.

Look at that little angel

A little perspective on size of those dainty little fingers.

She just loves the Bling Bling, she had to try on Daddy's ring!

Look at those BEAUTIFUL eyes!

Here is a little bit of Joseph.

He gets those "Finger toes" from someone who will remain nameless *coughmandycough*

I am working on a post to explain exactly what is going on with Joseph, I can tell you that his doctor's and nurses are all very happy with the way his treatment is going. I am working on how I can lord the amount of trouble he is causing over him when he gets older.

Just a note for Amy, I am sorry to tell you that Emily is a real snuggler, she just has to be held, I know that this will be a disappointment for you in February, I hope that you can find it in your heart to hold her to make her happy.

More Later,

Steve

THEY'RE HERE!!!!

Well the wait is over, Joseph, and Emily Bellock came into the world yesterday 12/14/06 at 2:36 pm and 2:38 pm respectively. Both babies are doing well, all things considered and Mom is doing pretty well. She slept ok last night, though the constant wiggling in her belly has been replaced with seering white hot pain. She is mulling over whether or not to forgive me for, "doing this to me."

Joseph Roy Bellock, was born at 2:36 pm weighs 5 lbs 16 oz (yeah, I know but that is what they keep saying) he is 18" long, stunningly handsome and will be starting at Harvard in the fall. Seriously, he had a pretty good night in the NICU and was put on the ECMO this afternoon.



Speaking as his father, I have to say I am happy he looks more like his mother than his father. In this picture you can see that he is on a ventilator and is being monitored pretty closely.


Those are mighty big feet for such a little baby.




A little out of focus, but ya gotta cut me a break here.


Emily Joy Bellock, born at 2:38 pm was 5 lb 5.8 oz and is 18 3/4" long. She is BEAUTIFUL, and is fielding several modeling offers as we speak. She plans on modeling while she attends Yale in the fall. She is doing very well, and spent part of the night working on her singing voice in Christa's room. I can say that she sings to the back of the house without any difficulty.

Emily as you can tell looks just like her mother, twins seperated by 30 years.

Just chillin' after being born, love the hat. What you can't see is that she is being punished for crimes committed in Utero. She is wearing an anklet similar to the one that Martha Stewart wore after her release. We are appealing the probation.

Soooo Big!

Hello again.

Many of you may be wondering just how big is Christa getting these days? The simple answer is HUGE! These photos are clear evidence of that, you can't really tease her though, especially when you consider just how big these two babies are right now.



At our ultrasound last week, Twinkie tipped the scales at 5 lbs 12 oz, and her brother Ding Dong weighed in at 5 lbs 3 oz. It should be noted that Ding Dong's weight is somewhat less accurate due to the problems he faces, so he could actually weigh a little more.

How do they get the weight you ask? It is quite simple really, they take measurements of the crown of the head (circumference), the abdomen (also circumference and the reason Ding Dong's may be off), the Femur (length), and Humerous (length). All of those measurements are put into some magical equation and viola! a weight is determined.


As of Friday, December 8, 2006, Christa will be 37 weeks. This is a very important milestone because it means that the babies are basically done doing what they need to do. The rest of the time they spend in there is really just bulking up. I have been trying to get Christa to swallow some dumbells so they can workout until next week, but she doesn't seem to think that it will work the way I think it will. She tends to be very uncooperative on some of these ideas.

I would really like to put Christa's size into perspective for you as our children do their best to get even bigger before the big day. For starters she is no longer able to drive her car, not because she doesn't have anywhere to go, but because to get behind the steering wheel she has to put the seat so far back that she can't reach the pedals!! She can reach the pedals if she moves the seat forward, but then she doesn't fit behind the wheel.
I know that most of you have never been to our house, but I feel the need to mention that she also no longer fits through the entry into the kitchen. We do have a very small kitchen, with narrow passages, but I fit through quite easily. (It should be noted that the kitchen in these pictures is not ours.)

One of the more interesting developments, apart from the babies of course, is the fact that she can no longer put on her own socks and shoes. This simple fact means I have complete control over whether or not she can leave the house, bwahahahahahahahahahaha!! I am doing my best not to abuse this new found power. I am sure that this is really good practice for when I need to put shoes on two children, I just hope that their feet aren't as big as someone we know. (Right Mandy, hee hee)

We do consider ourselves very lucky that although she needed to leave work back in October, Christa has not technically been on bed rest. Our doctor told us to use the guideline, "If you don't HAVE to do it, don't." Christa has applied a very broad definition to this piece of advice. She treats it more along the lines of, if you don't WANT to do it, don't; but if you REALLY want to do it, O.K. This of course never seems to apply to me, as the honey-do list gets longer everyday.

Christa's mother wanted me to be sure to let people know that we are not naming the kids, Twinkie and Ding Dong. I told her that everyone knows that we are not "Hollywood Types," or "Rock Stars," but I would set the record straight. For the record, I know that Twinkie and Ding Dong do not make good first names. That is why those will be their MIDDLE names. The children will have very proper first names, Snickers and MilkyWay. I mean really, I am not some kind of idiot. I will admit that for a while we did consider Almond Joy and Mounds.

Until next time...Steve

The Day Nears

Ding Dong, our little boy, in one of his FEW cooperative moments.

Twinkie, our little girl, smiles for the camera

The Twins pose for their very first group photo, also the first image we saw.

The date has been set, so mark your calendars (AQ or otherwise) for December 14 at 1:00 p.m. This of course is only if the babies don't have their own plans. So far things are going well according to the doctors, who seem to be multiplying at an alarming rate. The MD rundown is: 3 O.B's, 1 Pediatric Cardiologist, 1 Pediatric Surgeon, 1 Genetic Counseler, and a Partridge in a Pear Tree.

As of today, THE NURSERY IS READY!!! Christa and her mother put the finishing touches on today. I am sure you will agree that everything looks fantastic.

Ding Dong's side of the room.



Twinkie's side of the room.



The site of many future diaper changes.

More news to follow,

Steve