What do you say?

So I realize (with a little help from my friends) that my last post may have left some of you feeling like you don't know what to say to me.  I'm sorry.  I'm scared and overwhelmed and frustrated and excited and need to be able to express all of it.

But you know the right things to say to someone who is about to have a baby.  And you can guess the right things to say to someone with a child in the hospital.  And I can think of nothing better to help me remember what a blessing Maddie is then for you to remind me of how special she is and how much you are looking forward to meeting her and kissing her and holding her.

We are so blessed to have your love and support and prayers.  And I am thankful that you read this blog and let me pour myself out into it, even if sometimes I'm a total mess.

Plurality of Man

So i just reread this, and i'll warn you, I'm in a cynical mood and this is not a happy blog.

Paul the Apostle talks about being a slave to sin and not wanting to be in Romans 7. Its a verse I've really struggled to understand over the years.

The trouble is with me, for I am all too human, a slave to sin. I don't really understand myself, for I want to do what is right, but I don't do it. Instead, I do what I hate. But if I know that what I am doing is wrong, this shows that I agree that the law is good. So I am not the one doing wrong; it is sin living in me that does it. And I know that nothing good lives in me, that is, in my sinful nature.  I want to do what is right, but I can't. I want to do what is good, but I don't. I don't want to do what is wrong, but I do it anyway. But if I do what I don't want to do, I am not really the one doing wrong; it is sin living in me that does it. I have discovered this principle of life—that when I want to do what is right, I inevitably do what is wrong. Romans 7:14-21 NLT


And i have to say, that is about how I feel about myself right now. I want to be excited that it's almost time to meet my little girl.  Most people have the same reaction when they ask and hear that her due date is just around the corner - aren't you so excited!  almost time! bet you can't wait.  And biologically, I want to be done being pregnant.  No doubt about that.  But I still want to scream - DON"T YOU GET IT????  shes safe inside of me.  she doesn't have to have surgery or tubes or medicine or feel pain or anything.  she loves the sound of my voice right now and pushing her butt up against my touch.  all of that changes the second she is delivered.  there is an evil lurking inside of her that is going to make her hurt and shes going to go through more in her first 30 days then most of us will in a normal lifetime.  so i can relate to Paul - I want to feel so excited and happy and anxious but I can't.  when i want to feel what is "normal", I inevitably feel scared and overwhelmed. 

its only within the last few weeks that i've become optimistic enough to believe the statistics the doctors have been given us all along and that she will actually come home one day.  i'm no where near feeling ready or happy about helping my baby girl and my family through this process.  My love for Maddie is not diminished becuase of the CDH, if anything, just the opposite.  But my fear of her battle against CDH is so great that I can't get beyond it and start feeling what is "normal".

So onto my next rant - 1000 Letters for Maddie.  I'm going to postpone this goal inevitably.  It was a great goal for me to set and a cause I still believe in wholeheartedly.  And it was a cause I needed to focus on for a few weeks when things were really impossible for me to wrap my head around. But the amount of effort I put into it versus the response I got was disappointing.  Not from you - i'm sure if you are still reading this blog you supported us by sending in at least 1 letter for CDH babies.  I've decided that I need to carry forward under the delusion that everyone I know and love and have some sort of contact with will actually support us through this entire process, even if it takes years.  Being reminded that printing, signing and sending in a letter is too much shatters my delusion and i'm not ready for that either.  It may be months or even years, but for right now, I'm going to focus on getting ready for 1000 Kisses all over sweet little Maddie.

Baby Penelope

Praying for Baby Penelope and her family today. Penelope lost her fight with CDH this morning.

About the repair surgery

I found this on the CHERUBS website. Its the American Pediatric Surgical Association's description of what will happen to Maddie immediately after birth and leading up to her repair surgery. I just copied the text over, but if you want to see the diagrams, click here:
http://www.cdhsupport.org/apsacdh.php




Before Surgery

All newborns with CDH require surgery; however, the timing of the operation may be different for different babies. In the past, people thought that the babies needed an operation immediately, but it now looks like that is not necessary.

The operation may make the lungs worse because it can put The operation may make the lungs worse because it can put pressure on the good lung. This is usually a problem for just a short time. Before surgery, the baby will usually have a tube going into the stomach and catheters in an artery and vein. The infant will be on a mechanical ventilator and most hospitals will try to keep the amount of pressure on the lungs from the ventilator as low as possible. This is to avoid injuring the very small lungs.

Before surgery, the baby will have a tube in the stomach to keep air out of the intestines and to keep the intestines from pressing on the lungs. The amount of oxygen in the baby’s blood will be watched constantly, usually with a device (pulse oximeter) on the hand or foot. The baby may need medicines to keep the blood pressure normal. In some hospitals, the baby may have a different ventilator that works very fast to breathe for the infant (a high frequency ventilator).

If the baby does not keep the blood oxygen level high enough with these devices, heart lung bypass (ECMO) may be used for several days to weeks. This can only be done in very specialized centers and the infant may be transferred to a center that does ECMO.

The baby will usually have surgery after the situation is stable. It may be days or weeks before an operation is done. If the baby is on ECMO, the infant may have the surgery while on the ECMO machine. The operation may make the lungs worse initially. This is because the intestines are put back into the abdomen and cause pressure on the lungs from below.


Surgical Technique

The CDH is usually fixed by making an incision in the abdomen just below the rib cage. Sometimes, a separate incision in the chest is needed, but if needed, it is usually in babies with a hernia on the right side. The first step is to move the intestines into the abdomen (Figure 4).

After this is done, the edges of the diaphragm are found. If they can be sewn together, they will be (Figures 5, 6, 7). Sometimes, the hole is too large. If this is the case, an artificial patch (such as Gore-Tex) may be used to close the hole (Figure 8 and 9). If, after fixing the hole, there is not enough room in the abdomen for the intestines, another patch may be placed on the abdomen to hold the intestines until the swelling gets better.

The best time for the operation is still debated, but currently most surgeons wait until the baby does not need a lot of help from the ventilator. As mentioned, this can sometimes take days or weeks.