The Rough Road

Psalm 56:3-4,8,11 "When I am afraid, I will trust in you.  In God, whose word I praise, in God I trust; I will not be afraid.  What can mortal man do to me?  Record my lament; list my tears on your scroll —are they not in your record? in God I trust; I will not be afraid. What can man do to me?"

I'm going to skip over updates 9 and 10 because in those days we didn't really find out anything new.  Jeep continued to do fairly well and his prognosis was much of the same... he's growing, he's fighting, he should do well.  We visited the neonatal unit at UNC Chapel Hill and those doctors told us the same thing.  Things look positive and we think your baby will be well, but will need some time in the NICU.  If you'd like to look at those updates in their entirety you can view them here and here.  

All the scary stuff started to happen around 31 weeks gestation.  Our baby had developed the dreaded Hydrops.  Why "dreaded"?  Well, according to the research, 95% of babies with Hydrops do not survive.  It was the one word I didn't want to hear.  This did not mean that God's plan had changed.  It did mean that our plans, hopes and dreams were on the line.  My heart started to waver.  I vividly remember sitting at the kitchen table and telling my sweet husband that I could not survive the death of my child.  He is a wise man.  He told me, "Of course you can't.  Not today.  But, should that day arrive, that is when God will give you all you need to suffer through it.  God doesn't give us all we need for our whole lives today, He gives us what we need when we need it."  Those words were like a balm to my soul.  He spoke the very words of God straight to my soul and I will never forget it or let go of it.  So, here is my encouragement to you....  if you are sitting behind your computer screen saying, "I could never survive what she has survived" or "I can't get through the days ahead," remember that God is a God who gives us just what we need when we need it therefore we don't have to worry.  

Matthew 6:34. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. 

Our prayers also started to change around this time...they changed from "Please o Lord heal my baby" to  "Please Lord equip me to glorify you on the road you will have me travel.  Your will be done." That isn't an easy prayer when the stakes are so high, but what else can you do... you can't do it alone.  

Update Number Eleven

Thursday: Carrie and I went to the hospital to get another ultrasound done. The doctors found that Jeep has now developed ascites, which means that the dreaded fetal hydrops has arrived. Although Jeep does not have full-blown hydrops (pleural effusion, ascites, skin edema andpericardial effusion), this new development is definitely scary. Babies born with full-blown hydrops have a negligible chance of survival. The doctors sent us to UNC Women's Hospital immediately.

Friday: At UNC Women's Hospital, Carrie and Jeep endured a procedure to insert a drainage tube in Jeep's chest wall, which will allow the lymphatic fluid buildup in his pleural cavity to drain continually. (called a fetal thoracoamniotic shunt). The procedure failed.

Before I say anything else, let me say that our doctors are very skilled and the failure of this procedure is in no way their fault; we have 100% confidence in and appreciation of their knowledge, wisdom, and care for Carrie and Jeep.

A shunt is a tiny piece of sterile, inert tubing which has a "pig's tail" on each end. These two pig's tails keep the shunt from slipping in or out of the chest wall (supposedly), while still allowing the fluid to drain. Although they are very problematic (babies tend to pull them out or they get dislodged from fetal movement, and they also can get clogged and cease working), the shunt placement was our best option. The shunt in now fully inside Jeep's chest. He's so active that when the doctors were placing the shunt, he backed up against the uterine wall and did not allow any room for the doctors to place the outer part of the shunt. Since the shunt was unable to be placed, they drained some of the fluid off the lung to relieve pressure. Jeep will be spending some time in the NICU after being delivered by cesarean section and some corrective surgery of some sort will be performed. The shunt will be removed at that time. It poses no threat to his health.

Saturday, Sunday: Carrie and Jeep were monitored for heart rates, contractions, and movement. We looked at Jeep on ultrasound to see if any fluid reaccumulation had occurred (it had, but only slightly), or if the ascites had been resolved with the removal of fluid (it had not, though it had decreased). Carrie was discharged from the hospital Sunday morning since there was no major change in Jeep's condition.

The Plan For Now: We go back to monitor Jeep on Tuesday morning with ultrasound. We will most likely have this baby delivered within the week. We cannot afford to let him stay in there too long with accumulating fluid and risk him getting skin edema or pericardial effusion. His chances of survival at this point are about 65%; we do not want to decrease that any more. He is 31 weeks old (32 on Thursday), and weighs in around 4.5 lbs. We are not sure how long Jeep will be in the NICU after birth, but he will need lots of prayer through this intensely difficult time. We believe he is a very strong boy (his heart rate remained strong though the entire weekend); we pray he lives a very long and fulfilling life.