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.

Doubt setting in

Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Nothing had gone as planned... well, nothing had gone as I had planned.  At this point in my pregnancy, I was really starting to doubt that my sweet boy would be okay.  I was starting to doubt that my faithful God would be faithful to ME.  I mean, didn't healing my baby = God's faithfulness to me?  I started to feel like if I didn't get my way God was no longer faithful.  My plan had become more important to me than His plan... His glory.  I needed to have a realignment, but my flesh cried out and I felt very alone.  But, my sweet friends, I was never alone.  God did not for one second take His eyes off me or my boy.  God was with me and when I didn't feel Him, I knew it was because I had turned MY face away from Him.  And when I did that, I lost all access to His power, His comfort, His peace, His joy, His strength.  I had to turn my face back to God to get through this. And to do that, I had to pray, look to His Word, and ask others to pray for me especially when I couldn't find the words to pray for myself.  I can't tell you how many times my friends gathered around my bulging belly, laid hands on me and prayed their hearts out for me, my family, and my little one.  It meant/means the world to me!  Now, let me say, if you don't know my King Jesus, I pray you would seek and find Him this very day because if you are walking a path similar to mine or struggling in a heart wrenching way, you can't have hope, you won't have peace, and you certainly won't have joy apart from Him.  This is an impossible journey without the one who created you and loves you.  

We started to give Jack different names through this process so we could call him something since we had not picked out a name yet... as you will soon see Turbo and Jeep were two of those names... we eventually stuck with Jeep, but bare with me until we get to that point!

Here are excerpts from updates Seven and Eight.  Gestational age was 29 weeks.

Today is Tuesday. As you know, 72 hours ago, Turbo underwent a fetal thoracentesis to remove fluid from his pleural cavity, which we now believe to be lymphatic fluid

Results from today show that approximately two-thirds of the fluid has reaccumulated already, and although this is not surprising (typically pleural effusions, when drained, reaccumulate fluid within 24 hours or so), we were hoping for much less accumulation. The good news is that the amount of amniotic fluid has decreased (increased levels of amniotic fluid can result in preterm labor, more commonly known as premature birth). We have another appointment this Friday for further analysis of the baby's situation, and we will have weekly visits to closely monitor Turbo's development. We pray that there will be no need to drain the fluid again or place a shunt in his pleural cavity.

We are told that the fluid which was drawn from Turbo's pleural cavity is likely lymphatic fluid, which leads us to hope that the cause of the fluid buildup is chylothorax. This is common enough in newborns to not cause great concern, and is the most hopeful prognosis of his condition.

No matter what the cause or result of this fluid buildup, we can be sure that his lung capacity and function upon birth will not change from what it is right now. The fetal lung ceases major development at about 25 weeks of gestation. All we can do now is pray (actually, I think that's all we ever could do, isn't it?).

The name of the day is "Jeep." Here is a haiku to explain today's ultrasound:

Growing effusion,

The child within her suffers;

Jeep is a fighter.

The fluid will likely return to its previous state before long, which will likely result in the necessity of a shunt to be inserted. The amniotic fluid is increasing as well, and though it is still only in the high normal range, we must closely monitor this as well. Jeep seems to be doing well; his heart is strong and he's a fighter. Jeep is also a little larger than average size for his age - not terribly surprising for those of you know about the huge babies in our family. Lord willing, Jeep will survive the pregnancy and delivery, and be a strong, confident little boy. We eagerly await more news from the doctors, as well as the encouragement you all have given us. Thank you so much for standing in prayer with us; our prayer (and belief) is that Jeep will have a great impact on all those who know him - after all, he already is.

Psalm 118:25-29 "You are my God, and I will give you thanks; you are my God, and I will exalt you.  Give thanks to the LORD, for he is good; his love endures forever."

Change of Plans

Isaiah 41:10  "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."

As much as we wanted to continue with our "non invasive" strategy, truly believing that God would heal our baby and that giving our baby time was what he needed, a time had come where we could no longer sit back and do nothing.  The doctors strongly encouraged us to take action and under their guidance and lots and lots of prayer, we decided to try and help our little man with some amazing help from some amazing doctors.  And it wasn't just our prayer, but prayer from a church body who supported us every step of the way and a family that we could not have done this without.  God promises to provide all we need just when we need it (Philippians 4:19 "And my God will supply all your needs according to His riches in glory in Christ Jesus") and He did just that over and over again.  Through our obedience in prayer and seeking God... looking straight to Him, He blessed and blessed and blessed some more.  I know that sounds crazy since we all know what happened in the end.  Our little man would go to be with Jesus on the very day of his birth, but my focus can't just be on the end, it must be on the process as well.  God had something to teach me THROUGH the process not just at the end.  He had to teach me how to depend on Him in a way I never had to before.  He had to teach me how to pray (more on that later).  He had to teach me how to reach out to others.  He had to teach me how to look outside of myself and love others because this wasn't just MY journey.  He had to teach me how to focus and refocus.  He had to teach me how sometimes the plans have to change.  He had to teach and teach and teach, and He so graciously continues to do that even now.

Here is an excerpt from update 6. Gestation age was 28 weeks.

Our last appointment was Friday morning. Our doctor told us that the fluid in the baby's pleural cavity looked like it had grown, and the preliminary measurements that they took indicated that the amount of fluid had doubled in the past two weeks. In addition to that, the amniotic fluid had increased as well, which is an indication that the increased fluid and pressure in his chest had blocked his esophagus (a normal fetus continually swallows and urinates out the amniotic fluid, and increased fluid shows that he is urinating out the fluid but not swallowing it).

Based on this information, and also the poor prognosis with continued non-intervention, we were recommended to proceed with the thoracentesis. Our doctor called UNC Women's Hospital and arranged for Carrie to be admitted that same day. We went directly to the hospital and stayed there overnight. 

The thoracentesis was performed on Saturday morning by our regular doctor and one of her partners - there was a great deal of experience and knowledge in the operating room (4 physicians, 2 anesthesiologists, and 3 nurses). I was able to be there for the procedure - everything went very smoothly and they were able to remove about 75% of the fluid. The baby responded very well, and has been very active since the procedure ended. Carrie is taking it easy right now with slight cramping from the procedure (completely normal and expected); we will return to take another look at the baby on Tuesday to see whether any of the fluid has reaccumulated.

Our prayer is that the fluid will not accumulate at all, or at least not quickly, so that we do not have to intervene any more in the pregnancy. Please continue to pray for our baby through this. Thanks for all your support.

Remembering the Path

Proverbs 3: 5-6 "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight."

My husband and I prayed.  I mean, we REALLY prayed.  I want you to know that.  Each step of this process was about our relationship with our Lord.  We didn't think at any point that this was something we could handle on our own.  I tell you this because I think we sometimes find ourselves in hard circumstances and we start to think it is all about the circumstances and what we do or don't do to help get ourselves out of these circumstances.  Sometimes it isn't about getting out, but getting through.  In our conversations and in our prayers, we truly believed that the less we intervened the better.  Most doctors would have told us we were crazy, and maybe we were (well, I am sure that we are, but that is for totally different reasons!), but we never wavered from that decision.  My heart was at total peace with that.  It seemed the only right thing to do for us. I truly believe that if I were supposed to have handled it differently, then that peace would not have been there... not when I was so  deeply in prayer about these things.  That fact would proved to be something I had to remind myself of over and over again after Jack died.  We start to question all of our decisions once things start to go horribly wrong and we forget about the peace that was in the decision.  Or we start to doubt that peace.  Having our blog helped us remember.  It continues to help me remember when I start to doubt.  God is so good as to give us tools to remember who He is and what He has done.

These are excerpts from updates four and five.  Gestation age was 25/26 weeks.

Updates Four and Five 

The doctor reported to us that the significance of the fluid in our baby's chest is probably not affecting his lung development negatively, but there are signs that his heart is beginning to be affected by the pressure buildup. We are told that he has a slight tricuspid regurgitation. The doctor does not think this is a life-threatening condition in the immediate future. We have a follow-up exam next Friday, at which point she (the doctor) will most likely recommend the thoracentesis be done. We will have that procedure done at the UNC Medical Center so that, in the case that our baby does not respond well to the procedure, he can be delivered via emergency cesarean section and have a good chance of survival. His current gestational age is 25 weeks.

Our ultrasound from this morning revealed that there is no significant change in the baby's health, thus we can continue our nonintervention in the pregnancy (we do not have to get the thoracentesis at this point in time). We will return in two weeks for another exam. So, while we are still wandering in the realm of the unknown, at least we are giving the baby more time to grow and develop in the womb. I see this good news as God's provision for us through your many prayers; please continue to do so on our behalf.