Thursday, April 30, 2009

Another First

Well since I'm journaling so that I can remember this incredible journey God took us on several years from now, I decided I should jot down another 1st we experienced with this 4th child. Yesterday evening I had 8 contractions in about 50 minutes. Gave me a little bit of a scare. I had had more contractions throughout the day than I usually do (which is usually quite a few), and a couple that even made my low back ache (I've only had 1 in a day a handful of times up to this point), so when I hit that 6th one in less than an hour I had my midwife paged. By the time she called I had hit #8. Thankfully the "cure" was mostly pleasant. Besides having to drink basically a day's worth of water before I went to bed, which in turn made the rest of the evening busy with trips to the bathroom - joy - I was ordered to relax in a hot bath! It took about an hour for the contractions to really slow down and subside, but they were much easier to tolerate while relaxing in a tub full of hot water and bubbles! And, no, they don't normally hurt. Just that somewhat irritating tightening or mild discomfort. Today I've had about the usual amount of contractions, but I'm exhausted and not feeling that great. Makes me wonder what "drama" awaits in the next 5-8 weeks before we finally meet Judah!

Tuesday, April 28, 2009

The Best Days

Jared and I had a good talk this morning. I cried; it had been awhile. I'm still scared and wishing that this weren't about my baby. But I was reminded of something that my dear friend would tell me. She would say that the days that are the hardest - the ones that are scary and emotional, when God seems silent or distant, when I doubt or question, when I start to feel desperate - are really the best. It's in those days that God reveals our need for Him more clearly. We come face to face with our weakness and inability to cope with anything apart from Him, and we become even more desperate for Him. And it's days like these that make the days we do feel His presence and He allows us to experience a deeper intimacy with Him so much more beautiful and powerful! This still really stinks. Knowing this doesn't magically bring on the victory or make the struggle any less real. But it does give me hope. God is still right here with me; He hasn't moved. He's allowing these days to give me the opportunity to trust Him, seek Him, and desire Him more fully than I have been. Tears and all.

Monday, April 27, 2009

My Bubble Burst

I think I've been living in some kind of bubble. Maybe that's not right, but these last several weeks I've been able to really enjoy Judah and set aside a lot of the uncertainties, hurts, and fears that have been so present in my daily life. I know that God allowed that and I've thoroughly enjoyed the rest that enjoyment brought! I'm just not really sure what happened. Reality seems to be crashing in on me at an alarming rate...or maybe not so much reality in general, but the reality of what's coming. It's the reality of living with a little boy with special needs. I don't need to know the specifics of those special needs to know that life will not be easy. I guess it's been settling into my brain since my last visits with Dr. Bonebrake and Dr. Puccioni. Even if everything with Judah turns out to be best-case scenario, life will still be extra busy and there will still be pain, uncertainty, and fear. Of course it would be great if Judah were born with his brain in stable condition with no need for immediate treatment; but we're still facing MRIs, lots of doctor appointments, and the fear and uncertainty of when he would make a turn for the worse and need a procedure. His cleft lip is a big deal and will need surgery (or surgeries); and then, of course, there's recovery and everything that involves. And when will we have to deal with his fingers? Sooner? Later? That's another procedure. The genetics specialist will be doing tests and blood work. What else will that include? I feel so bad for my tiny, helpless, perfect baby boy. And there's nothing I can do to change the fact that he will start life with such hurts. My midwife told me today that if I go into labor anytime after 34 weeks they won't stop it. It would be better for him at that point to be out, rather than in. I'm not so sure. I'd keep him in there for the full 42 weeks if they'd let me. Anything to give him some kind of help! O.k., so up to this point I feel like God has helped me to cope with and handle all of this with grace and confidence. I know He has! Today I just kinda feel like He's taken a step back. I'm not so easily feeling His presence. I know He hasn't left me alone. As a matter of fact, He's put 2 other mom bloggers into my life who have gone through cleft lip "journeys" just a few months ahead of me. And the little boy even has a rare syndrome. It's a beautiful thing to be able to share things like this with other moms who know...still, I don't like feeling overwhelmed, inadequate, scared, sad. I don't like just knowing the truths of Christ, I want to feel them, too. I want to feel God beside me, assuring me that everything really will be o.k. and that this really is the best thing for Judah and our family...and we really will be so much better, stronger, and know more joy because of anything and everything that Judah brings with him. So that's the problem: all the "right" feelings are missing and all the "wrong" feelings are definitely present. Lord, I'm gonna start getting desperate here pretty quick. I can't do a second of this without You! Help...

Friday, April 24, 2009

Too Much Information...

I've never been so weighed down with information! Too much! And it's only a fraction of what's available to me. However, I've decided to live by the mantra "Grace in Ignorance", so to speak. I don't need to know everything, or every possibility. Let's just function at the "need to know" level. That said, on Tuesday we met with Judah's new pediatric neurosurgeon Dr. Puccioni, and then saw Dr. Bonebrake. It was good to meet with Dr. P., and actually encouraging. Technically, Judah has Hydrocephalus - dilation of the ventricles due to excess fluid - which they believe is being caused by Aqueductal Stenosis - the absence of the little hole in the brain to allow fluid to drain out of the brain. Dr. P. believes the presumed diagnosis of A.S. to be "reasonable", and also said that is the easiest cause of Hydrocephalus to treat. And speaking of treatment... he also said that a lot of kids born with this disease (A.S.) don't require immediate treatment - YAY! If Judah remains stable until birth, (which the ultrasound with Dr. B. showed is still the case) and after, Dr. P. will just monitor him on a regular basis, starting with exams every couple of weeks, and eventually working our way to once a year. Of course, that also includes an MRI on my tiny boy after birth. Sheesh. But that was the encouraging news. And that's obviously what we're praying for - that Judah's ventricles will remain stable, with no sudden increases of fluid. Should a sudden increase occur between now and my next ultrasound on the 11th, then Judah will most likely be delivered at 35 weeks and have a shunt put in right away. If he's o.k. until birth, but then has an increase after delivery, the shunt will probably be necessary then. I never knew exactly what a shunt was, just something they inserted into the brain to drain the fluid. It's much worse. It's a small tube inserted into the brain and then run all the way down to the abdomen where the fluid drains...and it's all under the skin. Then, the shunt will malfunction at some point - they always do, says Dr. P. - and you just hope that it doesn't happen until close to 1 yr. or after so Dr. P. can do a surgical procedure (an EVT) to create a hole in the brain for the fluid to drain on its own. I'm choosing not to dwell on the shunt possibility at this point because it scares me and makes me want to cry for Judah. The shunt is a necessary evil, but we know that Dr. P. will do his best to avoid it, and only insert one if absolutely necessary!!! I don't know what God's plan is here. I don't know what will happen. I'm still enjoying Judah every day - growing rounder by the minute it seems - and really just trying to keep my focus on Christ. But it's hard. It's tempting to start looking ahead to the next few weeks and start worrying about and fearing what might be. This is my precious, beautiful little boy, and he has such a long road ahead of him...and he hasn't even started living life yet! He's starting as an underdog! I guess this is the part where I cling to the truths that God loves Judah more than I do; He's writing Judah's beautiful story, not me; He is in control and will not abandon us, but will walk with us and hold us up every step of the way; His plan for Judah is perfect, whatever it includes; and God will do what He knows is best to draw Judah to Himself into a deep, intimate relationship with Him, because He loves and desires Judah passionately. Of course I can say all these things for myself, too. Still, I find myself wishing at the moment that this was someone else's journey. I would never trade Judah for anything, but my flesh wants to bypass all of this heartache and take the easy road. The one that doesn't involve doctor appts. for cleft lip, dilated ventricles, extra fingers, and possible syndromes. Now that I think about it, though, what good is the easy road? It leads to comfort, self-sufficiency, independence, and a pleasant life. I know, that sounds good. But the life that God has chosen for me is one on a road with lots of twists and turns, ditches and potholes. And why would I choose to follow Him on this road? Because it leads to discomfort, dependence, unpleasantness, and the awareness of my total need for Christ. It also just happens to lead to richer blessings, deeper intimacy with Christ, a fuller more meaningful life, and the great appeal of Heaven waiting for me. And that is good.

"A pleasant life is not water for my soul; whatever comes from God - whoever God is - this is the only true water. And it is enough." -Larry Crabb

"Oh! His grace and goodness toward us is so immeasurably great, that without great assaults and trials it cannot be understood." -Martin Luther

"The happiness He provides now is the strange happiness of longing for what we were designed to experience but must wait to fully enjoy. It's the happiness of serving a God we trust enough to let us cry today, knowing He has promised to wipe our eyes tomorrow." -Larry Crabb

"When a train goes through a tunnel and it gets dark, you don't throw away your ticket and jump off. You sit still and trust the engineer." -Corrie Ten Boom

"We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be." -C.S. Lewis

"We cannot count on God to arrange what happens in our lives in ways that will make us feel good. We can count on God to patiently remove all the obstacles to our enjoyment of Him." -Larry Crabb

Monday, April 20, 2009

Easter Opportunity

Jared and I were given a pretty amazing opportunity on Easter morning. The theme for this Easter season at our church was God's unbreakable, unshakable truth. They wanted to interview someone who has experienced God's truths in this way recently. My pastor's wife has been reading my blog, so she thought that we, as a couple, were pretty good candidates for said interview! Well, I agreed. God has definitely been our unshakable rock; looking back at this blog is evidence of that. We jumped at the chance to tell over 1000 people how amazing He is and what He's done for us and in us. We were both pretty nervous. I didn't know if I'd break down in the middle of "our story", or if we'd be able to clearly communicate the truths of who God is...and I was so nervous that we'd come across as looking all spiritual-giantish or something. Which is sooo far from the truth! Anyway, God went before us, gave us the words, got us through it, and everything went really well. It was a great time of sharing , knowing that there are so many others in a Body that size that are hurting and questioning God. I'm so thankful for the opportunity we were given to share with those people that God's faithfulness and goodness are very real, and He does love us no matter what. And now there are even more people praying for us and for Judah.

This was the email we sent to our senior & worship pastor to let them know what we were planning on saying.

Hey Steve & Rob! Jared & I are humbled to have been asked to share our experience, but we're also excited because we love telling people about what God has done in our lives! This is a tremendous opportunity to reach lost, searching, and hurting people with the truth of who Christ is and how amazingly sufficient He is no matter what we face in our lives.
To go off the questions you gave us, Rob, in a nutshell...Jared & I have been married for almost 9 yrs. and we have 3 children with our 4th on his way. We were both raised in godly homes and have chosen to walk with the Lord for most of our lives. God has led us through some very difficult and painful circumstances since we've been married; but He's always been faithful and He's always made us stronger in our faith and more sure of His goodness. 7 mo. ago we were shocked to discover that we were going to have another baby. That was not a part of our plan! We had to go back to the basics of believing that God's plan is perfect, He loves us completely, and He knows what is best for us. I struggled a great deal emotionally with this change in plans and expectations. Then, at my 20 week ultrasound, we received news that completely rocked our world. Our little boy had several symptoms of Downs Syndrome or what could be some other chromosome defect. I was referred to a specialist right away, who determined that an amniocentesis was necessary to rule out a major defect like Trisomy 18; in which case our son would not survive life outside the womb. We had to wait 30 hrs. to get the initial results from the amnio, telling us if our son would live or not. We've never experienced that kind of pain, grief, and uncertainty! BUT GOD, in the midst of that horrible grief, met us with such love and grace. God gave me, as the mother of this child, the grace to give him back to the Lord, recognizing that he is a gift from the Lord and is not really mine. He gave me the grace to love my other 3 while I was hurting so much over this 1. He gave me peace and assurance that regardless of the outcome He would not abandon me, but would sustain me and give me the grace and strength I needed to meet each new day. All the tests came back normal and we rejoiced and praised God. And 2 weeks later the final chromosome count was normal as well. However, our son Judah has excess fluid in his brain that will need to be drained after birth, as well as several other symptoms that lead our doctors to believe that he has some kind of syndrome and will have special needs. It's amazing, though, how God has been so present with us in every day, through every bit of bad or scary news, and through all the uncertainties! He has enabled us to say, "for Your glory, Lord"! His faithfulness and goodness are real, and we know that His perfect plan for us has always included this special little boy!We believe that no matter what the future holds for Judah and our family that God is good, faithful, loving, He will sustain us, and He will give us the grace to meet any and every challenge we face. He will not abandon us. He will continue to use difficult and painful circumstances to draw us into deeper intimacy with Him and make us more like Christ. But He will also bless us and enrich our lives more than we could have imagined through the life of our son Judah. It's hard for me to gauge what this will sound like out loud. And it won't come out exactly like this on Sun. morning, either. Our prayer the last couple days has been that God would allow only what will bring Him glory and what He wants to be communicated to come out of our mouths. We don't want this to be about us. We don't want anyone thinking that we have such a strong faith and we must be "so spiritual", because the way we have been able to handle this is so beyond us! This is Christ in us. This is Christ at work. Let us know if there's a different direction you'd like to go, if I said something confusing, or any changes you think of that would make us better able to communicate how phenomenal God really is.

Transition to Joy

I've gone through a lot of transitions since September. Not one of them very easy or pleasant. But over the last several weeks (I don't really know when it happened) I've gone through another one. It's my transition to joy. In the beginning I thought I'd never be able to enjoy this pregnancy. I just couldn't seem to get past all the emotional turmoil and adjustments that came with this surprise baby. Then I thought I'd really never be able to truly enjoy this pregnancy, because all of a sudden we were grieving the loss of a "normal", healthy child. But sometime in the last several weeks God decided to quietly step in and usher me into this season of joy with Judah. I never saw it coming. It just kind of occurred to me one day. I was genuinely enjoying being pregnant with Judah! I was excited to feel him move so much. I was thrilled that he was getting bigger. I was loving all the attention Judah and my belly were getting from the kids. I was delighting over him with my kids when they got a chance to feel him kick or squirm. I was grabbing Jared's hand and putting it on my belly whenever I got the chance just so I could share this experience with him, and give him the opportunity to enjoy Judah with me. And here's the really amazing part: I realized that I was spending very little time thinking about the future. I was caught up in the moments I had with Judah right then...just living in that day with him. God has given me a tremendous gift! The gift of thoroughly and genuinely enjoying Judah just the way he is today!! He's safer than he'll ever be. In a couple months we'll have a lot of new things to face and work through; but today there's just Judah. God is so good. You know what's coming...this is all about Him. He's given me this joy and this gift and opportunity. He's given me this sense of peace. And He's given me confidence in Him so that I can let go of the future. Tomorrow we meet with the neurosurgeon. I'm not too sure what to expect. And I don't know if that appointment will be the beginning of a new transition...depends on the information we get I guess. Maybe this joy won't come so easily after tomorrow. It's kinda hard to imagine that, though. I love being pregnant with Judah. He's special. Nothing that doctor tells me tomorrow will change that!

Wednesday, April 1, 2009

The Presumed Diagnosis

I had another appointment with Dr. Bonebrake on Monday. 3 weeks after my MRI. I had decided to wait to talk to Dr. B. about any results because I wasn't ready for more bad news. Yes, the possibility existed that there would be no bad news, but how could I know that for sure? It was worth waiting for whatever the news might be, because it offered me a break of sorts. I could put off this next appt. in my mind and just enjoy Judah the way he was, without adding anything scary or sad or new to the situation. There was grace in not knowing; (you're right, Amy). However, I experienced a lot of apprehension and anxiety the day before my appt. All of a sudden I had to face the possibilities that something else even scarier could be happening in my baby's brain; or, something I really felt incapable of dealing with, that Judah could have a cleft palate. I was terrified that after Monday I would also be grieving the loss of a nursing relationship with Judah, and everything that means to me...and him. Well, thank You, Jesus, for women who pray...4 to be know who you are! It's hard to describe what happened when Monday rolled around. First, I actually didn't lose any sleep on Sunday night. But then on Monday morning, all the way up to and through my appt...well, it's not like God's peace was overwhelmingly present, but that all of my anxiety was absent! I had a couple butterflies here and there, but the anxiety and fear was gone. I couldn't even muster any up when I sat in the room waiting for Dr. B. to bring in the MRI results. It was...weird. And beautiful. God, Jesus, was with me...right beside me in that room.
So, after the ultrasound we sat down together to discuss what the MRI found. The first thing he said was that the MRI was not able to see a cleft palate. It could depend on how Judah was laying, so he can't say 100% that he doesn't have a cleft, but we're now going on the assumption that he doesn't! I almost lost it right then! Relief is just not a strong enough word. He then went on to explain that the MRI confirmed everything he's been seeing on the ultrasounds, with nothing new to add. So, I actually got GOOD NEWS!!! And I got a presumed diagnosis: Aqueductal Stenosis. Out of the 4 ventricles in Judah's brain, 3 are dilated. The presumption is that their is a blockage of some kind in the 4th, so the other 3 are not able to drain properly. His little brain is kind of like a backed up sink. The next step for us on this journey is a consult with Dr. Puccioni, a pediatric neurosurgeon, to talk about what this means, or might mean, for Judah after delivery. Because of Judah's numerous symptoms, Dr. B. is still pretty convinced that he has a syndrome, so there will be blood work and exams/consults with the Genetics Specialist after birth, Dr. Puccioni again, and who knows what else. But, let's just take this one thing at a time, shall we?
There were 2 cool moments with Dr. B. One of the first things he asked me when he came into the room was if I still had my "pipeline" going up. I had no idea what he was talking about! He was like, "Ya know, the prayers around the world thing". I couldn't believe he remembered that! I said we absolutely had people praying for us and him all the time! We joke around a lot, so he started joking about how he'd just like prayer in general. Well, I'm taking him seriously! The other cool thing is an evidence of Christ working in me...and I totally didn't expect this. At the end of our discussion about the results, after all the information he had given me, he looked at me and told me that he knows it's a lot to deal with, there are a lot of questions, it's a lot to handle; but then he told me that I seem to be handling all of this really well. (I've been praying that God would give me courage to take the opportunities He opens up for me when I'm at my appts, etc., and He gave it to me.) I told Dr. B. that it's not me. I told him that it's the Lord and He sustains me through all of this. He said it's me, too, because I'm allowing God to work through me...and the conversation kinda just moved in another direction after that. I don't know where he's at spiritually, but I believe that he has some kind of religious background or something. Anyway, that's about it. I'm still processing everything, but not allowing myself to dwell on the long term implications or possibilities of all of this for Judah...or us. Today I'm choosing to dwell on God's goodness and the gift He gave me yesterday; that I can have some confidence that I will be able to nurse Judah and reach the goal of having a normal nursing relationship with him somewhere down the road. And today I will dwell on the fact that God is with me in every moment. And I will rejoice in the fact that Judah is. And we get the unbelievable privilege of calling him ours!

I almost forgot! We were talking about the possibility that the extra fluid in Judah's brain would resolve itself, and that he would have no lasting impact or syndrome. Dr. B. said that medically, he doesnt' think that's a possibility; but with the "pipeline" I have going, if any kid has a chance at that, it's this one! I think that Dr. Bonebrake has no idea how right he is! My God can do ANYTHING!!! Even give us the grace to praise Him, thank Him, and glorify Him should He decide not to heal Judah!