His Touch

I remember the day at our 20 week ultrasound when they found that our baby had hydronephrosis. I didn’t even know what hydro was at that point. I just knew our baby was sick. Since then every appointment has brought with it one word: BIGGER. The kidney kept getting bigger – getting so severe that doctors couldn’t hide their reactions, that we were told this would never heal on its own, that he would have to have surgery earlier than they normally do surgery on newborn babies.

Through all of this we have been surrounded by our prayer warriors, and their prayer warriors, and their prayer warriors. The most recent of which was last night when our graduating seniors laid hands on me and prayed for healing. What a beautiful parting gift for them to give us.

I myself tried praying in a new way. Rather than praying the usual”God I really want you to heal his kidney, but I understand that you don’t always do that…”

I prayed this instead “Jesus, you heal with a touch. All the bleeding woman wanted was to simply touch your robe. The blind men just wanted to have you touch their eyes. And there was something about your touch that healed them. And more. Please touch my son’s kidney. That’s all he needs. Simply touch that blockage in the ureter. And he will be healed. I know it”.

I say this not to boast about how I pray, but to boast about the work that the Lord does in my heart.

Today we had our last ultrasound with the high risk ob. And somewhere in me I knew, I just knew, that we were going to see a kidney that was completely healed.

Not with severe hydronephrosis.

Not with moderate hydronephrosis.

Not with mild hydronephrosis.

No hydronephrosis.

And that’s exactly what we got!

The sonographer had to keep double checking her chart to make sure that it was in fact the left kidney that had been damaged. She measured both the right and the left three times. Both kidneys are completely normal.

No hdyronephrosis.

I said to the doctor “I was told a case this severe doesn’t correct itself”.

And she said with an amazed look on her face “It doesn’t”

I want to thank you if you prayed and also invite you to rejoice with us. You got to be witness to, and part of, a miracle. Rejoice in knowing the one true God who hears our prayers, who heals with a touch.

Good News?

We had yet another ultrasound this morning and our little baby seems to be as cute as ever.

I have really come to dread the ultrasounds, mostly because we have gotten worse news at each one we have had since our 20 week anatomy scan.

This morning however, it was a little different. Worst case scenario going into these ultrasounds is always a) Left Kidney has gotten bigger b) Right Kidney is also dilated c) other problems arise reflecting chromosomal problems.

Today I saw a perfectly-sized right kidney, a healthy brain and heart and bladder.

And…. a left kidney that didn’t get any bigger in the last month!

In fact, the sonographer says it was measuring slightly smaller (not really enough to make it significant or indicate the problem is correcting itself, but I”ll take it!).

Finally, the doctor saw lots of healthy, functioning tissue around the dilated kidney.

I don’t think I was in a place this morning to hear worse news – so even though this wasn’t earth shattering, I feel encouraged and blessed. Thanks to all our friends and family who are praying for this little guy!

His Hands

We finally met with the pediatric urologist, and Jon and I really liked him. He was very tender, patient and intelligent – all good things. I have been doing a lot of my own research so I didn’t learn a ton of new information today, but reading about something on the internet is very different than hearing it from a doctor who will actually be performing these things. Here are the details of what we walked away with:

1) There are typically two main causes of kidney dilation: reflux or an obstruction. Because of the severity of this case of hydronephrosis he seems pretty positive that it is an obstruction and not reflux.

2) Here what my son’s first month of life will be like (besides lots of eating, sleeping, pooping and cuddling of course):

Day 1: start on antibiotics. This will be to help fight the urinary tract/kidney infections that are likely to occur given his condition.

Day 3 – Ultrasound to measure kidney size after birth, get a good look at his tissue, etc..

Day 3 – VCUG. This stands for Voiding Cystourethrogram. Basically a fluid will be inserted through his urethra and through x-ray technology they will check to see if the fluid shoots back up to the kidney. This test is done to determine if reflux is the cause, so although our doctor doesn’t think it is, he wants to be able to rule it out. This seems to be a very uncomfortable procedure that lasts a couple of hours. I’m glad he will be too young to remember it.

1 Month: Renal scan (mag 3). During this test a low-level radioactive material is inserted through an IV and then the doctors wait and see how his kidneys process it. This will determine how much Kidney function he has left at this point and also help determine more info. about the obstruction (which is most likely right where the ureter meets the kidney). This is about a two hour procedure during which he may have to be mildly sedated.

1 month: Surgery. If little boy has less than 15% kidney function (which is determined by the Mag 3) on the left side he will remove the kidney. If he has greater than 15% function, he will do surgery to correct the obstruction. This surgery of correcting the obstruction has a high success rate (90-95% success rate). He said a month is the very earliest he would prefer to do surgery, however given the severity of what he is seeing now he thinks that is the best idea.

How I’m feeling about all this: It feels good to meet the man who will be treating our son, to have an idea about a time line of events. It feels awful to know that our son, at the fragile age of one month, will be put under general anesthesia and with the way things are looking now, most likely say good-bye to a major organ.

I kept looking at the doctor’s hands, realizing that these were the hands that were going to be caring for our baby’s urological health, the hands that would eventually be cutting into his tiny body, removing his tiny kidney or re-attaching his tiny ureter.

He wore a wedding ring, and his hands seemed calm and steady. I feel good that this appointment is done with and that we are on the road to treatment with what appears to be a competent pediatric urologist, however I can’t trust him fully. His hands are human.

The only Hands I can really trust are our Fathers. I pray that His Hands will continue to be upon our boy, and that Dr. Ashley’s hands will really be God’s hands as he deals tenderly with our newborn.

A visual aid

I think ultrasounds are fascinating and even though I now sort of dread them I am intrigued to see all the organs and everything.

Here is a picture of our cutie’s abdomen to give you a better idea. The two large ‘blobs’ toward the top are actually his one dilated kidney. Like I said in my last post it seems there are two ‘compartments’ (for lack of a medical word) divided by tissue.

Beneath these you can see several smaller black spots. One of those, the one with the two little cross hairs on either end for measurement, is the healthy kidney.

Pause

There are events in my life that just make me want to hit the pause button, because they effect me in a way that just make it too difficult to carry on with normal life.

We had our follow-up with the perinatologist this morning to look at baby boy’s kidney – we had been praying for the best case scenario – that his kidney will have drained properly and gone down in size. We knew that was a possibility in a lot of hydronephrosis cases and had family and church praying for that outcome.

Unfortunately that’s not what we got. His dear little kidney has in fact gotten bigger. So big that it seems to have created a whole new compartment to store all this fluid.

“Oooh – that’s definitely severe” were the doctor’s words, actually.

She also used the words ‘impressive’ and “one of the bigger ones I’ve seen” and “there is no hope of that correcting on it’s own, not a case that severe”.

Gee, thanks doctor.

There were a couple of other things on my wishlist that I wanted to come away with today, that I did get, even if I didn’t get a normal functioning left kidney.

Those are:

*A right kidney that is still functioning and at a normal size. Thank you God. I think I am in love with his right kidney.

*Assurance that every other anatomical aspect is still developing and functioning normally (heart, brain, bladder, stomach, etc…)

*A referral to see a pediatric urologist. This will hopefully happen in the next few weeks. I wish I could see him tomorrow as the perinatologist has told us everything she can about what this means for baby’s future outside the womb, but alas more waiting is in store for us.

Jon and I both left the appointment feeling disheartened with resurrected fears of the size of his kidney affecting other organs or even bursting. And just that awful feeling that everything is not perfect with our son.

We have been told by doctors that of all the things that could possibly go wrong, this is the one you would choose if you had to. You only need one kidney.

But I don’t care and those words are not encouraging.

I don’t want this for my son.

So while those statements are true and we are still grateful we are not dealing with anything that appears to be life-threatening or fatal, it doesn’t feel like that today.

Today I wish I could hit the pause button, as I don’t feel like teaching or meeting with students or cooking dinner.

Pause life to take some time to process and cry and come to terms, once again, that my ways are not God’s ways.

See, I told you…



that we had one adorable little baby!

I remember thinking that 3d ultrasounds were actually kind of creepy (we never had one with Evie) but now that it is my own I think it is totally precious!

Wanting to suck fingers or toes (I can’t tell which…)

Here we see his love for his own foot. He is hugging his ankle bone!

Such neat technology! He is about the length of a carrot and pretty darn skinny at 21 weeks but I still think he is perfect!

Diagnosis: One Huge Kidney

I felt strong. I felt like praising God. I felt faithful in His faithfulness. I felt like saying ‘no matter what happens, God is good. All the time’.

And this terrified me.

Going into our visit with the perinatologist this afternoon I had a knot in my stomach and for all of the normal reasons but what really pushed me over the edge was the fact that I was feeling strength and faith on a whole new level. My only explanation for this was that God was really preparing my heart for the worst. There must be some really bad news I was about to receive if God was bolstering me with so much support. So much peace.

Thankfully, we didn’t have to wait very long before being called back for our level II ultrasound during which our sonographer (who reminded me so much of Erin Brankel Andrelli that I was immediately comforted) and soon enough the gel was on my belly and she was prodding around with the ultrasound thingy to look at our beautiful babe.

The brain, heart, face, spine umbilical cord still looked perfect and healthy.

And adorable.

But as she moved the wand to view his abdomen my fear was confirmed. There was the giant black circle. My baby’s kidney. Still dilated. Still significantly larger than his other kidney. I don’t know anything about anything but even I could spot it right away and tell you it wasn’t normal.

She said the doctor would be in with us to talk about specifics and so while we were waiting she just took more pictures of our precious boy. He is pretty handsome, by the way.

The doctor was a lovely, strait forward, kind woman. She confirmed that everything, including little boy’s other kidney looked beautiful at this point.

But.

That darn left Kidney just wasn’t draining properly and is officially diagnosed with Hydronephrosis. Here are the main points that I came away with from our latest appointment:

1) It is not cystic. I”m relieved by this.

2) The chances are not super high that we would have a baby with downs syndrome due to everything else being healthy and my age, but since kidney problems are a marker our chances go up a bit. We denied an amnio at this point which could confirm or deny for us because we wouldn’t terminate the pregnancy if our littlest one had downs syndrome and just didn’t feel the need to know at this point given the risk associated with an amnio. We can do it later if we want or just wait and see if we are surprised and blessed with a child with Downs.

3) The Kidney is not damaged.

4) Yet. Although the perinatologist will let a pediatric urologist make that call down the road, she said she thinks that when our baby is born the kidney will be damaged and non-functioning. I think this means surgery to remove the damaged kidney.

5) People live with one kidney all the time. No biggie. Hah! There is no such thing as “no biggie” when you are a mom. But seriously, in the dark, sad world of organ failure, it seems like one kidney failing is cause for a party.

6) Nothing is guaranteed. We will continue to be monitored regularly and receive non stress tests starting at 32 weeks and keep an eye out for other markers of chromosomal problems that could still develop and cause heart, brain problems as well as other issues associated with kidney problems such as low amniotic fluid.

7) God is good. All the time.

I feel a mix of emotions at the moment. I am reasonably optimistic that our baby will be fine. He has one beautifully functioning kidney and looks healthy otherwise. People live with one kidney all the time. But I am also saddened. My baby hasn’t even left the safety of my womb yet and already the imperfections of this world are upon him. He will very likely need surgery as a wee bitty one. On top of that is the worry that every parent experiences. The ‘what if’, ‘worst case scenario’ worry that almost makes me sick to my stomach.

Thanks for reading this and praying for our son. And for being informed on a blog instead of by a phone call. All this emotion and medical jargon is exhausting and I am thankful for technology to be able to post it once and not have to repeat the details over and over again.

When I said, “My foot is slipping,”

your unfailing love, LORD, supported me.

When anxiety was great within me,

your consolation brought me joy.

Psalm 94

Oh Boy!

Snakes and Snails and Puppy Dog Tails…

Is what we can expect in May! Here are some highlights of our 20 week ultrasound…

1) We saw the little boy parts right away, he seemed very eager to show ’em off and let us know right away who we were dealing with!

2) He is measuring a week ahead, and if he is anything like Jon was as a baby he is going to be nice and huge.

3) He was facing forward the entire time, so we got to see him yawn, rub his eyes and stare at us (or my belly at least!)

Now here is the difficult part –

Our little boy, our son, has a kidney problem. I knew when another ultrasound technician was brought in to ‘check things out’ that there was something wrong. Our little one’s right kidney is signifcantly larger than the normal range and is filled with fluid, causing the doctor to suspect that it is not draining correctly and filling with urine.

Some implications for this are:

1) possible chromosomal abnormality. They think this is unlikely given how everything else (organs, etc…) are all formed normally and appear healthy.

2) It goes away on its own, fixes itself – pray for this option!

3) post-natal care, surgery to remove a kidney or draining of the kidney to see if it continues to function normally.

We will be in next week hopefully to see a perenatalogist who will continue to monitor Little Boy’s kidneys and hopefully give us a better idea of what is happening and what we are looking at.

We are trying to be hopeful and look at all the good news we got today:

-We are having a son!

-Kidney problems aren’t typically fatal (I know nothing about kidneys or kidney disease or anything, but I don’t think that this is the case). Although the idea of post natal medical care, NICU stays and surgery on our wee little one make me sick to my stomach, it would appear we are not looking at the worst possible diagnosis out there. Although there have been tears today and many fears and questions, I am thankful for hope and for a baby whose heart beat strongly and legs kicked energetically.

Evangeline is going to have a baby brother!