What we’ve been up to!

Well, with all that has been going on, we have been able to remain somewhat normal in our daily routine. Here is a peek at what we’ve been up to in March.

The first full weekend in March, my parents and sister came up a few days early to attend and prepare all the food for Bentley’s and to have fun. I learned how to cook a couple of Vietnamese and Korean dishes. Bentley’s party was a Kung Fu Panda, Asian feast. All of Bentley’s grandparents, aunts, uncle, and cousins came up for the occasion. We were all full and had a great time.
Here is a plate of what we served:

The following Thursday was Bentley’s ultrasound and there followed several doctors’ appointments. In the meantime, there was an afternoon that Danny was able to come home for lunch and wash his very dirty work van and eat some egg rolls (leftover from the party). We have had beautiful weather off and on, so Bentley and I took advantage of the days that we could sneek out and get a walk in or eat outside and play.

Here’s some pictures of some fun times!
Bentley and his fancy hairdo before his doctor appointment! (Daddy’s doing!)

Playing ball

Playing around with Mr. Potato Head parts

Playing outside

Bentley actually picked up some new words in the past few weeks: ball, bubbles, night-night, and gentle. He still loves to say turtle, dog, woof, da-da (he even has a dance he does with it), ma-ma (kinda on the back burner right now), yuck (which sounds more like gyuck). He has really found his voice and makes all different sounds and noises, it’s really fun to hear him humm or sing while he’s playing and crawling. For right now, he isn’t wanting to walk too much. He’s taken a couple steps here and there but not walking.

So, that’s been our life!

Here is Bentley’s party!

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What a fun day…

Today, we found out that we are having a little girl! We are both so excited. The technician was having a bit of a hard time, at first, seeing things because the baby was so wiggly. The doctor was very pleased with our ultrasound and said that we have a very healthy baby girl. She is 11 oz! Her heart and kidneys look great. I’m scheduled back for another ultrsound in 8 weeks to check the progress of the kidneys (just because of what Bentley is going through). They even checked my kidneys and found no cysts or irregularities, though I still have to go the ultrasound specifically for them.

Here is our girl!

We also had a fun time at Falls and Cleveland park. It has been such a beautiful day. Here are some pictures of Bentley on the swing.

So, that was our day!

GI Appointment

The liver is functioning fine and the numbers are good, but there is scar tissue in the liver. He also has portal hypertension, this is what has caused the umbilical vein to reopen and drain the extra blood that is going to the liver. So, basically the liver has found a way to take care of itself and the Dr. does not want to mess with that. As with the kidneys, there is no need for a transplant right now because his hypertension is under control, and since the body is taking care of itself they don’t want to do anything major until they have to.

So, the signs for the hypertension that we are to watch for are swelling/ water retention and vomiting blood.

If his hypertension were to get bad, he could have to have a liver transplant and also his esophagus veins could fill up (like varicose veins) this can be potentially life threatening and would require surgery to clamp or close the veins. Hopefully, we will never get to this point.

We also met with a nutritionist, to get Bentley on a high caloric diet. This is to help him gain weight and grow. After talking with the Dr. and the nutritionist, we were informed to take him off all milk. Goat and Cow milk have similar protein in them and we think that he is sensitive/ allergic to cow’s milk, so they have put us on a Soy Pediatric Drink. The hard thing with this is it isn’t sold anywhere around here, so we have to order it online. This is not a bad thing, just inconvient. We also have to watch to make sure that he doesn’t become allergic to soy. Thankfully, there are still more alternatives.

The GI Dr. wants to get some more blood work done, but wants us to wait to get it done until the Nephrologist decides what testing he wants to do so that we can get it done all at one time. The GI Dr. wants to check his vitamin levels and to find out if he has celiac. Celiac disease can inhibit growth, and food allergies run high in my side of the family. The GI Dr. went to see if she could talk to the Nephrologist during our appointment, but he was in his other office today. So, they will be conferring and figuring out what exactly is going on. Until then, we still don’t have a lot of answers.

We have a follow up appointment with the GI Dr. in three months (6/29), because as of right now, all we can do is monitor him and try to beef him up!

Nephrology Appointment

– All blood work came back looking good
– Urine testing came back normal
– One kidney came back (the important one) fine in the blood work, while the other was high.
– Thyroid came back normal, except the hormone produced was low. They do not feel like this is causing any problems because it has been tested three times and for the most part been fine.
– He showed us the ultrasound and explained the cysts.
– The liver is measuring the correct size.

The kidneys are enlarged to twice the size that they should be. The cysts indicate that there is a problem, but they are not necessarily causing damage/ not needed to be taken care of. They are also not causing him any discomfort or pain.

Bentley has been diagnosed with polycystic kidney disease. We are proceeding with which form of this disease he actually has. It can either be autosomal dominant or autosomal recessive. This disease, in most cases, is hereditary and leads to eventual failure of the kidneys. If Bentley has the dominant polycystic kidney disease the failure usually doesn’t come until his 30-40s, but if he has the recessive form, than it could be at any time. Kidney failure results in having a kidney transplant.

Unfortunately, the nephrologist feels that it is the autosomal recessive polycystic kidney disease because there are no known cases in our family history and because it didn’t show up in my pregnancy ultrasound. Usually, it would have been detected there. Thankfully, I go to a Maternal, Fetal Medicine Office for my ultrasounds and they specialize in problem pregnancies, so I know that nothing was overlooked. Another rarity to Bentley’s case is that it has shown up so late. Only 11% of children with this disease are detected during the ages of 1-2.

The nephrologist thinks that this is more liver involvement than kidney. So once we have the appointment with the GI, both of the doctors will get together to figure out exactly what we need to do and what testing needs to be done. They could do a liver biopsy right now to figure this out, but it isn’t benign and would rather go the less intrusive route. I am grateful for that.

Thankfully, Bentley is not suffering from hypertension, so he does not have to have a kidney transplant right now. Because he has great blood pressure and is not showing signs of extreme kidney problems, they can only monitor him for now and figure out what testing they need to do.

We have a one month follow up appointment on April 30th. He wants to do genetic testing for Bentley and have ultrasounds on Danny and my kidneys. The ultrasound for our (Danny and me) kidneys are to make sure that one of us doesn’t have the disease, or if we do which form. This will help to figure out what Bentley has. Also, if one of us has polycystic kidneys we can pass it on to our other children. Dominant is a 1 in 2, and recessive is a 1 in 4.

Right now we are doing alright. We are trusting God and really feel like He is walking us through this for a reason. On the way home, we were discussing what a privilege it is to suffer for God. It seems weird to say it, but it causes us to love and trust God more when we suffer. He has set up everything for us: people who care for us and a God that is faithful, sovereign, and full of grace and mercy, plus has given us salvation. I won’t say that we don’t have our moments of tears and sadness, but God’s grace on us has been so abundant. We don’t want Bentley to suffer, but to live a life that he can serve and glorify God. I’m sure that it will get harder as we find out more and more, but for now we are hanging in there!

So we could use your continual prayers.
For Bentley – For healing and that his blood pressure would stay normal and not cause him to need a transplant right now.

For us – That we would have peace, trust and clarity of mind as we meet with the doctors. That we would glorify God in this trial.

For the doctors – That God would really guide them with every aspect of Bentley’s diagnosis and treatments, if any.

For the baby that we are having – That this disease wouldn’t affect their body and that they would be a healthy baby.

My ultrasound for checking out everything and to find out the gender is next Monday. If you could pray, that if anything is unusual about this baby that they would find it. Also, that if either one of us has the disease that it would show up and be healed, so that it wouldn’t be a cycle in our growing family.

Lots of prayers to a very great God!!!

We stopped by the GI office because it was right down the hall from our other appointment. Their computers have been down for the past few days so their faxes haven’t been coming through. So, once they get the paperwork and review it they will schedule the appointment.

Bentley’s Check Up

At Bentley’s 12 month NICU check up, the doctor felt that Bentley’s liver was enlarged. He felt like it wasn’t an immediate concern and asked me to reschedule a 12 month wellness check up to get it checked out. Our insurance had just been dropped by our regular doctor, so I had to find a different office. We ended up at a highly recommended office by God’s provision. At his appointment, they didn’t think that his liver was enlarged, but thought it was low. Since this was their first time seeing him, they wanted to get a couple of background things checked out. They scheduled: a chest x-ray to make sure that everything was healed, lab work because at his newborn screening there was a T4 – thyroid problem that had never been followed up on and an ultrasound of his stomach to see what was going on with his liver.

All of these tests were done last Thursday. His lab and blood work came back fine. His ultrasound found cysts in both his kidneys and it is causing his liver to over work. The liver has actually reopened the umbilical cord vein. So, the pediatric office is scheduling us appointments with a GI (Gastrointestinal) specialist and a Kidney Specialist. That is as much as we know right now.

We would love your prayers for Bentley and for us. Of course, we would love for him to be healed by God, but if treatments are the answer we pray that they would work quickly and efficiently with no damaging effects. Our desire is for Bentley to live a long healthy life glorifying God.

So far God’s grace has been abundant. He has recently reminded me of how He has been faithful, sovereign and trustworthy, and is giving us another opportunity to walk out our faith.

Welcome Home Bentley!

Exactly one year ago, we brought Bentley home from his extended stay at the NICU. He spent one month and a day there! His homecoming was a complete surprise to me. I walked in and saw that he had been circumcised, and I knew they only did that to (boy) babies that were going home.

I asked the nurse, “When did that happen?”

She replied, “This morning.”

Trying to hold back my excitement, I asked, “So, when is he going home?”

She laughed, looked at me and said, “Today, didn’t anyone tell you?”

“No,” I said in a panic.

I told the nurse, we didn’t have anything ready. No blankets or clothes, but I did have the car seat. She said that was fine and gave us some blankets and we bundled him the best we could with the outfits that we had left for the nurses. After several hours of waiting for the newborn screening test, and all that discharge stuff we left the NICU. The nurse that discharged him was one of my favorite nurses and I was so glad that I got to thank her and tell her goodbye.

It was great. I think the Lord did that on purpose. I would have gotten any sleep the night before if I had known that he was coming home!

A glimpse into last year…

This is a long post… for me. This is more a reminder to me than an update or post.

My journal entry from Feb. 28, 2008

Well, if you can escape catastrophe four days in a row, I might have a “normal” day.

So far, we found out that our refinancing might fall through because the bank doesn’t believe that our house is worth the amount that it appraised for.

Second, my driver’s license and tag has been suspended because the computer at the DMV says that I showed no proof of insurance at the time of the accident. Which, was back in Oct and I was on the phone with the insurance company when the officer was writing the police report!

And… on Monday I developed a fever of 101.7 degrees. I had to go to the doctor’s because I developed a UTI. My fever has continued until last night.

Which reminds me, I dropped a plate on straight on my newly pedicured toe and now have a purple to nail that is going to fall off. Just great!

I really do feel like I’m being tormented. I have not seen Bentley for 3 days, which means 6 visits. I got really angry last night when I couldn’t see him. I’m just getting so tired of waiting and wanting to have him, plus having to explain what’s wrong with him over and over again. I don’t understand why we have to go through all of this right now. If the baby wasn’t enough of a problem, now the house, the car and license and my stupid fever, plus my throbbing toe! I’m tired and I don’t want to do this anymore, even though I know each day it gets closer to bringing Bentley home. I want him here so badly.

Bentley’s respiratory rate is still very high, so they haven’t taken him off the respirator yet. They have started to give him my milk again and he is getting steroids. Hopefully, this will help him improve quickly. They have agreed to let me do Kangaroo Care, which is where you hold the baby skin to skin for several hours. It’s supposed to help them nurse faster and be comforted by you. That’s why I want this fever to go, so I can start to do this! For now that is all the updates for the past 3 days.

Later that day…
Well, I just got a call from the hospital and they said that Bentley is off the respirator! He is doing great. He’s had two bottles already. They said that I can start breastfeeding whenever I come in! Yay!

Right after receiving that call Danny called me to tell me that the car should be reinstated in a couple of hours. Then, not two minutes after we hung up he called back and said the next appraiser was coming out between 1:30PM-2:30PM to reappraise the house.

God your ways are very mysterious. I can’t believe the very minute I’m complaining about my circumstances, You are already solving them. You are so faithful even when I am not. Thank you for your faithfulness and I praise you for the work you have done in our lives, mostly mine, Bentley’s and Danny’s.

Yesterday, I read some of the Psalms and one specifically stood out to me.

Psalm 13
How long, O Lord? Will you forget me forever?

How long will you hide your face from me?

How long must I take counsel in my soul
and have sorrow in my heart all the day?

How long shall my enemy be exalted over me?

Consider and answer me, O Lord my God;

light up my eyes, lest I sleep the sleep of death,

lest my enemy say, “I have prevailed over him,”

lest my foes rejoice because I am shaken.

But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.

I will sing to the Lord,
because he has dealt bountifully with me.

What a difference a year makes!

Mark 9:14-29 really helped me through this time. I remember the sermon on this passage because it stuck out to me so clearly when our church was going through Mark. The point of the sermon was sometimes it gets worse before it gets better. And that was definitely true in my life. Everything seemed to be getting worse and worse. We had so many set backs with Bentley and then all the other circumstances that came up seemed to be going badly made if feel like it really couldn’t get any worse.

Thankfully, God is sovereign and I never forgot that truth. No matter the outcome of any and all of these circumstances one fact could never change. I have my salvation. Jesus Christ dying the on cross for me was more important than anything. Even if Bentley had died, I am still going to heaven. Each day, I thank God for Bentley and for his life and allowing us to walk through our trial trusting and glorifying Him.

Bentley a couple days after being admitted to the NICU.

Bentley on Feb. 28,2008

March 5th — the day he was discharged from the NICU, which was a complete surprise. (A year from tomorrow!!! God is so good!)

A few days ago! Bentley talking to Dada on the phone. He’s a bundle of fun!