Wednesday, November 28, 2007

Pictures of Ben at Home

As you can see, Ben is enjoying his time at home--especially bath time with Big Brother Jack!

Tuesday, November 20, 2007

We're Home!!!

After a lot of bargaining with Ben's doctor and the pulmonologist, we were able to bring Ben home late last night on an apnea monitor, but NO OXYGEN!! (This is exactly what we were hoping for all along, because the apnea monitor is so reassuring.) Ben is really enjoying his new surroundings, and probably would have slept through the night if we had let him. He is such an angel baby! We are looking forward to a very special Thanksgiving with our entire family finally under one roof.

The other good news is that, at this point, we are able to get pasteurized donor breast milk from a milk bank in Austin. Because Jack had so many food intolerances, and because I can't make enough milk, Ben's docs want him on donor milk. He's been getting free donor milk as part of a nutrition study at the hospital, but we weren't sure what would happen when we came home. We'll be receiving our first shipment of about 50 bottles of frozen milk this morning, so Bryant just ran to the store to buy a deep freezer! Now we just have to convince the insurance company to pay for the milk..... (We also want to thank our three friends who have already filled our regular freezer with pumped milk. What an amazing gift! You are truly impacting Ben's life.)

So the official stats:
Ben stayed in the hospital for 61 days.
He is now 38 weeks adjusted gestational age.
Today is his 2-month "birthday."
He weighs 5 lb. 12 oz., and is 18 3/4 inches long.

"Benjamin is a ravenous wolf; in the morning he devours the prey, in the evening he divides the plunder." Genesis 49:27

"Sons are a heritage from the LORD, children a reward from him. Like arrows in the hands of a warrior are sons born in one's youth. Blessed is the man whose quiver is full of them. They will not be put to shame when they contend with their enemies in the gate." Psalm 127:3-5

Sunday, November 18, 2007

Still here!

Well, we've been here a few more days and have had some positive developments. Ben had a repeat OCRG test (the one he failed on Monday), with the addition of a pH probe and supplementary oxygen. In a nutshell, this test measures every breath and heartbeat that Ben takes, and the pH probe measures the acidity level in his esophagus to check for acid reflux. They wanted to see if different levels of oxygen would make a difference in his oxygen saturations.

The oxygen really helped, of course, but they also documented that he has severe acid reflux. (More than 30% of the time, the pH in his esophagus is less than 4.0, so quite acidic.) We decided to take steps to control the reflux and measure his oxygen levels for a few days before making a final decision about taking him home on oxygen. So far, controlling the reflux by keeping him upright, lying him on his left side, etc. has made a huge difference in his oxygen saturation levels. We're hoping that when his regular doctor returns on Monday that we'll be able to go home!

Ben's feeding coordination is also maturing, and he's starting to take huge amounts of food. He weighs more than 5 lb. 11 oz.! He's generally very content and loves to be held so that he can look at new "scenery."

Can't wait to introduce him to everyone!

Wednesday, November 14, 2007

Ooops! Just Kidding!

We've had some major setbacks this week. Turns out that Bryant does have MRSA, the dreaded antibiotic-resistant staph infection. (Praise God, he still seems to be healing with his current cocktail of medications). We thought this would prevent us from bringing Ben home, but Ben's doc consulted with an epidemiologist and decided that Ben might just as likely catch an infection in the hospital and might as well come home.

So we were told that we would bring him home yesterday or today. We spent the past few days rushing about getting everything ready and disinfecting the entire house. On Monday, Ben's doc ran a few more tests just to make sure that everything was OK before sending him home. The results of one test were a little suspect--he had 65 episodes of low blood oxygen levels within an eight-hour period--so a pulmonologist was brought in for a consult. In the meantime, Ben's doc happened to be standing right next to him when he had a bradycardia episode (his heart rate dropped by half). I've seen this happen several times a day in recent weeks, but Ben's nurses never charted the episodes, saying that they weren't severe enough to be significant. Anyway, Ben's doc decided that, cosidering all of this, she was not comfortable sending him home.

The pulmonologist visited Ben again today, and she has recommended one of two options:
1. Ben can come home soon on supplementary oxygen and monitors that record his breathing and heart rate, or
2. Ben can stay in the hospital until he outgrows all of this.

Please pray that we'll make the best decision for Ben's health and safety! We want him to be safe, of course, but we're concerned that lying in a crib all day with so little personal interaction can't be good for his mental stimulation and development.

As you can imagine, we were heartbroken that we couldn't bring Ben home today. This was the first day that both of us felt downtrodden in all of this. Please pray for our continued stamina, peace, and wisdom.

The good news is that Ben is growing like a weed! He gained two ounces yesterday and now weighs 5 lbs. 8 oz.!

Thanks for your prayers!

Friday, November 9, 2007

Our Angels

"If you make the Most High your dwelling—even the LORD, who is my refuge—then no harm will befall you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone." --Psalm 91:9-12

Since all of this began, Bryant has joked that he feels like Job from the Bible--attacked from all sides. This week, he truly IS like Job, and he has the boils to prove it! He developed a nasty staph infection in the skin of his leg and backside, and has been in terrible pain. A visit to the doctor and several meds didn't work, so today he went to the hospital where they cut out the worst spots and gave him injections of antibiotics and pain meds. He'll be in a lot of pain for several days, but the infection should improve quickly. The ER docs said that they are now seeing about six cases of this staph infection DAILY! Ten years ago, they might only see a few cases each year. Praise God that Bryant's is treatable and not that horrible MRSA bacteria we've been hearing about in the news. This may delay Ben's homecoming, currently scheduled for Tuesday, so pray for quick healing.

I really do believe that we are under spiritual attack, but that God is protecting us. This was confirmed recently in a very strange and wonderful way. One night this week, Jack and I were eating dinner when he began to dart his eyes and head around like he was looking at a bug fly around the room. He started laughing and said, "It's so bright! It's so bright and shiny!" His eyes settled on a spot out in the middle of the room, and a minute later, he laughed and said, "He's funny! He's so funny!" I didn't give it a whole lot of thought until the next morning.

When we got in the car, Jack looked into the back part of our SUV and said, "He rides in there." I replied, "No, you ride in your car seat," to which he replied, "No, HE rides in there!" A bit perplexed, I ignored his comment. But a few minutes later, as we drove up the ramp onto the HOV lane, Jack shouted, "We go up! HE goes up! The angel flies!"

As you can imagine, I was floored. I felt such a sense of peace, and praised God for hours that He would so vividly confirm His answer to my prayers. From the very beginning of this roller coaster ride, I've prayed for God to surround our family with His angels and protect each of us, especially since we are often all separated, driving late at night, etc.

And to top it all off, when we went to church on Wednesday night, we pulled into a parking space right next to the glass church doors, and Jack pointed at the doors and shouted, "There the angels are!" And of course, there was no one there that I could see.

So despite all of the junk that's been thrown our way recently, we really are fine. We are not overly stressed, afraid, or worried, and we are growing closer as a family. I can honestly say that at this point, we are peaceful--and that's not my normal state. But this is a wonderful way to live!

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." --Romans 5:1-5

Recent Ben Pics!

Here's Ben in his cutie patootie Halloween costume, next to the tiny pumpkin we picked for him at the pumpkin patch.

And thank you Aunt Patricia for crocheting Ben's gorgeous blue blanket. As you can see, he's really enjoying it.

Ben weighs almost 5 lbs. now and is starting to look like a "normal" baby. He's even starting to grow a little bit of a butt, and he has a tiny double chin! Woo hoo!!

Monday, November 5, 2007

Counting down the days!

Ben progressed a great deal in the last week, so we expect him home soon--perhaps by the end of this week! He now weighs 4 lbs. 12 oz. He pulled out his feeding tube, so the docs decided not to replace it and do all feedings by mouth (mostly bottle feeding, some breast feeding). He's off all oxygen and has fewer and fewer problems with apnea.

On the home front, we're feeling a little more prepared now (and a lot less worried about the things we don't have ready yet). We've taken our infant CPR class and have gotten more practice feeding Ben and watching for breathing or heart rate problems. I think we'll be ready enough whenever the docs tell us we can bring Ben home.

Thanks for your continued prayers! We can't wait to introduce everyone to our little man!