Tuesday, February 28, 2006

Laughter Is the Best Medicine

Thank you so much for your prayers. You all must have been praying for Jackson. I had an appointment scheduled for him on Monday to see a speech pathologist. Over the weekend, the stutter all but vanished and so I was able to cancel the appointment. Thank you all for praying and praise God! Frankly, I did not fear being a couple with two kids with special needs. It was simply that I did not want to cause Jackson to start stuttering because I did not handle our circumstances well. It may have helped that last week was the most normal week we have had since Jonathan's birth.

Jonathan is doing very well. We go to the cardiologist tomorrow for a check up and to have his staples removed. Some people who have seen us have asked if Jonathan has gotten his staples removed yet. Jamie looks them dead in the eye and says, "Oh, I already took them out with my needle-nosed pliers. It didn't hurt him at all!" You can see this look of horror and incredulity cross their faces until he starts laughing. :) We are definitely on the up and up - we are laughing more and more. That is definitely a good sign. For a while there I thought I may never laugh again and if I did, it would be wrong.

I took Jonathan to the Bell Center today. He did well and I have things to work on with him at home. I asked to weigh him. With just a fresh diaper on, he weighed in at nine pounds, thirteen ounces. I think this may be more than when he went in for surgery! Yeah! He is eating like a champ. For those of you who have breastfed your kids, you probably have no idea how much they consumed at each feeding. Right now I pump and give it to him in a bottle so we can keep tabs on how much he is consuming. Before the surgery, he would max out at around 550 mL or so. He might hit in the 600s every so often. Now he is in the 700s and is inhaling the milk. It is so wonderful to watch and to listen to that noisy snorting as he eats! AAAHH! What a wonderful sound. He eats like he did before but now we know it is staying on his body rather than burning up immediately upon consumption.

Jamie and I were on the phone one day last week. He was with someone who was taking pictures for a project. Jamie wanted the guy to take the pictures differently but the guy was not open to suggestions. As Jamie was telling me this, I interrupted and said, "Is the guy still there?" Jamie said, "Yeah, he's here." I said, "Did he hear what you just told me?" He said, "Yeah, he heard me." Then he said, "Yeah, I'm talking about you! I don't like the pictures you're taking. Why can't you take some from a different angle? I am paying you good money and would like you to take some of my suggestions. I don't care what has worked before!" I started to shrink inside myself and could not believe he was talking like that to anyone. Then I realized that was just it. He would not talk to anyone like that. At least, I hoped he wouldn't. I started to laugh slowly, hoping it was a joke. Jamie got back on the phone and distractedly said, "Honey, I've got to go and take care of this." I still thought, "Surely not. Please don't let this be real" and continued to laugh, hoping he would start laughing, too. He started laughing and said, "Gotcha!" I cannot tell you how good it felt to laugh like we used to - I laughed to myself all day thinking about it. Thank goodness for humor!

I truly believe God will not protect me from harm just because I have been "good." I know He is in control but that all things happen within His plan. Please pray that I find the strength to continue to let go of my dreams and my will and to replace them with what He reveals His dreams and plans to be for me and our family. Pray that we continue to adjust. Pray for our health.

Thank you for your prayers, thoughts, encouragement, and friendship.

Julie
juliewarren@mindspring.com

Friday, February 24, 2006

As usual, thanks to all of you for your prayers, emails, phone calls, notes in the mail, and gifts. We could not survive this if it were not for you and your encouragement. The Lord has really provided comfort through each of you.

When we brought Jonathan home last week, it was reminiscent of our time coming home from the NICU - scared that he was coming home too early. His breathing was still fast, he was on five different medications that we had to administer in some combination three times a day, and his congestion was more than with which we were comfortable.

Now, Jonathan's skin looks great, he is so happy (except when hungry or tired), his breathing has slowed down considerably (Jamie timed it last week at 60 breaths a minute compared to 37 breaths a minute now), he is talking a TON, he is smiling a bunch, and his congestion is minimal if not nonexistent.

I had another scary episode the other day. Jackson actually was playing with Jonathan while Jonathan was strapped in the swing and I was watching. He lost his balance and leaned on Jonathan - smack in the middle of Jonathan's chest. I was rather upset and checked Jonathan's staples and was scared to see his chest contorting a tad. I called the cardiologist's nurse line (for the tenth time). She told me to calm down (I was in tears) and not to worry. If the chest bone had repositioned, they could not do anything anyway. Luckily, Jamie had noticed the same thing the previous day. DS kids' chests tend to heal with bumps because of an excess of bone at the place of trauma. I had not yet noticed it and Jamie had. Thank goodness - otherwise we would have assumed it was my fault.

A sweet incident was when Jonathan cried the other day. Jackson found a pacifier and promptly stuck it in Jonathan's mouth and kept it there until Jonathan took it, Jackson softly crooning to him. It was so sweet - I got it on tape if you want to see it!

Jackson started stuttering even worse last week. He could barely complete a sentence. I got in touch with a speech pathologist this week. She will evaluate him next week. I am no speech pathologist but I do think this is all related to our stressful circumstances. In fact, it got worse when Jonathan went in to surgery and was in the hospital. I am hoping that now that our lives are beginning to be more in a routine, he will relax. I will be really hacked if he develops something as a result of all this - we have enough on our plates and I hate that he is an innocent victim in it.

Thanks to each one of you for your interest in our story. We appreciate you and your prayers!

Julie:)
juliewarren@mindspring.com

Thursday, February 16, 2006

Jonathan came home from the hospital on Friday afternoon. Jamie's parents kept Jackson that night so we could settle in with Jonathan. That proved to be a wise choice. I was feeling scared and needed time to adjust - how I should hold him, how I should feed him (try breastfeeding or keep with the bottle), if he would be sore, etc.
Jamie's parents spent Saturday night with us so we could get up and go to the Marathon Sunday morning kid-free. Alas, it was not to be so.
We had a laundry list of symptoms to watch for in the event Jonathan started to do poorly - puffy eyes, swollen feet, fever, agitation, poor appetite, trouble breathing, etc. Saturday night Jamie was concerned about Jonathan's rate of breathing. He started timing Jonathan's respirations - they were at 60 per minute. Jamie called the doctor and the doctor said it was okay. Jonathan's breathing became more gravelly and raspy as the night wore on and Jamie called again. The doctor said we could come in and have an echocardiogram done Sunday morning. We decided that we would take two cars. Jamie would follow me. I would leave my car at the point I would pass off the timing device in the relay exchange. Jamie drove me to where I would pick up the timing device and begin my run. Jamie left me around 8am to go see the doctor. Jonathan had a third echo done and it showed his lungs retaining the same amount of fluid as before. The doctor was comfortable with this and we had more peace of mind. I was just scared that he had gotten through the big surgery and then something terrible might happen simply because we ignored a symptom we should not have. Never was it more true to say "Better safe than sorry."
The WAKM relay team raced well. Stacy ran first. William ran second. I ran after William. Steven took the fourth leg and Josh ran the last seven miles. We all met him near the last half mile and ran in together (I suppose "together" is relative. Josh took off and Steven stayed with him. The rest of us followed as best we could!") I was simply thrilled to be a part - doing something concrete for my child. I was so glad that I was able to complete my portion of the race without mishap. Thank goodness! I was not really worried. I just wondered how I might feel. I was tired but that was about it.
We can never thank all of you enough for your help. Some of you brought us meals or gave blood for Jonathan's surgery. Others have been prayer warriors. Thanks to those of you who have sent us anonymous cards in the mail - how sweet and helpful! Thanks to those who ran in the race or donated to the Bell Center. We can never repay you but we will pay it forward, as Jamie says. We will make certain that we pass on your legacy of giving.
Right now, Jonathan's lungs are still acclimating to his heart. This has caused congestion. His lungs are secreting fluid in reaction to all that has gone on. At first, Jonathan's body was retaining the fluid in his right lung. On Tuesday, the doctor said that his lungs were clear. Yeah!
Although Jonathan's lungs are relatively clear, he is still coughing. He probably has mucus and other gunk in his lungs that have yet to be cleaned out. He is not wanting to eat either. This puzzled me because he was such a great eater before. We think his throat must be raw from being intubated, from acid when he gags up his awful tasting meds (potassium chloride specifically), and from coughing.
He is napping twice a day and sleeping nine hours at night (not every night but close to it). He is smiling and talking again (he did not while he was in the hospital). He seems glad to be at home. Jack is glad he is here, too. Jack kept inquiring about him. We finally took him to the hospital waiting room and explained that Jonathan was there but we could not see him because the doctors were fixing his heart. That pacified him. Seeing friends and family in the waiting area seemed to answer questions as to where everyone had been going without him.
Watching Jonathan heal is like watching that liquid nitrogen man from "The Terminator." Every time he got shot, the liquid nitrogen closed over the wound and you could not tell anything had been there. Jonathan does look like he has a zipper down his chest but the holes from the drain tube, the tubes going to his heart, and the central line are all closing up nicely. The tape from all the tubing left marks almost like sunburns all over his abdomen. The blankets from the hospital made it worse. Slowly but surely his skin is healing and there is just a ghost of a layer of that damaged skin left behind.
This little guy has been through so much in the first three months of his life and has been such a trooper. He has hardly cried and smiles through it all. We just love him so much. We feel doubly blessed. Our lives will be more challenging but there are no promises that life is easy. I fall into the lie that I deserve an easy life because I have been "good." True peace and contentment is derived from true surrender. I am learning to surrender to the Lord. I don't always want to do it or like doing it because I feel like I am giving in to an unjust situation. However, I don't just want to survive this life - I want to LIVE it and live it abundantly like Christ promised. I can have abundant life if I just let go. Hang on and be bitter about life being unfair. Let go and live an abundant life. Hhmmm... I think I will go with the latter.
Julie
juliewarren@mindspring.com

Saturday, February 11, 2006

Home from the Hospital

It amazes me that a short 4 days ago, our little boy's heart was stopped...being repaired, and now we're home. The miracle of modern medicine is something that I will never again take for granted. We're so fourtnate that we live in the U.S.--first and foremost. We're also blessed to live in one of the most advanced medical cities--Birmingham. I made a career decision to keep us here 2.5 years ago. Had I gone the other way, we'd have gone through this alone and at distance from our families.


This experience has been surreal. I caught myself several times comprehending that our child had open heart surgery. I honestly pictured such challenges as some far off thing that other families had to deal with--almost like it was something they brought on themselves. I guess I have been judgmental (for some weird reason). I was wrong to ever think that.
These scary experiences really are a way for God to show his glory. I have fought those type of situations in my life--because they are often painful and unwelcomed. When YOU set a goal and the process is painful (for example, training for a marathon), often you have a big payoff at the end. If you finish the race, all the pain is worth it. I get that. I do that.
What I haven't got for a long time is that God does the same thing. The pain (like in physical training) does things for you that you can't see. And, the payoff isn't about you at all. It's bringing you closer to the one who started this for you. The "goal" is intangible and not at all "performance" oriented--like finishing the marathon. Seeing that such experiences can have big payoffs is a paradigm shift for me. It's the kind of payoff I could never conceive. It's the ultimate in letting go of control. I have grown to trust God more the last 3 months. Even though he gave us a child with a condition I didn't want--I trust him. He has shown his might and power in amazing ways that I wouldn't have seen otherwise.
David, a high school friend of mine, reminded me recently that if you believe that God's good in all things, then you have to believe it FULLY. So, in the pain and in the joy, God's good. I'm starting to understand this better.
I also get sense of what can happen when God's people pray. We'll never know how many people have prayed for us this week. There are literally hundreds--if not in the thousands of you that have lifted us up. Churches in different states that have had us on prayer lists. Your prayers ultimately brought upon God's will. They were answered with resounding "yeses." I'm relieved and thrilled that our son has made it through this big hurdle. But, the strange thing is that I get the sense that God would have been just as present if all this hadn't gone so well.
I covet your prayers of intercession for the next 6 weeks. There are serious risks that Jonathan has. We've got to watch fluid build up and his breathing vigilantly. His breastbone is broken from the procedure. It's wired shut, but we've got to be very careful. An interesting note, he has 27 staples closing this incision on his chest. I find it fascinating--not upsetting. If you're interested, email me. I'll send you a picture now. Otherwise, I'll wait to post pictures of that until it heals up some more.
Sue, Julie's mom, went home yesterday. All of you should call her 'St. Sue'. She was wonderful--basically ran our house this week. I will never be able to thank her enough for her love and help. She did the same thing when Jonathan and Jackson were born. Thank you, Sue. You being here was a balm for Julie and I.
I'll continue to post updates and thoughts. This picture below is from this morning... at home after his 'breakfast'.
Jamie

Thursday, February 09, 2006

Moved Out of CICU

Last night around 5pm, Jonathan was moved into our room on the 5th floor at UAB. Dr. Pacifico reports that he's doing "Super." This is a huge move. He was only in CICU for about 30 hours. Julie went home to be with Jackson and her mom, Sue. My mom stayed with me and Jonathan. We got some good time together. He's eating again (milk) and seemed to be livening up. I got the first look at the incision. About 26 staples and much shorter than expected. It was really interesting.

The spot where his chest tubes were bleeding a bit, but this morning it's under control. His central line is the only thing still stuck in him. The nasal cannula will come out as soon as his oxygen saturation levels level out above 90 -- they're high 80's without the supplemental O2 right now. I held him for about 3 hours last night. It felt good.

Julie didn't sleep much last night, so please pray that she gets some rest today. Sue's with her at the hospital. I'm trying to get some work done. Also, please continue to pray for Jonathan's lungs to relax. All of your support is amazing.

Jamie

Wednesday, February 08, 2006

First Post Surgery Pic

He's swollen and groggy, but awake enough to give the "power fist" to everyone in this picture.

Jonathan's breathing tube came out this morning. His CO2 levels shot up for a while, but some meds brought them back in line. He had a bit of stridor (tightening of the trachea) when they took it out. A breathing treatment helped with that. That was the only concerning thing this AM so far. But it's resolved for now. One of the direct pressure leads in his heart was removed, too. Some bleeding there, but they gave him some blood to replace what he lost.

He'll be in the CICU all day today. Maybe one more night. We'll know more after Dr. Pacifico's rounds. Keep praying for clear, relaxed lungs.

Jamie

More Progress

I saw Jonathan tonight at 9 PM. He was awake long enough for me to talk to him. He grabbed my finger and squeezed it when I spoke to him. The vent tube removal is scheduled for 4 or 5 AM this morning. If he can breathe well on his own, he should be out of the CICU by Wednesday night.

Keep praying for his little lungs to relax. The doctor and nurses are pleased that he's doing well. More posts Wednesday AM - probably around 10 AM.

Jamie

Tuesday, February 07, 2006

"According to Plan..."


These are the exact words of Dr. Pacifico. Things went well today with Jonathan's recovery. We're still not out of the woods yet, but he's very pleased with the repair and the slow, steady progress he's making. You can see how much equipment is involved.

We got to see Jonathan around 10:45 AM. He's off the pacemaker. I can't tell you how great it is to see his heart beating kowing that it's working how it should be have been all along. Jonathan looked much better than Julie and I had been prepared for. He's a bit swollen, but his color's good.

The main risk at this point is the lungs and vessels not adapting to the new pressures (albeit the correct ones). If you've followed Jonathan's story, you know that oxygen saturation was a metric we mentioned often in the NICU. Pulmonary artery pressure is what we're watching now. We need Jonathan's lungs to relax and not tighten. A major constriction event could be life threatening. There are drugs to help mititgate this likelihood, but drugs can only do so much. The good news is that tonight, he's come off the medication to fight that. It's a good sign.

We only get to visit him 5x per day/ 20 minutes each tim in the CICU. My folks stuck around so we could come home for a nap and dinner. I'm headed back in a few minutes to see him at 9 PM.
Please pray for his little lungs to relax and adjust. Your prayers are being answered with "yeses". Thank you all so much. Enjoy the pics from today.

Jamie

Praises!

We got the message about 8:30 AM that the major portion of the surgery was over, Jonathan was off the heart/ lung machine, and everything went great. Julie and I are now in the CICU conference lounge -- just met with Dr. Pacifico's chief resident, Dr. Goldberg.

He reports that everything has gone according to plan. They finished up around 9 AM. No surprises inside during the procedure. All the repairs were successfully done. Jonathan's heart is beating as it should -- they temporarily took him off the post-op pacemaker to check. This is great news so far!

A special thanks to those who donated blood. Jonathan's got a little of you all running around in him. Please pray now for a healthy recovery. More posts after we go in to see him - in about 15 minutes.

Jamie

6:15 AM, Surgery Starts at 7 AM



Jonathan had a great night. I got about 5 hours of sleep and feel pretty good. Jonathan got his anti-biotics and steroids. He got his sedative shots. Our friends Chris and Jayne came into town to be with us -- what great friends! Surgery starts at 7 AM.

The pic of him asleep is the last one I took before we sent him back. We should get a message from the OR when Jonathan comes off the heart/ lung machine. I'll make a post then.

Jamie

Monday, February 06, 2006

Jonathan's Surgery, Tomorrow



This day has been anticipated since Jonathan was 1 day old. Now, three months later, we’re here at UAB Hospital getting ready for tomorrow. Jonathan’s the first case tomorrow, 6:30 AM.

We got here around 11:30 AM today. After paperwork, lunch, labs, x-rays, ekg, etc., we met with Dr. Pacifico and his chief resident, Dr. Goldberg. Some things were confirmed and we found out some risks for this procedure are greater than we thought. Honestly, this was very scary for me to hear. But, we have the absolute best taking care of our son. We'll leave this to God's hands and his sovereign will. We had visits from my godfather, Bill (UAB physician), our friend Joel (UAB radiology resident), and our new friend, Betty. It was good to see them.

Details for tomorrow:
5:30 AM: Jonathan will get some sedation medication to help calm him. We'll walk from the West Pavilion to the Cardiac OR's in the new part of the hospital.
6:00 AM: they'll take Jonathan back for prep and let anesthia do their thing
7:00 AM: the procedure will actually start
Somewhere around 10:00 AM: we'll get a message if he's come off the heart/ lung machine
Procedure will end shortly thereafter
Lunchtime: we should get to see him.
Tuesday-Wednesday: he should be in the CICU. We can't stay with him tomorrow night. We'll be back in the hospital overnight once he leaves CICU.

Prayers:
1. Dr. Pacifico and the surgical team for skill, wisdom, and efficiency
2. Jackson - we want his schedule stay as normal as possible.
3. Julie and I - we need to feel God's peace in the most real way than any other moment in our lives. I'm staying at the hospital tonight and need some good sleep - Phil 4:6-7
4. Jonathan - He's a determined little guy. If he needs to fight tomorrow, pray that he would give it all he's got.

Thanks you all for your love and support. Pics are from the hospital today. More updates tomorrow morning once he goes back into the OR.

Jamie