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Monthly Archives: October 2008

Another Day Passes

Wednesday has come and gone and Robert continues to improve. We’re reservedly optimistic, but it look like we might be able to have Robert discharged tomorrow. He got hungry at all the right times and he ate voraciously each time. That was the main concern and hopefully, his blood test tomorrow will show that Robert’s hemoglobin levels are back up and they will let us take him home.

Since we don’t know for sure, we’ll have to wait to book return flights until we hear definite word of discharging Robert, and since Friday is one of the businest travel days of the week, we may wait until Saturday regardless of whether Robert is released tomorrow or Friday. The extra day will give us more time to get to know him and will also allow us time to visit with my grandparents who live nearby.

Thank you all for continuing to pray for little Robert. God has certainly been kind to him.

Wednesday Evening

Robert’s had a great day. He got transferred out of intensive care, he got some wireless monitors so he no longer looks like a marionette, and he’s off all his meds. The doctor says if he’s eating and still pink, he might be able to leave tomorrow! As great as this hospital is, and as amazing as his nurses and doctors have been, we’d like nothing better than to leave as soon as possible and never come back.

Robert is currently sleeping soundly after a big meal and Mommy, Daddy, and Grandpa are hoping to get one very soon. Please continue to pray for our little man. He’s been doing great and our God has been gracious to all of us.

Some More Pictures

In honor of Robert’s first week of life, here are some pictures fom the past couple days:

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Tuesday Wrap-up

Well I forgot to post another update yesterday, but this is truly one of those no-news-is-good-news situations. Robert had his echo and while it indicated roughly the same amount of valve leakage as the original one performed after the procedure, Dr. Gillespie said that the heart still doesn’t sound leaky and the way it sounds is more important than the way it looks. In other words, Robert may quite possibly be in much better shape than we had even initially thought. So please keep praying!

There was no further talk of blood transfusions and his nurse just told me they’re going to give him some iron to help his blood. They’re not to worried about it, though, because he is pink and warm as a baby should be.

Last night after dinner, Robert was wide awake and looking all around. It was adorable and a really special moment for us. Rashell and I would both get down near him and talk to him and his eyes would follow whoever was talking. He was really looking at us and acknowledging us and it was really amazing. I got to change his diaper after he soiled it while I was holding him. I’m sure it won’t be long before that sort of thing becomes annoying, but last night, it was really fun.

Today is starting out well. Robert’s nurse said he ate well this morning and that they’ve taken him off the Heparin and the IV fluids, so he no longer has anything in his lines, which is great. She said they are going to give him oral iron for his blood, and that he will probably be moved to a “step down” unit today, which is also exciting. That gets us several giant steps closer to taking him out of the hospital for the first time since ne was born last week!

Can you believe Robert is already a week old? It’s been a long, hard week, but God has sustained us and He has been gracious both to us and to Robert. Thank you all for your continued prayers and check back for more info.

Tuesday Afternoon

Robert is getting an echo at this very moment. The doctors are of course talking to themselves and not translating most of it for me, but what I gather is that there is not much residual obstruction of the valve (which is good), but there is still some concern over the level of aortic insufficiency (leaking of the valve). I’m pretty sure Dr. Gillespie will need to look at the images and compare them with yesterday’s, so we don’t really have any news on Robert’s valve leakage one way or the other.

The other issue is that his hemoglobin count is pretty low and a blood transfusion was mentioned, but they’ve decided to let him try to rebound on his own. He was put on Heparin yesterday to aid blood flow to his leg below the catheter entry point in his groin. They’re finding only a weak pulse in his foot, but they’re not concerned because his leg is warm and his color and oxygen saturation are good.

So for now, we finish the echo and get some opinions, we wait and see how Robert’s hemoglobin levels do, and we try to get a stronger pulse in his foot. We had thought his lines might come out today, but it looks like they want to keep his peripheral IV in at least for tonight.

More news as it breaks…

A Word from Mom

First I want to thank you all for your thoughts, prayers, and the help we’ve been getting in various areas.  I cannot tell you how much it means to us to know that we have such wonderful family and friends who are praying for Robert and for us.  The huge positive response we have been getting has left me in tears a few times.  You all really mean a lot to us.

This has been a very difficult and stressful week for us, as I’m sure you can imagine.  It’s impossible to get enough sleep and to help my body recover properly but I’m trying.  My main concern is for Robert, and Christopher and I spend every moment we can beside his bed rubbing his head and his hands and just watching him.  I cannot get over how beautiful he is and what a delight he has been to us already.

We are very impressed with the care Robert is getting at this hospital (CHOP).  His nurses are always very attentative and they answer all of our questions with care.  They are only assigned one other baby besides Robert so they are able to spend a lot of time with him when we can’t which is a huge comfort to me.  I hate to think of my baby crying and not having anyone around to comfort him.

We were told that we should be able to bring him home by Friday if all continues to go well, so we are hoping that the week flys by and we can come home this weekend with our son.  I can’t wait for you all to meet him. My family has gotten to see Robert but they have not been able to hold or spend time with him and I can’t wait for them to be able to do so.  It will also be nice to be back home in our own surroundings and have a real chance to get to know Robert and he us.

Please continue to pray for us all.  We hope to see you soon!

Rashell

Final Thoughts for Monday

The point of entry in Robert’s groin has healed, the pressure dressing has been removed, and we have been able to hold Robert for a little while. We’re trying to get him to wake up so we can feed him before we completely run out of energy and have to go back to our room to sleep.

As I mentioned earlier, Dr. Gillespie said, almost as an afterthought, that the amount of leaking of Robert’s repaired valve that he was seeing in the images was significantly higher than he would have liked, but that it doesn’t sound like there is that much leaking when listening to his heart. A third indicator of aortic valve leakage is the blood pressure readings. According to his nurse and the attending CICU physician, patients with significant valve leakage generally have a larger “gap” between the upper and lower numbers when reading blood pressure. All of Robert’s hourly readings have been encouragingly close together. In fact, Robert’s nurse said that his blood pressure readings look like that of a normal healthy heart.

So out of the three indicators of aortic valve leakage, two of the three indicate less leakage than originally thought, and the third has been acknowledged to be inaccurate in many instances. This is very encouraging to us and we are fervently praying that when his cardiologist does another echo in the morning, it will reveal that Robert in fact has much less leakage than originally thought.

We are trying not to get our hopes up too much, but we can’t help but be excited for the possibility. Our hope is in the Lord who made heaven and earth. And our Lord can stop the excess leaking of a mere aortic valve. Please ask Him to do so, and to give strength to Robert and his parents.

On behalf of the latter, goodnight and we’ll see how the little man is doing in the morning.

Debriefing

Robert’s doctor, Dr. Gillespie came and talked to us about 45 minutes ago. He said that he was able to open the valve to a degree that takes Robert from a “severe” stenosis to a “mild” obstruction, which is what we were hoping for. The downside is that it looks like the valve is leaking more than we had hoped. Dr. Gillespie said that he didn’t hear as much leaking as he saw in the pictures and that the pictures can be inaccurate, but if his initial assessment is correct, Robert is in a much better situation than he was, but he still has a problematic heart that will need the oversight of a cardiologist for his whole life.

In the long term, Dr. Gillespie said that Robert will probably need further intervention for his heart, whether it’s a repeat of the same procedure he had today, or a more extensive surgery. Regardless of the case, he said there is no “cure” for his situation, but that there are things that can be done to minimize the impact on Robert’s life and activity. In the more immediate future, we’ll be taking Robert to a cardiologist on a monthly basis for the first few months, then every 6-12 months after that. Robert is now a very low risk for a “sudden event” and any problems that could develop would be gradual and would be evident in a cardiac exam.

In the short term, Dr. Gillespie said that they want to remove all his lines today and observe him with a doppler and ultrasound, neither of which require the IV or contact monitors he has now. In other words, we can probably take him out of the hospital for the first time as early as tomorrow. Dr. Gillespie indicated that since we’re already up here, he would recommend staying here for the rest of the week so Robert can be checked out and we can make sure he’s stable and nothing unforeseen occurs.

All in all, Robert is in much, much better shape than he was before, and God willing, we can bring him home soon. Please continue to pray for Robert and for his parents as we learn to care for him and raise him up as a God-fearing man. He has brought us so much joy already and we’re looking forward to sharing that joy with everyone soon.

Underway…

They just took Robert down for his procedure. The doctor said it usually takes 2-3 hours. I think we will get an update in an hour, then in 30-minute intervals after that. Please lift our little boy before his heavenly Father.

2:38 UPDATE: The nurse just came in to say that they have just begun inserting the catheter in his leg and Robert is doing great. He is anesthetized and intubated but everything is going great so far. We should hear more in about an hour.

3:34 UPDATE: The doctor has successfully navigated the balloon to the valve and is in the process of inflating it as we speak. Robert has been doing great and there have been no clinical changes in his status. The doctor thinks he will be finished in 30 minutes so we should be getting another update at four. Please keep praying. This is the most dangerous part of the procedure.

4:02 UPDATE: The doctor has completed the valvuloplasty procedure and is happy with the results. He has done some imaging of the repaired valve and it looks very good. He is going to take one more picture then remove the catheter and sheath and dress the incision in Robert’s leg. The nurse is expecting him to be brought back up top his room in the next 20-30 minutes and there he will be awakened and extubated. They’ll want to monitor him for a little while and it’s looking like we’ll get to go see him in 45 minutes to an hour.

Please pray that the repair will be effective for the long term, that the repaired valve won’t leak too much, that Robert will recover quickly, and that no complications arise. Thank you all for your continued prayer labor.

Surgery Today

We met with some more doctors this morning. Robert is the next case to go down to the catheter lab and they are expecting that to be between 12:30 and 1 (11:30 and 12 Central time). That’s about 30 minutes or so from now. It’s not a firm time but it does mean Robert will be going in soon.

We are, of course, quite nervous about the entire situation. But we know that God is in control and that is a huge comfort. The doctor who is performing the procedure is evidently very good and his specialty is pediatric cardiac intervention via catheter, so if there’s anyone qualified to do this, it’s him. Also, all the doctors have been remarking about how perfect Robert is otherwise. They expect him to tolerate the procedure very well and recover quickly.

Please pray for strength for Robert, skill for the doctors and nurses, and peace for Rashell and I. We have family here and are surrounded by your love. Thank you again for your concern and prayers. God willing, I’ll be able to post some very good news in a few hours.

For now, here’s a pciture of Robert with Mommy and Daddy, Grandma, and Uncle JJ:

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