Elliot’s surgery was yesterday and he did very well. The surgeon met with us about 1pm to talk about what he found. His first words were that he was amazed at Elliot’s strength and condition before surgery. When he got into the heart he found that the atrial septum was definitely thickened and closed. That means that Elliot should have needed surgery immediately after birth to stay alive, but he didn’t. Somehow he was getting enough oxygen and held out 6 days until they did surgery yesterday. There is no explanation for why he didn’t need surgery.
The surgeon was happy with the condition of Elliot’s heart overall, but did have two areas of concern. One is that Elliot’s aorta is much smaller than what he would like to see, about 2mm. When working with an aorta this small they run a risk of kinking or clotting after the surgery. Usually it will show itself in the first 48 hours, which are critical. However, small aortas are the biggest cause of inter-stage (between surgeries) death in HLHS babies. So we’ll monitor him closely and pray that no problems arise.
The second issue is that Elliot’s lungs did build up a little bit of muscle which increases the pressure inside the lungs. That can cause problems with the "passive" system they are creating to get blood flow into the lungs. However, this should also show itself within the first 48 hours, so we’re watching and waiting.
Below are links to some pictures after his surgery. They might be a little graphic for young viewers so please screen them before you show your kids, if your kids are following Elliot’s surgery.
After surgery
Elliot’s Equipment
After Surgery#2
The surgery scheduled for this morning was postponed after they got
Elliot prepped and started getting ready to put the IVs in. The reason
for the delay is that when he was born he had a blister on his toe that
scabbed over on the second day. Dermatology took a look at it, but
never swabbed it. So…the surgeon felt that we should hold off until
they get a chance to culture it and make sure it’s not a viral
infection of some sort. Because the surgery is such a stressor to the
baby’s immune system, they don’t want to take any chances with the
baby’s immune system being already compromised by a viral infection.
I do not have a date on when they will do the surgery. The good
news is that it won’t make a difference to Elliot’s heart if we wait a
few more days. I’m guessing that the surgery will be on Tuesday, but
I’ll confirm when I find out. Prayers are appreciated.
Hey everyone,
We met with the surgeon at 3:30pm this afternoon to discuss tomorrow’s procedure. He explained again what the procedure would entail and what the risks where. one thing he did mention was that Elliot’s Aorta was much smaller than what he would like to see. This presents a challenge because part of the procedure is to re-route the aorta from the undeveloped left ventricle to the strong right ventricle. The aorta is what carries blood from the heart to the rest of the body. A small aorta makes it difficult to carry the necessary amount of blood from the right ventricle to the body. So that’s our primary hurdle for tomorrow’s surgery, as far as we know right now.
They will take him in for anesthesia about 6am and after a few other procedures, the surgery will begin sometime around 7:45am. The surgery itself takes about 4 hours, so we won’t have a full picture until sometime close to lunch tomorrow.
The doctor was confident in everything else going on with Elliot, his lungs and oxygen levels look good and the rest of the heart looks strong.
Elliot is taking everything in stride. He looks absolutely incredible. We’ve been working with him on his pacifier, as kids with these types of challenges usually have problems feeding since they don’t start feeding until much later. The more we can do to help him before and after the surgery, the better.
Sunette and I will join Elliot around 5:30 in the morning to spend some time with him before he goes in. We’re both pretty nervous because there is still a 1 in 10 chance of not making it through the surgery. Even after the surgery, the smaller aorta could present a challenge in getting adequate blood flow to the body.
We appreciate everyone’s support and we would really appreciate your prayers for tomorrow’s surgery.
is a BOY!! Elliot Thomas Payne was born this morning at 8:20am, weighing in at 6lbs 8oz. He was born at Children’s Hospital in Philadelphia, where we’ve been transferred to treat Elliot’s restrictive atrial septum and his Hypoplastic Left Heart Syndrome. Here are some pictures and an update that I put on his carepage:
The morning started off bright and early with Sunette and I
arriving at 6am and Mom, Spud and Mema arriving somewhere between there
and 6:30am. They prepped Sunette and took her back for anesthesia while
I waited in her prep room and the support trio waited out front. At
about 8am they called me back saying they were ready to begin the
C-section. It was a tough 20 minutes watching Sunette wince as the
anesthesia set up, but everything took its toll and before you knew it
they were saying they were ready to take the baby out. I peeked over
the curtain and watched our son come into this world. Elliot Thomas
Payne was born at 8:20am and came out pink and crying at 6 1/2 lbs.
They cleared his mouth and throat and he let out his first cries. Those
were good sounds to hear, let me tell you.
They showed us our new baby boy and whisked him away to be
evaluated to check his oxygen levels and determine if he needed the
immediate heart cath to open up the atrial septum. There was a full
team of doctors in the next OR ready for surgery if it called for it;
fortunately Elliot’s lungs were strong and his 02 levels were good so
there was no need to do the surgery. That is excellent news and really
increases Elliot’s chances of survival and good recovery.
Well they took him up to the Cardiac ICU while Sunette was
transferred over to the Hospital of the University of Pennsylvania
(HUP), which is next door, to recover.
The afternoon saw Sunette working her way out of the anesthesia fog
over on the 7th floor of HUP, Elliot continuing to work out those lungs
and practicing sucking the pacifier over on the 6th floor of CHOP and
the support team making laps between the two.
Mema and Spud headed to our room at the Ronald McDonald House while
mom will stay with Sunette tonight and I’ll stay with Elliot. That’s
probably the way it’ll be all this week.
It is probable that Elliot will have his Norwood procedure
tomorrow, the first stage of the HLHS repair, so please pray for wisdom
for the doctors and strength for Elliot. The tentative time right now
is 10am. I’ll keep everyone posted on that.
So, Sunette is doing great and did a phenomenal job in the
C-section, what a strong woman; Elliot is doing great and is resting up
for tomorrow’s surgery, what a strong son; the support trio is filling
its role to a "T", what a great team; and dad is trying to keep his
emotions in check and be a cheerleader.
As Sunette and I have been staying at the Ronald McDonald House just outside of Philly during the last week and a half, we’ve had several days of just doing nothing; which has been fantastic. I was going like gang-busters before we got here and the rest has been nice. Especially in light of the fact that we have our C-section next Tuesday and life is gonna get crazy quick.
So I brought my little travel Taylor guitar up here with me, as well as my laptop, and a new little gizmo I picked up before I came up here. I knew that I wanted to do some recording while I was here, but I couldn’t afford to pick up a mini portable recorder like the Zoom H4, super sweet I might say. Instead, I picked up a Belkin Tunetalk for my iPod.
This is a cool little deal that you plug into the bottom of your 5g iPod and it allows you to record in stereo straight to your iPod’s hard drive. You then just hook the iPod up to your computer and you can import the files to your software of choice.
For kicks, and since I’m completely stuck on Ryan Adams right now, I decided to record a cover of his song Easy Plateau from his Cold Roses album. Excellent artist and an excellent song. Lawyers: this is not my song, I’m not selling it, I love the song and just recorded it for kicks, don’t sue me, I’m poor. Now that I got that out of the way… I recorded my little travel guitar using the Tunetalk and then imported those into Cubase, my recording software. I then listened to those tracks and recorded vocals using the Tunetalk. After that I added some percussion courtesy of Toontrack’s EZDrummer plug in, using the Latin Percussion add-on.
Yeah, the timing’s kinda all over the place, but it was just a fun little experiment. I really dig the Tunetalk. My only gripe is that the stereo mic is not very directional, so you can’t tell if I’m on the left or the right when I’m recording. That kinda stinks if I wanted to record a jam session and get some separation of the instruments. Anyway, check out the tune and lemme know what you think.
I think the vocals are a little hot. I may remix and repost, but we’ll see.
Easy Plateau
Yo!! I’ve gotten sidetracked by posting updates on the baby’s carepage . For those that don’t have the address yet, bookmark it: http://www.carepages.com/ServeCarePage?cpn=BabyPayne&extrefid=tlcinvite
Or you can go to www.carepages.com and type in BabyPayne. That oughta get you there. Here’s the latest installment. You’ll have to forgive the copy/paste between update outlets.
Let me first say Holy Mamasita at the
responses and comments left by everyone. Thank you so much for the kind
words and the prayers. Sunette and I can definitely feel the prayer
support.
We had a great visit at the hospital today. It started bright and
early, with us arriving about 7:30am to register at the Children’s
Hospital of Philadelphia (CHOP). This morning we were set to have
another fetal echocardiogram and another full ultrasound. The echo was
going to be with Dr. Rychik, the fetal cardiologist that we’ve read
about on some other carepages and blogs. We were pretty psyched to hear
that he’d be working with us. We certainly feel that we’re in capable
hands here at CHOP. During the echo you could tell he felt very good
about what he was seeing.
The thing that we’ve feared the most from our most recent diagnosis
of an Obstructed Atrial Septum, is how it affects the lungs. When a
baby has HLHS (hypoplastic left heart syndrome) the lungs have to be
perfect for the 3 surgeries to work that are needed for HLHS. With an
obstructed atrial septum the lungs build up pressure all through the
pregnancy and don’t allow the lung vessels to develop properly, pretty
much negating anything they could do for the HLHS. Babies with HLHS and
an obstructed atrial septum have about a 30% survival rate. Babies with
just HLHS have a 90% survival rate.
During the echo he decided to try a procedure to determine if blood
flow was truly getting through the atrial septum, which is what we
want. The procedure involved giving Sunette 60% pure oxygen for 15-20
minutes and measuring the effect on the fetus’ heart and lungs. This
gives them a good indication on how good the bloodflow is back and
forth from the lungs, as well as across the atrial septum.
After the procedure he explained that although there is a little
bit of a restriction across the septum, it doesn’t look like the
bloodflow is hindered much by it. In fact when they administered the
oxygen it resembled the bloodflow of a normal HLHS baby. Now that is
good news! That’s the first bit of good news Sunette and I have gotten
since we started this at 20 weeks pregnant, about 4 months ago.
He feels very strongly that the baby would be a good candidate for
the HLHS procedures and that the lungs have not been greatly affected
by the restricted atrial septum. There are still some decisions that
need to be made on how to handle a deviation in the septum they found,
but overall the baby looks to be in much better shape than originally
thought. Mind you, HLHS is still a deadly congenital heart defect and
there are some scary procedures to take place, with lots of recovery;
but they’ve done this before and HLHS babies have a great chance of
survival and a great chance at living a normal child’s life.
So that’s our good news for the day. I wanted to share it so that
you guys could be happy with us. We believe the prayers are truly
making a difference and I know that God is in the middle of this.
That’s today. Now we have a week to hang out until our next appointment. Let’s see….what to do? Did someone say matinee?
Well, the last five days have been absolutely crazy trying to finalize everything for our trip to Philly and our move to Columbus. I had a todo list about 5 miles long and somehow I checked off the last item this afternoon about 5pm. We leave in the morning at 7:30 and will be gone until September sometime so there were a ton of loose ends to tie up.
We’re set to go right now. We’re staying at the Ronald McDonald House of Southern New Jersey in Camden. This is only about 20 minutes from the Children’s Hospital of Philadelphia and they have shuttles during the day to take you. That’s a good thing; I could only imagine what taxi fare was going to run us trying to get back and forth.
I have to say that Sunette and I have been completely overwhelmed with the support that we’ve received from friends and family. I mean, we have pretty much left our entire move to Columbus, and the work that has to be done on the new house, in the hands of our close friends. Talk about going beyond the call of duty. I don’t think I’ll ever truly be able to show the depth of my gratitude for everyone giving of their time and resources. All I can say is I pray that God so richly blesses you as you have blessed us.
Again, I’ll be creating a carepage for the baby once I get up there, so that will be another way folks can stay up to date. Thanks again for all of your prayers and support.
…week together just the two of us
…4 days in the house we designed and built ourselves
…walk down Bugg Road
There are too many “lasts” this week. It’s a bit depressing but I know that it’s all for the good. We did find a house in Columbus, nothing special, but it’ll do well for us.
We did decide to go to Philadelphia to pursue the best possible chance of survival for our baby. We have a real sense of peace about this decision now. At first we didn’t and we were ready to stay in Atlanta. I think that was really our way of completely letting go and putting the baby in God’s hands. I think we have done that and even as we decided to go to Philly that peace remained. I think we’re doing the right thing and God is really opening doors and blessing us during this time.
So we leave on Tuesday and will be gone 2 to 2 1/2 months. We will be staying in the Ronald McDonald House in Camden, NJ, which is about 20 minutes from the hospital apparently. I will be creating a carepage for the baby when I get there so those that are interested in following only the baby, and not have to endure the other things on my blog, will be able to do that. I’ll post a link to that when I have it.
So there we are, going to Philly on Tuesday, and coming home in a couple months to a different house. Just a little bit of change going on right now.
To those that are visiting my blog for the first time. This started out as a collection of postings about my life, be it music, computers or just odd ramblings. Over the past few months this blog has begun to focus more on our pregnancy and our unborn child. As we have received each diagnosis I have been updating this blog with the information about Hypoplastic Left Heart Syndrome and the latest diagnosis of Obstructed Atrial Septum, both are described here . There will still be posts of random things about music and computers, with the hope that you may find something interesting or learn a little something, and it is also a way for me to maintain some level of normalcy through all of this.
So, check out the blog, don't take it too seriously, but it will be a good way to stay up to date on Baby Payne and everything that we experience in Philadelphia and beyond. Oh, and pick up a CD on your way out. Thanks!
We go from one extreme to another in our decision. Earlier today we were pretty much dead set in not going to Philly; in letting God do whatever He’s going to do by delivering in Atlanta, either heal this baby or take it home. Then we got home and we spoke on the phone with a family who’s baby has HLHS and the obstructed atrial septum, who was in Philly and has come through with fairly flying colors. Mind you, this is one of about 4 in the last two years at Children’s Hospital in Philly that have had positive outcomes. After speaking with her, now we feel that life is an adventure and this is the baby that God has given us, for one reason or another and we want to give it the best chance at life. Which means going to Philly.
So we’re back and forth; asking questions and rationalizing. Like, "God can heal this baby in Philly or Atlanta", "Does he need us to do something, or make some decision to initiate His action", "Can’t he heal this baby through the doctor’s that we’ve been blessed with?" All these and more go through our heads about every 5 minutes.
So now we’re torn. We’re now thinking of heading to Philly, at least we were 5 minutes ago.
