Saturday, October 4, 2008

Pacemaker and other heart things

We still haven't spoken to the doctor, but from what we've learned from our nurse, Benjamin has a complete heart block. His heart's electrical currents are being blocked from illiciting beats. This is most likely b/c his heart is bruised from his surgery. So they are using a pacemaker to make his heart beat. If he did not have this pacemaker right now, his heart would not beat.

The pacemaker is not in his chest currently; it is on the bed next to him, and he has wires attached to his stomach that are connecting it to him. For this reason, I cannot breastfeed him right now. We don't want to risk messing with the connection between his pacemaker and his heart. So I am pumping every three hours. Ugh.

We have tried twice to give him a bottle. The first time, it took about fifteen minutes to get him to eat about 90% of ONE ounce. He is very sleepy and as we all know, he is a momma's boy and does not like that bottle! But he did surprisingly well. The second time we tried, he only took about 1/3 of an ounce. If we can't get him to take the bottle, he will have to be put on a feeding tube. I really, really hope we can either get him to take a bottle or (more ideally) they will let me breastfeed him.

Cardiology comes around once (or sometimes twice) a day. They will check his pacemaker by simply unplugging it. If he continues to need it, they will let him keep it for up to seven days. (During which time he will have to stay in the intensive care unit, or PCICU--Pediatric Cardiac Intensive Care Unit and will not be moved to the floor. What this means to us is that only one of us can sleep in his room, but we may both go back to the RMH anyway--we're not sure yet.) If, after seven days, he is still requiring the use of the artificial pacemaker, we will have to reassess the situation and explore the option of installing a permanent pacemaker in his chest. (Obviously, please pray this is not the case!!)

So right now we're just waiting. Killing time. Being tired. But very grateful for what we have.

The baby in the unit right next to us coded a few hours ago. They made the parents leave the room (but all the walls are glass) while about 15 medical personnel worked to help save this baby. They brought in a crash cart and were giving him chest compressions while the inconsolable mom bawled in her husband's arms. It was almost more than I could take. (I happened to be walking back to our room after pumping and I witnessed this.) We talked to the dad later and he said that his son had a heart attack but there were able to get him stable. He is seven days old. Please pray for baby T.

Speaking of babies, we spoke with the parents of the baby who had to have surgery on Thursday (that bumped Benjamin's surgery). Their baby is doing much better than they expected. They knew about five months into the pregnancy that their baby would have heart problems and induced her a week early. Their son was born Wednesday night at 9:00. Once born, they assessed his heart defects and determined that they were more severe than what they could tell prenatally and he had to have surgery 12 hours after he was born. He is doing well as of right now. We told her that we didn't mind being bumped one bit and that we had all our friends praying for him. Matthew and I were both teary-eyed as we walked away from her. People are just precious.

Benjamin's blood pressure is low right now, as is his oxygen saturation level. They keep monitoring it b/c it keeps hovering around the danger zone and making the 2000 machines in here beep. I am going to hear beeping in my sleep!

Nashville is THE place to be evidently. There was a marathon and half-marathon this morning and the presidential debates are next week. But more importantly than those, the Vanderbilt/Auburn game kicks off in less than an hour. Both teams are undefeated going into this game; it is the ESPN game of the week. None of this means anything to me except that there are a LOT of people outside. Many of them sitting outside RVs and pickup trucks with coolers and beer. Blocks and blocks away from the stadium. Hours before the game. That only appeals to me if there are grilled hotdogs involved.

Well, I guess I'll sign off now. There's not much more news. I really want to talk to the doctor(s)to see if I can breastfeed. Not just b/c I hate pumping but b/c I really think he'll eat much more from me than a bottle and I want to avoid a feeding tube!!!

More later. I'm not going anywhere. :)


jumblejamble said...

This is Christa (Sada's mommy) from Babyzone. I just wanted to let you know that I've been praying for you guys and Benjamin!
Also, I read the Bring the Rain blog as well! That lady amazes me!
I'll keep praying!

Anonymous said...

Angela and family- this is Marcia- your mom's cousin, in Nebraska (I guess your cousin as well...) I am amazed at what the drs with the Lord's help can do. Our family is praying for you all.

heidi marie said...


hang in there. i have been thinking of all of you and praying for you as well. it wasn't too long ago we were in your shoes. i hope that benjamin's heart starts to beat on its own and they don't need the temporary pacemaker anymore. just remember our little ones are so strong. they are fighters.

Anonymous said...

We are continuing to pray for Benjamin. I hope you can breastfeed him soon and he is off the pacemaker soon.
love from Sue and Ayla

Melanie said...

Angela, I'm praying so hard for all of you. By all of you, I mean everyone in that hospital with you: doctors, patients, and families alike. I have also contacted several friends who are sending their prayers and good wishes as well. I'm sending huge hugs and love your way.


Stephanie said...

Angela, I am crying. This is just too much for me to handle.
I am so thankful that God is hearing all of our prayers on behalf of Benjamin.
I am so sorry. I am so sorry. I am just so sorry.
I want him well NOW and I want you to be able to nurse and I want you away from those beeping noises and back home in your safe house.
I am so sorry. Tears are hitting my keyboard.
We will pray.
He is so precious. I HATE THIS.

Erica said...

We are here praying for Benjamin and everyone else involved. I hope you can breastfeed soon. There has to be way with the help of nurse that it can be done. Thanks for keeping us updated. Love ya

Anonymous said...

Angela and Matthew-
You're definitely in our thoughts and prayer...we're checking for updates all the time...much more than you have time to write, I'm sure. We just want you to know how much you're loved and prayed for. Special hugs for Benjamin.

Kevin and Marina

Bethany said...

Praying for you guys! I hope you can nurse him soon ... and I hope you get home soon!

Kristen said...

Hi Angela-
This is kzmom (from Downsyn). I am sending you & Benjamin good thoughts!

Anonymous said...

Hi Angela,
I cannot begin to tell you how much your attitude reveals Christ working in your life. In the midst of such distress, you are such an example to others. I will continue praying for your family and for that precious baby. By the way..your still hilarious! Love you, Juliet

Elizabeth said...

Still praying for your family. I wake up every morning thinking of Benjamin...

Anonymous said...

This is from Andrew. I miss Mommy, Daddy and Benjamin. Namma showed me Benjamin's big boo boo on her computer. We touched the screen. Everyone keeps me so busy playing, I don't have time to think about being lonely. I have been a good boy every day for Yampa and Namma. I have only pretended to be fussy. Tomorrow we will go to Andrew's house and see Frank and Namcy and play in Andrew's playroom. Call me!

Susan Massoud Farley said...

I am praying for all of you and checking the blog all the time for updates! Don't you feel so supported knowing all of the prayers and love surrounding you? I am continually struck by your faith and positive outlook. Thanks for keeping everyone updated.
Love ya,
Suse :)

Amber said...

Will continue praying for his little heart to heal!
So glad to hear about the newborn's status, too. Better than expected is fantastic!
I hope Benjamin's neighbor friend gets well. Lots of babies and children out there to pray for.
love ya girl:)

datri said...

{{hugs}} Adding prayers.

Christia said...

Definitely praying for little Benjamin, and his neighbor, and the newborn. Wow! Hugs to you and I hope you're able to nurse him soon.

Sara said...

OMG, I was crying from reading about the baby next door coding...but the comment from Andrew just pushed me over the edge.

I have been thinking about all of you every single moment today. Ben and I talked about Baby Benjamin today and he petted the screen as we looked at his pictures. He said Benjamin is "like Illy" (aka Lily) but "ouch." :(

Take care of yourselves.


Branton Family said...

Please know I am thinking of you and praying for you all! Hang in there. Amy

JennaW said...

Catalina thinks Benjamin just needs a kiss on his "owie" and he'll be okay. Thinking of you. JennaW

Zelia said...

Hi Angela all the way from South Africa...
I am experiencing a similar situation albeit with my eldest son who just turned 22 years. He is a sport / health fanatic freak who had a dual chamber pacemaker implant in April... Needless to say, the desperation and everything that you have to handle on a daily basis is not easy. He was a professional rugby player since the age of 12 and he's got to cope with this loss in his life... I have 2 blogs if you need to read more ...

I wish you strength and courage for every day and keep your family in my prayers.
Kind regards
God Bless
Shelly Beach
South Africa

Kara said...

You're in my prayers Angela. I'm glad it's going ok.

I hope you are able to breastfeed him soon.

Just wanted to let you know you're in my thoughts. Kisses to that sweet boy from us.

Amanda-The Family News! said...

I am praying for your family and the other babies and families going thru the same things....

Amanda in SC