Monday is surgery day

So Addie's first surgery has been set for Monday.  It will be a long day for everyone, especially Sweet Adeline and the doctors, nurses and others here at Children's.  Below is a general breakdown of what will be going on and a rough timeline for everything.

The process begins with the anesthesia team around 7am.  Thankfully Camille and I will get to see Addie before they start and then again right before they take her to surgery.  Anesthesia will take about one hour.  They will be placing some central lines, breathing tube and catheter as well as other things.  Then the next couple of hours will be opening up her chest up and getting her started on the heart/lung bypass machine.

After the surgical procedures (2-3) hours they will do an echocardiogram and if everything looks good they will start to wean her off the bypass machine.  She will then be taken back to her room and it will be another 1-2 hours for them to transfer all of her lines, IV pumps, sensors, chest tubes and everything over from the surgery to her crib in her room.  After that, we will get to see her. 

Addie will need to have several procedures done during this first surgery.  They will do what is called a DKS, which is where her pulmonary artery (PA) will be spliced into her current aorta.  This basically replaces her now too small (hypoplastic) aorta with a good size one by using the PA.  Addie's PDA (which is a ductus that is keeping her alive right now and kept open with a medication known as PGE) will be closed off.  Additionally her aorta will be opened up and patched so that it is bigger.  This patching of the aorta helps create much better circulation from the heart to the rest of the body.  This particular procedure also addresses the coarctation (narrowing) of her aortic arch that she has now.  She will also have what is called a Arterial Septostomy.  This basically increases the opening from her right atrium to her left atrium.  Normally there isn't a permanent opening here, but in Addie's case this is actually a good thing and they want to make that pathway larger.  Lastly the surgeon will place what is called a BT shunt.  This is a Gortex shunt that replaces the blood's pathway back into the lungs which was sacrificed by the PA becoming Addie's aorta in the DKS previously explained.  This shunt is temporary and will be taken out during Addie's second surgery (Glenn procedure) to happen in a few months. 

Needless to say there is a whole lot of "re-plumbing" that needs to be done.  Some of the scarier things about the surgery and post-op include the fact that during the patching of the aorta they will have to put Addie in "circulatory arrest."  Basically they cool her body down to about 37 degrees.  This allows them to stop the bypass machine, do the patch and preserve her brain and organ function.  After they are done with this they will have to slowly re-warm her.  This adds some time to the overall surgery.  Another scary part is that when we see Addie for the first time after surgery and for a while afterwards she will have a whole lot more lines, tubes, monitors and IV's than she does now and be intibated and on a respirator.  They keep telling us to be prepared because she just won't look like she does now.  The other scary thing, but routine for these surgeries, is the fact that they will keep Addie's chest open for 1-2 days after the surgery.  This is done so if anything happens they can have quick access to her to fix it and also allow her body to recover from all the work.  They sew a patch over her chest so it is not exposed.  If all goes well and as planned the surgeon will close her chest by Wednesday. 

Please specifically pray for Addie's surgeon, Dr. Joseph Forbess and his team, for a successful surgery. 

That's basically it and that's plenty for her and us. 

We thank everyone so much for all the thoughts, prayers, meals, visits and offers of babysitting Ellie.  And speaking of Ellie, she is doing good. Her Aunt KK took her to a friend's birthday party today and gave Mimi a break. I also got to do Face Time with her the other night while I was here and she didn't really want to see me that much, but she wanted to see Addie.  Big sister genes already kicking in. 

Small miracles

It started with us up at 5am, was quickly met with a text from a good friend saying she was up too and praying for us (as so many did throughout the day) and the day "ends" sitting in a cardiac ICU room at Children's Medical Center of Dallas with a newborn baby hooked up to lots of machines, our almost 2 year old at home with grandparents, and my incredible wife and mother of this gift across town in a separate hospital with one of her sisters.  Needless to say it has been a long day.  But what needs to be said more often and much louder is that it has been a good day.  A great day! 

Adeline came into this world fast just like how the whole day seemed to go after she got here.  Thankfully the delivery went well and Camille is recovering quickly.  Obviously, she is anxious to get here to be next to Adeline. 

Below is a list of things that went well during this first day. 

1. A fast, uncomplicated delivery;
2. Adeline being stable enough after birth so that Camille and I got to hold her for a few minutes before she went to the NICU;
3. That Adeline hasn't shown any other health issues other than her heart defect we already knew about;
4. The fact that Adeline did not need to be put on a respirator (a common side effect of the PGE);
5. That Camille's body is recovering quickly and she may be here at Children's later this morning;
6. A smooth transition from Presby Dallas to Children's by the Children's transport team (caught rush hour traffic in Dallas-never fun, but "Big Mike" handled the drive well);
7. The familiar face of an attending we know working in the  cardiac ICU when I arrived with Addie; 
8. Tremendous support at Children's on the first day/night from friends and family;
9. An incredible amount of texts/emails/FB posts & messages throughout the day from people praying and encouraging us and Addie;
10. Getting to hold Addie on the first night;
11. That Camille and I got some sleep; and
12. And that the stress for the whole day was actually less than I had feared.

These 12 things may look trivial or simply coincidence, but I will debate any theologian on the fact that they were, in fact, miracles.  Small, maybe, but miracles all the same.  And I am convinced they were all the direct result of so many prayers by so many. 

Is it just the first day of a long journey? Yes.  Will there be bad days?  Yes.  But these miracles got this journey started in the right direction.

A heartfelt thanks to all those doctors, nurses, and EMT's at both Presby and Childrens' for doing a great job!

I am for ever a proud husband of a courageous, loving wife and now a father of two sweet little girls.





    

Tomorrow

It's official. We go in at 6am tomorrow morning. The final OB and perinatologist appts were normal with no changes which was good. Ellie and Dixie, Camille's mom, came along and Ellie got to see "pictures" of Addie. Ellie was sweet and even said, "Goodbye doctor," when the perinatologist left the room.

We know it is going to be a long day and the first of many, but the gift at the end, finally meeting Adeline face to face, will make it all worth it. Please pray for Camille and that the delivery goes smoothly. Also be praying for the doctors, nurses and staff at both Presby and Children's. These folks and Camille are the ones doing all the work tomorrow.

Also thanks to everyone on FB with all the suggestions for Camille's playlist. She is compiling it now. It will be a great distraction for the day.

Luke 1:37

Waiting anxiously to meet, "the flower of my heart."

38 weeks

We have a date. Next Wednesday, May 16, we will induce if Addie doesn't come before. I don't really have much to report today other than that both doctor's appointments went really well yesterday. Addie is weighing around 6 lbs 15 oz right now and is doing everything she is supposed to be doing. When I think about her delivery, I am often reminded of what our pastor says during baby dedications. He talks about your child having a good life, not an easy one and also reminds parents that the child doesn't belong to them, the child belongs to God and that children are only theirs temporarily. These words have such a different meaning to me now! They are important words, and ones I hope I hang onto. Scott and I both stand strong in our faith and are determined to give Addie a good life, as we know hers is not going to be easy! "But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31 Please continue to keep our family in your prayers!

Protection

One of the things that I have come to cherish in being a father is that of the role of protector.  Maybe it is a male chauvinistic trait that I can’t get past, but providing a sense of security is something that is important to me.  I like being able to protect Ellie from things in the world from the smallest spider to hitting her head on the corner of the coffee table.  To have her cling to me when the thunder rolls makes me feel better as a father.  For Adeline, one of the hardest things to come to grips with is the sense that I may not be that to her.  She will need more than I can give her.  She needs so much protection and I may not be able to provide it.  Because of this feeling I sometimes dread her delivery for the simple fact that her greatest protection will be removed.  Her greatest Earthly protection right now is that provided by the womb.  Camille got some really good sonogram pictures on last week that showed Adeline’s face.  It was wonderful to see her precious face, but it hit me again, as it does every time we go to the doctor or I dwell on the coming day, she is safe where she is.  She is happy.  She has no problems.  Heart defects don’t matter there.  She is protected.  No surgeries.   No scars.  No hospitals.  No ICU’s.  Once she gets here it changes.  It all changes.

And here is where I need to “lean not on my own understanding” and to continue to drive out the fear of her arrival.  Even if I cannot protect her as I would like, I have to realize she will be protected.  She will be safe. 

“I hereby command you: Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go.”  Joshua 1:9

I guess my greatest shelter for Adeline will be to remember this for myself and to teach her to remember it too.

Maternity Pictures

Thank you, Britt, for the wonderful maternity pictures!

I couldn't help but put this picture in here. I love these two so much!

36 weeks

It is hard to believe I will be 36 weeks pregnant tomorrow. So many parts of this pregnancy have crept by, but I feel like this 3rd trimester has really flown by! We are fast approaching my due date, which is May 23. The plan is still to induce between weeks 39-40 if I don't go into labor before that. We haven't scheduled the actual induction date yet, and will get to do that at the 38 week mark.  

I had my OB and perinatologist appointments yesterday and they both went really well. Addie is still growing and "tolerating her heart condition." She is measuring 5 lbs 14 oz right now, which is kind of funny to me since Ellie was only 6 lbs 6 oz when she was born. I got to see a pretty good profile picture of Addie yesterday, and she looks pretty precious. We have our last ECHO at Children's Friday, and then we will see them again once Addie is over there for her extended stay.

As far as being prepared at home goes, I think we have done all we can for now. The real stuff starts when we bring her home.

Please keep Scott, Ellie, Addie and I in your prayers in the coming weeks. Specifically pray for a safe delivery, transport of Addie over to Children's, and for a speedy recovery for me so I can be at Children's with Addie as quickly as possible. Thank you all for your continued thoughts, prayers, kind notes, and warm comments.