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Thursday, May 31, 2012

2 weeks

Addie was 2 weeks old yesterday. She has endured more in her 15 days than I have in my 30 years. We prepared ourselves for the worst, and have been so fortunate with Addie's progress. We are still in the Cardiac ICU for a couple more days, but will hopefully be moved to the 8th floor soon. They want Addie to gain some weight before going upstairs. Hopefully by Saturday or Sunday we will be there. Scott went back to work yesterday, and I think it was tough for him to be away. We both feel like we are living 2 different lives. One at home with Ellie and the other up here at the hospital. Soon enough, we will be altogether. We are ready!

Tuesday, May 29, 2012

Oh happy day!

Yesterday and today have been really good days for our Sweet Adeline. She is making some really big strides, and we are getting close to moving up to the 8th floor if everything keeps going as planned. Addie is completely breathing on her own now. This was a huge step for her. She looks more and more like the baby I had on May 16th. The only thing she has on her face is the feeding tube. She is only on 3 medications, 2 times a day, and we are starting to try and bottle feed her. They have warned us that the feeding might take a while for her to get because she hasn't ever taken anything by mouth.

This is what we have been up to today:



Both Scott and I are getting in some good snuggles with our girl. It has been 1 week too long without holding her. Praise the Lord!

Sunday, May 27, 2012

Thankful

On this Sunday, Scott and I have a ton to be thankful for. Our sweet baby had another good day yesterday, and Scott and I got to go home and stay the night at our house. My sweet Mom stayed up here with Addie last night while we played with Ellie and got some rest. It has been 72 hours since Addie's last SVT. This has been something that I have prayed hard about since SVT's and single ventricle kids are not a good combination. Overall, it has been a good couple of days. We are so thankful for those of you who pray for us, text us, come visit us, bring us food, and think about us. The support we have received has been overwhelming!



But as for me, I will always have hope; I will praise you more and more. Psalm 71:14

Friday, May 25, 2012

A better day.

Yesterday was a struggle.  Today not as much.  That's just how it goes with these kids.  That's what they keep telling us.  That's what we will have to become accustomed to.  Today was definitely an up day for Adeline though as she reached a couple of milestones in her journey.  She had the rest of her drains removed and most importantly, her breathing tube taken out.  The breathing tube was a big thing.  She still has an oxygen cannula (the little tubes that go into your nostrils) but is doing the breathing part on her own.  She fought hard to stay off the ventilator and not have to be re-intubated.  She won that battle.  Going on 36 hours since her last SVT.  Another battle she is winning.

This is the view from my current "office."

At random times during the day, it hits me.  Camille and I have been basically living in this hospital for going on 10 days.  Ellie hasn't seen her baby sister since day one of her life and won't for several more weeks if all goes well.  We have leaped, not stepped, from our normal world into one where normalcy is measured in cc's/hr, artieral pressures and blood gases.  Adeline's room is a space shared by us along with so many others with the common goal of getting Addie and us out of it quickly and safely as possible.  In the meantime we live in this alternate world.  All this while trying to maintain our normal one with so much help from so many great friends and family.  One day these worlds will unite and our family can feel more like a "normal" one. 

Thursday, May 24, 2012

Baby steps

Today was not the greatest day. Scott and I are constantly reminded that this whole process is 2 steps forward, one step back. Addie had 3 SVT's (Supraventricular tachycardia)from 1-3am last night. Her heart rate didn't get as high as it has been before during these but it was still just as scary. In rounds this morning, they talked about trying to extubate her, pulling out her other chest tube, and getting her pain medicines pretty much completely off. After rounds, Addie had 3 more SVT episodes. So then it was decided that today would essentially be a day of rest for Addie. The doctors decided that they needed to get her SVT's under control before they extubated her. The victory for the day was that she got her other chest tube out and she stayed stable this afternoon. The step back was obviously the recurring SVT's. So our little fighter didn't overachieve today, but she did achieve so we will take that. We are focusing on the small victories, and trying not to let the steps back get us down. Tomorrow is another day and we know she is working hard.

Wednesday, May 23, 2012

Big day

It is crazy to think it has only been 2 days since Addie's surgery. These last couple days have flown by but have gone really slowly at the same time...if that makes sense. Not really sure where all our time goes up here. Last night Addie had her first "bump in the road" since surgery by having an SVT episode. Her heart rate went to the 320's....pretty scary! Today has been a really great day so far! They pulled out one of Addie's chest tubes, a UVC (belly) line, put an NG tube in, started 1 cc/hr breast milk, turned off her dopamine, epi, and lasix, went down on her pain medicine, and gave her an ECHO. She is making some great strides! Hopefully tomorrow her breathing tube will come out. We have a strong little girl on our hands! She is definitely a fighter.

Tuesday, May 22, 2012

Next big step

So after rounds this morning Camille and I went home to play with Ellie a bit, take showers and change clothes. It was nice to be back home if even for a couple of hours. One of the many great nurses we have had here, Jen, called and told us that the surgeon was running a little faster than expected on his schedule today and that we needed to return pretty soon to see Addie before they started her chest closure. We got back just in time. Donned some surgical caps and masks and were able to step in and see, talk and even touch Addie's hand before the procedure. The chest closure should only take about an hour. We are even more convinced now in the power of prayer getting Addie to this stage quickly and in good shape so keep them coming.

Good night!

Addie had a really good night last night. They are planning on closing her chest sometime today. We have been so thankful for all the thoughts, prayers, messages, etc. Please keep the prayers coming!

Monday, May 21, 2012

Addie's room

Here she is in all her glory and with all her equipment!  Although it may look scary it isn't as scary as Camille and I had thought.  She is good and in good hands!

Settled

Addie is settled in her room now and is stable. She has been a rockstar so far! The next 24-48 hours are critical so please continue to keep us in your prayers! The Lord was definitely with us today. The power of prayer is amazing!

Surgery update 11:30

Surgery part is done. She is off bypass. Should take another hour or so as they clean up and get ready to move her back to her room. Her echo also looked good and her heart beating on its own. All sounds good. Thanks for all of the well wishes and prayers.

Surgery update-10:30

They told us that they are rewarming Addie off the circulatory arrest and she is doing fine. Should get another update soon.

Surgery update

We got an update around 9:30 and they told us Adeline is now on the heart/lung bypass machine and everything is going as planned.

Surgery has started!

They took Addie back to surgery around 7:40am. We got a call about 30 minutes ago, and they told us everything had started and she was doing well.

We will continue to update as we know more.


Addie's angel was holding her paci in this morning before they took her back. :)

Saturday, May 19, 2012

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. 

Thursday, May 17, 2012

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.





    

Tuesday, May 15, 2012

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."

Tuesday, May 8, 2012

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!