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Tuesday, August 28, 2012

That hospital smell

Camille and I tend to quickly wash every piece of clothing we take to the hospital pretty much as soon as we get home.  There is a certain smell that gets in our clothes from the place.  Now they don't stink (although I didn't pack enough clothes for the cath appointment thinking we would only be there one night but that is another story). There is just this odor that my mind immediately associates with CMC-Dallas.  The place is very bitter sweet for us.  I have to admit there has been more than once (ok more like a dozen times) we have said to each other that "we hate this place."  The truth is that without that "place" Addie would not be the happy little chunk of a beauty she is.  That place has put us in the unique and blessed position that we are right now. 

When we got the troubling news last week that Addie might need the TPA to alleviate the clot issue and that we would be going to the Cardiac ICU (aka the 3rd floor) it was both scary as hell but slightly comforting for me since the 3rd floor is place we know well.  All too well.  The faces are generally familiar (although they have new fellows now).  A lot of the nurses we know and the attendings recognize us as we them.  As soon as we got to the 3rd floor, the familiar faces started coming around.  "Good to see yous" were exchanged, but both sides quickly retreated to say that we wished it was under different circumstances.  When a faint pulse was found in Addie's foot after just a few minutes on the 3rd floor room it was declared by the attending (Dr. Koch) that is was a "therapeutic transfer."  The nurses kidded that Addie just wanted to come back and say hi.  As we waited to be sent back up to the 8th floor, more nurses stopped by along with another attending who we know to see Addie, check on us and generally see how all was going.  What a incredibly strange range of emotions it was.  Both good to see these people who do amazing work on a daily basis but tough to see them as it meant we were back.  Back where it all began.

It is an incredible place.  A place that still has more days requiring our attendance, but it is at the same time a very hard place to be and to return to.  The halls are easily navigated now.  The cafeteria easy to find.  The ins and outs of the vending machines and parking a passing thought.  But it still gets me sometimes.  I still hate it sometimes.  I appreciate it, admire it, but at times hate it.  

But we will be back.  Addie will be back.  This time hopefully for a lot shorter time than the first go-around.  And yes, when we get home, the clothes will go quickly in the washer. 

Sunday, August 26, 2012


Thank you Britt for taking these sweet pictures of Addie!

Thursday, August 23, 2012

Cath update

Addie had her heart cath on Tuesday. We went in at 7 am and her procedure finally started at 2. It was relatively quick (we got news around 4), and everything looked great. All her pressures, shunt and aortic arch looked great. They did have to coil her internal mammary artery because it was competing with her shunt. Collaterals (these already existing arteries that can grow very large) are fairly common in shunted babies because your body tries to compensate and make another route for blood to flow. After her procedure, while she was in recovery, Dr Nugent, who performed the cath came to check on her. Her pulse in her right foot was not there, but he didn't seem concerned saying it was fairly common. They would start her on heparin (a blood thinner), and her pulse would most likely be back in the morning. No pulse is caused by a blood clot or spasm in the artery. Addie's blood clot was caused by a sheath inserted in her leg to coil the mammary artery. Yesterday morning, her pulse still had not returned and they decided she needed to be transferred to the Cardiac ICU to be given a drug called TPA, which has some pretty serious possible side effects, to bust the clot. We were transferred to the ICU and one of the nurses there was checking for Addie's pulse and it had returned. It was a therapeutic transfer....maybe a miracle! A pulse not returning is extremely rare, as the doctors had to look up the protocol on using TPA because they rarely use this drug. We had to spend another night at Children's on the regular cardiac floor while Addie stayed on heparin to prevent any further clotting. Her femoral artery is most likely stenosed (narrowed) and the  long term effects are minimal.  They did mention that worse case scenario would be a leg length difference but probably not since she does have blood flow there now. We pray not. 

We got home today around noon and are pretty exhausted. What a whirlwind. Scott and I both thought this was going to be a quick trip to Children's, maybe a night in the hospital, and we would be home. They call this a "bump in the road." This journey is exhausting and is always full of surprises.  Thank you to our friends and family who are a constant source of encouragement. Without you, this journey would be so much more difficult. Thank you to my sister, Lindsey, who kept our other precious daughter. I know she had a blast playing with her cousins and slumber partying. 

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

Proverbs 3:5-6

Thursday, August 9, 2012

Update x2

On a much more positive note than the last post, Addie had clinic today. No EKG, ECHO, X-Ray or labs. Just an exam. It was a pretty quick visit, and Addie looked great. All the nurses love her, and one of the doctors even said she might be the cutest baby she has ever seen. Surely she doesnt say that to everyone! :) She is pretty stinkin cute. 


Oh man! I kept wanting to write this post, but have stopped so many times. I went to book club last night with a fabulous group of girls. We have been together going on 4 years. The last 9 months have been so turbulent for me, and anytime I can get away, I grab it. I had such a great time, but lately, anytime I have any fun, I am reminded of my dear daughter and our situation. Its weird. I always feel bad for enjoying myself. On the way home, I just started crying. I think the long days at home are getting to me. I catch myself worrying a lot and wondering about the future. Addie is precious you see, and I want her here forever. I want to see her laugh and play and live to 80. This whole situation seems surreal....still. Our situation isn't dire  you see, but to me, it is. I want to keep my girl here. I have blocked out most memories from Addie's first 2 months. No more surgeries, no more doctors...lets just grow and live and learn. I am tired of it all. I want to be normal. I want my old life back, but I want Addie in it. Friends, pray for the upcoming months. We have a heart cath in about 2 weeks and an October surgery. We need your prayers and positive thoughts.

Friday, August 3, 2012

Clinic and speech

Addie had clinic this past Tuesday at Children's and an outpatient speech therapy evaluation at Our Children's House at Baylor. Her clinic appointment went great this week. We had an EKG and an Echo. Her EKG looked good. The Long QT her EKG showed last time was normal this time. Dr. Ikemba said that she thought the last one was a computer error and that the computer measured it wrong. Thank goodness!  Her Echo also looked fabulous according to Dr.Ikemba. Addie has a leaky valve and it keeps improving every Echo she has. Addie was so sweet this week when we went. She was talking to and smiling at all the nurses and people that came to see her! Pretty precious. 

The speech therapy evaluation went a lot better than I expected. I was expecting this to be added on our list of weekly doctor's appointments, but it will not be. Woot!! We met with a speech therapist, occupational therapist and a nutritionist. They all agreed that Addie looked great and didn't recommend therapy at this point.  The speech therapist watched Addie eat from a bottle and said she looked wonderful. This has definitely been one of our blessings. Usually heart kids have a hard time learning to eat and gaining weight, but this has not been the case for Addie. She will have a swallow study in the next couple of weeks to see if she is still aspirating milk. Dr. Brenski (the ENT doctor) said that her right vocal cord is compensating for her paralyzed left one so I am hoping that this is keeping her from any aspiration. We will see in a couple weeks. If she isn't aspirating anymore, we would be able to stop thickening feeds and I would hope increase feed time. The occupational therapist said all her motor skills looked great and commented how well she was holding her head up. We are working pretty hard to keep her on track developmentally so she doesn't fall behind when she is in the hospital. 

All in all, a pretty good week for Sweet Adeline!