Tuesday, December 30, 2008

Crap, crap, and more crap...

I'm sure you can tell by the frequency of my posts just how much time I have. Every single day feels like a replication of the last, with a few variations thrown in here and there. At the moment we have a system, though, which consists of someone being near the girls around the clock. This has proven to be a good thing since all of them have refluxed through their noses to the point of choking. Had we not been present to pick them up and suction them, who knows whether or not they would have recovered. We honestly have very few moments throughout the day when we can just enjoy the girls. Rather, we are constantly caring for them as if they are still in the hospital. It's a very clinical experience most of the time and we look forward to the coming weeks, during which we can transition into more of a family mode.

Our crappy and crappiest news revolves around our visit to the cardiologist yesterday. Olivia had a CT of her heart, the point of which was to provide a more detailed map of its structure in order to determine how to repair the problem areas. Unfortunately the CT showed that Olivia is missing her main pulmonary artery. Combined with her other heart issues, she essentially has one of the worst forms of Tetralogy of Fallot and thus her condition is more serious than we would like. She likely has only one functional lung as a result of the heart defect, which is fine; she can live with one lung. The very sad part is that in order to correct everything, she will need an open heart surgery. In fact, because the body often rejects the parts used to correct the problems, she will need multiple surgeries. Apparently some people have surgeries every few months and others as infrequently as every 5 years until adulthood, when the surgeries can decrease in number. There are so many more details, but these are the main highlights. Overall, she has a very very very long road ahead.

Makenna received some pretty bad news yesterday, too. She has an Atrial Septal Defect, which will also require open heart surgery. Fortunately there appears to be no rush at the moment. So long as her heart remains in good condition, she will not have surgery. Once it begins to enlarge, they will move forward and repair the problem. This surgery should be pretty straightforward, but it's still major surgery. Our cardiologist said that most children with ASD have a repair around age 2.

So FANTASTIC...we have two daughters with heart conditions. How exactly does that happen? It was not a result of the triplet pregnancy, not a result of prematurity...it wasn't even genetic. It was all completely random. I'm having a hard time believing that and a very hard time wrapping my brain around all of this. I absolutely cannot even fathom the fear and pain they will experience as a result of these surgeries. I cannot even begin to relate to these poor little girls, yet I will need to be there to comfort them and to reassure them that everything will turn out just fine. For now, I suppose the first step is to convince myself.

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10 comments:

Mary Dunbar said...

I'm sorry about the news of the heart conditions. It is a heavy weight to bare, I'm sure. I will be praying for the girls. They are strong and will pull through this, as will you!

Mary BBC

Megan Jannise said...

Oh, Crystal, I am so sorry. I have been following your story on TC (I am Gris_n_Mags). I will keep you in my prayers. Just remember how strong you are: you went through bed rest, a triplet pregnancy, and the NICU. You CAN do this- you have to be strong for your daughters. I know we are basically strangers, but I think all triplet Mommy's have a connection, and I am available to help. I am serious- if you need anything at all, PLEASE feel free to reach out. My email is Megan_Jannise@yahoo.com. Good Luck!

Megan

Mimi said...

I am so sorry to hear of the bad news. You are a wonderful mommy and with love and surgeries, your girls are going to be healthy little ones. I will be keeping your family in my prayers

FrenznickFive said...

Crystal i know how hard it is to be told your baby needs surgery... we have been living with the uncertainty and fear for Avery since my 18 week ultrasound when we learned she only had one functioning kidney and her "good" one was not so good :o( so we too have surgeries down the road and possibly even the need for a kidney transplant...i am sick with worry and fear and i know how hard this is for you. and as for the clinical part of the first few months at home, just SURVIVE, thats all you can do, it goes by in a fast blur but you will come out of it, the turning point was around 6 months for us...and now at 10 months the babies are SO much fun and we do feel like a family not an onsite hospital...you can do this, stay STRONG momma!

Haymonds said...

Just a thought--God won't give us anything we can't handle, even if we have to rely HEAVILY on Him to get us through!! That is super rough and tears my heart out--but if anyone can love those little girls through the toughest times, it's you. Our prayers are with you.

Jennifer Watson Jenkins said...

Holly is right, no one can give those girls more love than you and Paul can. All three of those girls were sent here to this world for a purpose and because of their future hardships they chose you to be their mother. I am still so amazed by your strength and love.

Amanda said...

Hello Crystal -

I came across your website through an online group. I have been following your three beautiful daughters, especially Olivia. My son had TOF and DeGeorge which we found out 4 hours after he was born...he is our first and it is completely random...not genetic. We have had a very hard road but our successes and accomplishments have been so much greater! Trevor has had two open heart surgeries and had hopefully his last will be in 2-3 months. He has pulmonary atresia which has been the main focus of the surgeries, but also has a VSD and ASD. Please know that you are not alone on this journey, anytime you need specific support, please let me know (www.thefamilypost.com/thwingfamily).

My one advice right now...CT scans are great, but nothing can tell you more about your daughter's heart like a heart cath. Don't let any decision be made until you have a surgeons view of the heart... and do your research on which surgeons specialize in these surgeries.

Above all love your little girls and enjoy all the ups because they will make the downs manageable.

All our love,
Amanda

Sandi said...

Crystal. Your precious little angels are going to be strong and make it through all of this with flying colors. Why? Because there mom is a strong woman! It's going to be a difficult journey, no doubt, but it's all going to work out. You have a strong family and a strong network of friends that will be there for you all. I know I am far away, but if you need to vent - I am here for you. As for the reflux and throwing up through the nose....our 3 are still doing it as well. It's hard to sit there and watch them day after day, night after night going through that. But we are ALL great parents, so we sit there and we suction them, make sure they are breathing and hold them when they cry after it's all done. I am so sorry that you are going through this as well. I know how this part feels. And again, you can ALWAYS vent, cry, and/or scream at me to let it out! You are in my thoughts and prayers!

Vanessa said...

First of all....I LOVE the picture of the girls! Even from the back they are the cutest set of triplets I've ever seen. :)

Now for the not so fun part. I know your heartbroken by the recent news from the cardiologists. It's hard for any mom to grasp that kind of news. As for Makenna, how big is her ASD? My friends daughter was born with a moderate sized ASD and it closed completely on it's own. So keep your faith. And if she does require surgery...well then Olivia will hold her hand and help her through it.

Now Arianna doesn't have pulmonary atresia so things are different for us but I want you to know there are so many advances in science who knows where they will be in a few years. I'm assuming the multiple surgeries would be to replace the pulmonary valve. Well...they are doing those in the cath lab now so stay hopefully. She will definitly need open heart surgery but hopefully not as many as you are thinking.

I know you all are so busy right now so I hope you can find some time to rest.

Much love,
Vanessa

~Mrs Sandy~ said...

I'm sorry to hear this.You and your family are in my thoughts and prayers.
Hugs, Sandy

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