Gavin's Journey: April 2007

Gavin is 6 months old!

Gavin:

You brighten our day when you smile. We love your big beautiful eyes. We love when we come into your room in the morning and you grin at us. You are getting so big. You love to scream instead of cooing. You like to scream over other people when they are trying to talk. You like to put your hands on our face and "kiss" our cheeks. You have two teeth and you like to suck your thumb (with the rest of your hands flat on your nose). You are still trying to sit up and roll over but we know it will happen when you are ready. You love your exersaucer that your Aunt LeAnn and Uncle Vic got you (thank you again ;) ) You like to fall asleep sitting straight up in your Daddy's arms. You still dislike cereal and the only thing we can get you to eat is green bean baby food, Mommy's favorite! We cant wait to watch you grow but we are also sad that your not a teeny tiny baby anymore. Happy 6 months.

We love you,

Daddy and Mommy

I have found another HLHS family through Max's blog. The parents names are Bill and Lisa. I have started talking to Lisa and she is such a strong woman! She is 22 weeks pregnant and just found out last week that her baby (boy) has Hypo plastic Left Heart Syndrome. This morning at 9 am they are scheduled to have an appointment with the Pediatric Cardiologist. I know all to well how scared they are right now and I just ask that all of you who read this blog please say a special prayer for them this morning. They are from Tennessee. I hope to one day meet them when we travel to see Adam sister and brother-in-law! Thank you for the prayers. I will update as soon as I hear how the appointment went.

***UPDATE: The following is an email I received from Bill and Lisa:

We spent about 2 hours with Dr. Leski at Vandy this a.m. The first 45 minutes he took pictures. I have to say it was all black, white, and fuzzy to us with the occasional blue and red thrown in, so it boggles the mind how he could see anything. Anyway, then he left to compare our baby's heart measurements to normal babies' measurements and then came back in to chat. He said our baby doesn't fit criteria for Hypoplastic Left Heart Syndrome at this point. He said there isn't really a name for his condition right now, but he'll refer to it as Borderline HLHS. Jelly Bean has 4 chambers and he has all structures forming in his heart, they just aren't either big enough or complete yet on the left. The chambers and structures on the left side of his heart that aren't big enough yet still fall in the low end of healthy heart measurements, some in the 5th and some in the 10th percentile. However, they are very small compared to the measurements on the right side of his heart. One of two things will happen over the rest of the pg: Either he will develop a full-blown case of HLHS or he will begin to develop a healthier heart. Let's take the more optimistic scenario first: If his heart begins to grow into a more healthy one, he will likely still have some congential heart defects that need to be fixed either at birth or shortly thereafter. It is highly unlikely his heart will be normal at birth. At this point, we know he is likely to have a Coarctation of the Aorta. This is a minor heart defect that requires surgery, but not open heart surgery, and should be fixed soon after birth. He also appears to have a hole in his bottom left chamber, referred to as a Ventricular Septal Defect, but Dr. Leski had trouble getting a clear picture of that area, so he's not sure. This might close on its own as Jelly Bean grows in utero or it will require surgery after birth. There are also problems with his aortic valve and his mitral valve; those problems could resolve during the pg or they will need to be fixed through surgery. Some of these surgeries would be open heart surgeries, but one (can't remember which right now) would require a cardiac surgery, but not "open heart surgery." Worst case scenario, Jelly Bean would develop full-blown HLHS. We discussed treatment options, all of which can be done at Vandy. Heart transplant is an option that we could do at Vandy, too, though we didn't focus on that. We focused on the 3-stage treatment. Accroding to Dr. Leski, Vandy currently has high success rates, right up there with Boston Children's Hospital. The two hospitals that have higher success rates right now (and only by a couple of percentage points) are Univ of Michigan and a hospital in Miluakee (name escapes me at the moment). Dr. Leski trained at U of Michigan and the other cardiologist (Dr. Bischell) that would be on our treatment team trained at Boston Children's. When Dr. Bischell came to Vandy several years ago, Vandy's success rates rose significantly. In short, we appear to have excellent treatment options at Vandy, which is such a blessing that we can hardly absorb it. To be able to at least consider staying "in our own back yard" for treatment is so stress-relieving that we are overjoyed. All that aside, the full-blown HLHS treatment scenario is frightening to any parent. We've encountered many success stories and many tragedies when talking to HLHS parents and reading about HLHS on the internet over the past week. While optimistic and encouraging, Dr. Leski said that the treatment outcomes vary widely depending on the complications encountered as HLHS children go through each surgery. While Vandy's success rate after the 3rd surgery is around 70%, that means 70% of the children are still alive 5 years post-surgery. It does not take into account the health problems they face or will face in the coming years. He encouraged us to consider treatment, but also said some parents choose not to pursue treatment for HLHS in the face of such a complex and life-threatening diagnosis. He said they would support whatever decision we reach and will offer all the advice, medical information, and comfort we need while we learn more about HLHS and make decisions about Jelly Bean's treatment. We will see him again at 34 weeks (that's 12 weeks from now) for more tests to see if we can get a better idea of how Jelly Bean's heart is developing. We won't know more until then, and we may not have a true picture of what JB's heart is like until he is born. So now we watch, wait, seek 2nd opinions, plan, and just move forward while praying for a strong, healthy heart to develop. The goal is to make it to August 16 without Lisa going into labor. There is so much more. We could go on and on. For now, we are thrilled to even have a CHANCE at fewer problems than HLHS involves. We believe God is answering our prayers even as we speak. We continue to URGENTLY need your prayers, in fact now more than ever, as we enter this period of waiting. We'll be launching a blog soon (hopefully tomorrow) so we can get more info out there as we know it, in addition to maybe getting more of the info Dr. Leski provided out there for folks to read. We are doing well today and feel much better today than yesterday. Most of all, we remain steadfastly confident in God's promise to give us the strength we need to face anything life throws at us. Please, continue to pray, pray, pray!! Love, Bill and Lisa

Praise God, your prayers worked! Continue to keep them in your prayers as they are not out of the woods with this. Please pray for their next appt. with the ped. cardiologist. Thanks!