Wednesday, February 15, 2012

12 pounds of solid baby

Olivia is doing great and getting bigger everyday. Our schedule so far is pretty busy. I thought there would be this huge amount of free time where I could accomplish a lot of things, yet I haven't found the elusive free time yet. It seems like when I am not taking care of Olivia I'm washing bottles, defrosting breast milk, preparing medicines, cleaning up dirty diapers that do not make it in the basket on the first shot (pee diapers). I will admit I am a social dragonfly and might lose some useful time throughout the day because of it. The problem is that the Harley Davidson room can get very boring so Olivia and I spend a few hours a day hanging out with our Ronald McDonald House friends. All of these factors make for an overwhelming day and no blogging. I apologize for not keeping everyone up to date. Olivia is still seeing a doctor once a week, pediatrician yesterday, cardiologist next week, with a lab work-up here and there. Last weeks cardiologist appointment with the amazing Dr. Natarajan went very well. She was a very good girl for her echocardiogram. In fact, she loves to having both of her hands holding onto the hand of the radiologist as she moves the probe around her chest. It is very cute, and luckily all the echo's up here have been like this so far. The results of the echo showed everything is flowing well in her heart, no problems at all. Her pediatrician appointment went well too. She cried for most of it, but Dr. Huang gave her a good once over and thinks she's doing great as well. She also helped prepare us for our big Neuro-cardiac program appointment next week. Basically, CHOP has a research program where they assess the neurological development of their cardiac patients, and then try to get those that are behind the right therapies they need. The program then follows them throughout the childhood. Our appointment is Feb. 20th starting at 8:30am. I was told to be prepared for a long day, 3 hours or so of assessment. It is possible they are figuring in a lot of time for her to be fussy and non-cooperative. Once all that is over then she'll have her EKG and echo at 1pm. It's going to be a fun day. As for the advice Olivia's pediatrician was basically - they are going to find a lot of little nit picky things wrong with her, but just go along with it and get her the therapies they suggest. The question I find myself answering a lot from various people I meet, and who inquire about Olivia, is "why are we still here?" (It is asked in nice way). The truth is we probably don't need to be here, the cardiologist seemed surprised we were staying in town so long. The problem is to go home it'll cost us $600 for the flight and $400 for the portable oxygen concentrator, to fly home and back for surgery and then home again is pretty expensive. Problem number 2 was the New Orleans hospital said her shunt was narrowing more and she would need surgery much sooner, or a catheter intervention, when we came up to CHOP they couldn't duplicate the findings. As we would wait in New Orleans with them thinking we need the surgery sooner but with CHOP saying to wait until March is a situation that could have gotten pretty dicey. Problem number 3 is we have to bring our own continuous pulse ox machine to the New Orleans hospital to monitor Olivia's saturations when she is in the hospital on oxygen. Problem number 4 our good friend Mia Marrone lost her battle with HLHS around 78 days, and then a baby at the New Orleans hospital, born 6 days before Olivia lost his life at around the same 78 days of life. Several other HLHS babies we knew kept having a lot of complications and were just stuck in limbo trying to get answers on what was wrong at the local hospital. When we flew Olivia up to CHOP she was about 78 days old. Our answer to all of these problems is that the lost wages, and the sadness of our family being apart is worth every time Olivia gets a day older and is still alive. Sure it would be easy to stay at home, work and be a happy family, but the what if's and the gravity of this entire situation will keep us up here through March and possibly 2 weeks after her surgery. So whenever someone asks, "why?" they get a very loaded answer.

8 comments:

  1. Glad to hear Olivia is doing well!

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  2. Michele Deck (emmie)February 15, 2012 at 9:36 AM

    Thanks for posting, Brett. We hang on every word that comes from you and Olivia. Everyone is praying hard for you and your family.

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  3. NCCP visits can be a long day, but very very worth it. Xavier was just there Monday for his 8 month visit. We got to CHOP at 9:00 and met with Hematology. We started our cardiology visit at 11 and we left at 4. My suggestion is to bring food for yourself. I had my husband there so he ran for lunch while I waited with X to meet with speech, but being alone you many not have time. NCCP was great in getting us a physical therapist who comes to the house and it is free!!! It is a great program to be involved in if you are able. Your all in our thoughts and prayers. HLHS and CHD families need to stick together!!

    <3 Jackie, Nate and Xavier Ross

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  4. I am glad to hear that Olivia is doing well. She is very cute. I think it is great that you can stay there as in many ways it must be a whole lot less stressful than coming and going, and can provide a little more confidence in the care for Olivia in the midst of the unknown future. You and Melanie are phenomenal parents. Cousin Kathryn

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  5. Love to hear great news. I am happy you are staying close to the hospital, best for everyone,

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  6. We love reading your blog and feel you are definitely at the right place now. I know it is hard and a lot for you and your family to
    endure, but it will be well worth it. We will all
    have a lot a catching up to do when you bring our beautiful baby Olivia home after her second surgery. Love to you two.

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  7. I completely understand your decision to stay up there until her next surgery and I would do the same. Not sure if you spoke to cardio, or the surgeon at CHNOLA, but I've heard a few parents say that the cardio told them their child needed intervention ASAP, or a different course than was originally planned and then they went to the surgeon who said that it wasn't the case. Anyhow, we go to Tulane and our one experience at the CHNOLA ER was terrible. We definitely have not needed our own pulse ox monitor at Tulane...that's nuts. Tulane has been awesome to us and saved Fi's life, not sure if you looked at them for interim care, but if you're unhappy at Children's I would look into it. Olivia and the whole family are always in our prayers. Hope that we'll be able to get the girls together sometime after her Glenn.

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  8. Mia never had care at Chnola. Her cardiac care took place at CHOP and her local care for other issues (GI related etc) took place at Ochsner. There is another HLHS baby, 16 months old, presently in Chnola who has had her life saved 3 separate times by them. There is another 6 year old HLHS'er that sees the cardiac team at Chnola and has successfully had all 3 surgeries. There is another 8 month old little boy receiving his care at Chnola. Chnola does have success stories, not to mention the fact that a surgeon is present in the CICU 24/7. Unfortunately CHD babies, particularly, HLHS have other anatomical issues. For the ones that I've seen lose their battle, it's typically not their heart that causes - just like with Mia. Glad to see Olivia is doing well and I hope that she continues to do well!

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Olivia loves to hear her mommy/daddy read your comments!