Third Day.

First, I just want to thank everyone for their support.  Everyone has been really wonderful.

Yesterday was quite a roller coaster ride.  We started off the day with great news.  Logan had his umbilical line taken out which is great news, its much easier to handle him without it.  He is doing so good that they showed me how I can just take him out of his isolette whenever I want and he can be held as much as I want to hold.  Many of the other premie’s in the NICU have more restrictions so we are lucky right now.  He nursed again perfectly without any struggle, and one of the NICU nurses mentioned that if we can get him eating on his own he could possible come home in less than a week.  The nurses wanted to do his first ‘real’ feeding.  When he is nursing with me occasionally he isn’t getting what they consider a full meal because my milk hasn’t come in yet.  The wanted him to eat 3 oz. and he only ate 2.5 oz.  Because he didn’t eat his full amount they are leaving his IV in his hand to continue giving him extra nutrition.

They did an abdominal ultrasound to take a look at all his other organs.  They confirmed that he is missing a spleen and they saw no evidence of his intestines being mal-rotated which was a big concern with his condition.  The ultrasound isn’t conclusive about the intestines but it is a good sign.  Another good sign is that so far he is going to the bathroom well which means that food is making its way thru his intestines, so far.  So we were very happy with everything that we were hearing.  A nurse even said that is starts getting 3 oz. down on a regular basis that she could see him coming home in 3-5 days.  So we were on cloud 9.

Then we met the surgeon.  He even stated he was ‘the reality check’. He immediately started talking about a possible OHS (open heart surgery) that Logan may need next week.  We have been told so many times by our cardiologist that he is so optimistic that nothing will need to be done for the first couple months that hearing its a 50/50 chance of next week being the first one was not what we wanted to hear.  He was worried about the blood flow from coming out of the lungs has a degree of obstruction so blood get stuck in his lungs to long causing congestion. He started him on diretics to help flush fluid out of his lungs and another medicine that helps his heart work, so his single ventricle doesn’t have to work so hard all on its own.

I let this surgeon know what our cardiologist had said about there being good chance that Logan won’t need surgery right away and he got very defensive and “I am the one who decides if and when he needs surgery, not the cardiologist.”  My husband got very angry put his hands up and said “WHOA” and explained (firmly) that we are the ones that decide if and when Logan has surgery and we will being taking all the Dr.’s opinions into account.

Its very confusing because we see two different cardiologists in the NICU, a neo-natologist, an infectious disease dr., the surgeon, and multiple nurses and every single one of them has a different opinion on how he doing, what needs to be done, what his oxygen levels really mean, when he will come home, when he’ll need surgery ect…  It is very tiring and exhausting to weed and filter all the different information and emotionally exhausting to go from cloud nine to talking with a surgeon about breaking his chest open next week and putting a bands around his arteries.

He did remind us that in the next couple days when his lung pressures change we are going to find out how his heart is going to handle everything.  He said there is a possibility that things can go very bad very fast.  So we are now just watching and waiting.

I will try to post later, but am dying to get back over to the NICU.


3 thoughts on “Third Day.”

  1. Hang in there guys! I am very glad to hear that he is doing so well. However with that being said you never know with these kids. They can be totally fine one minute and the next head south in a hurry in just a matter of seconds. I know how very frustrating it can be listening to so many doctors but they all have the best of intentions at heart. Normally how our hospital team works is the cardiologist consults with the heart surgeon who then makes the final call when surgery needs to happen. It is hard hearing them mention surgery when all you want to do is hold your baby and take them home. Believe me they want you to get to take your baby home too.

    It all takes time so just enjoy the time you are having with your baby….remember on this journey you have to take it one step at a time….minute by minute. We have no control over any of this and we have to learn quickly to roll with the punches!

    Praying for your adorable little guy!!

  2. Try to hang in there…it can be incredibly confusing. I remember a cardiologist in the NICU saying we might be able to go home for Christmas (this was when she was maybe 5 days old – so we may have been able to take her home a few days after that). THEN, 2 days later, we are in consultation with the surgeons and another cardiologist and they start talking about OHS and putting her on the transplant list!! It was nuts. You will know quickly what’s real and what’s speculation…and trust your instincts. Let us know if you need anything. The 1in100 crew is pulling for you too. Not sure if you are on Facebook, but I noticed one the moms that posted had a really similar diagnosis if you want to Friend her. Hugs, Annamarie

  3. Kristen & Scott – Logan is such a beautiful baby – just like his parents! Just know that Jim and I are thinking of you. Kristen, give your Mom a hug and pinch Barry’s butt for me. Love, Julie & Jim

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