Doing Better Than Expected.



Logan had a really good week overall (except for Mon. ).   Monday he cried on and off all day and straight from 4:30 pm to 9:30 pm.  Here is a picture of him sweating from crying (and was is by no means the height of his crying).

His sad little face is heartbreaking.   He sometimes also sweats like this just from nursing (that’s why often I just give him a bottle because it takes less energy).  

Here is also a picture of his purple little feet (not taken while crying, while crying they turn navy blue)

His extremities get the least amount of oxygenated blood because his body is saving all the oxygen for the areas that really need it the most (brain and other organs) so his hands and feet are purple most of the time. 

Logan also had a cardiologist appointment on Thurs. 

His cardiologist thinks that his color actually looks better now that he is on the beta blocker.  It’s hard for me to tell since I see him every day.  Also he gained weight. Yeah.  He is now 9 lb. 4 oz.  (up from 8 lb. 13 oz.) so that is really good.  He didn’t sleep 22 hours a day like he did last week.  He is still sleepier  than a healthy baby but this week he actually woke up to eat.  Dr. Patel’s inital exam was so positive that he didn’t need to do an echocardiogram.  He said he really couldn’t believe that we are this far along and Logan hasn’t needed any medical interventions yet. 

It was by far the shortest appointment I have had with Logan at the Heart Center. 

Today Logan has an appointment with the General Surgeon that saw him when he was in the hospital with suspected intestinal problems.  Not quite sure what he whats to discuss but they called me to set up the appointment.  So I will post any news about that appointment later. 

In terms of typical baby stuff, Logan can hold his head up on his own now and loves to smile and coo.  When I walk up to him and say Hi Logan its Mommy he gets the biggest smile on his face. When he awake (which isn’t too often) he loves to watch the mobile on his swing and stare at the lights on our kitchen chandelier. 

Here is a picture of him getting some fresh air in our backyard.


7 thoughts on “Doing Better Than Expected.”

  1. Hi
    I have read all about Logan and just wanted to say thank you for sharing Logans story,we are from Ireland, i too have a child with heterotaxy (right atrial isomerism) she is now 2yrs old and doing amazing thank god,Abbey had BT shunt at 3days and her glenn at 10months, she has double double outlet right ventricle, ventricular septal defect, pulmonary atresia, asplenia,av discordance, mesocardia,midline liver and stomach on the wrong side, as with Logan there are very few children like Logan and Abbey, Abbey will have her fontan next year, Thank you again for sharing Logans story he is a beautiful little boy and a very inspiring one at that, brave little soldier, jacqui x

  2. Glad that his checkup went well. The pic of him crying is so sad. Poor baby!! My Logan was a blue baby just like your Logan. He was pretty blue for the first ten months of his life until he had his repair. I never really realized how blue he was until after the surgery and he was pink. It was kind of shocking to think that we get so used to seeing them as blue that we have no idea how non-normal that is.

    Hope your other appt goes well too!

  3. Awww…poor little guy. He looks so sad when he is crying. He sure is a cutie though…even when he is crying! Nice appointment…I wish I could have one that was short. Good luck with the appointment today.

  4. Hi, Im Heather’s sister. I love reading your posts. He is such a sweet little guy and such a trooper! I am so glad things have gone so well so far and I continue to pray for him! Love how you document everything and post pics! Keep up the good work. If only every baby was lucky enough to have a family like yours to nurture them!

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