Baby Update

I had another visit to Dallas Children’s Hospital, which included another fetal echo and a meeting with the cardiologist.  She explained the three surgeries to me again and what to expect once he’s born.  Here’s the summary of our initial time in the hospital, including the first surgery.

The left ventricle is still measuring too small.  This means that the right side of the heart is doing all of the work.  It means that the blood flow goes a different route than a normal heart.  Something they are keeping their eye on is the PDA hole, which is still open and looking good. The function of his right ventricle looks healthy. The valve on the right side of the heart is leaking a tiny bit, but at this rate, that is not a concern.  If this leak gets worse, he’ll have problems later.

Since we are having all of these additional ultrasounds and echoes to look at our little man's heart, I asked for a picture of his heart.  Here are two pictures.  One shows the whole heart and the second is the same picture circling the hypoplastic section of his heart.

At delivery, things should look similar to a normal birth.  Depending on what he looks like when he comes out, they will clean him and wrap him up next to my bed.  There is a possibility that I will be able to hold him at that point, but that all depends on how he looks when he is born.  If he is bluer than they expected, they will take him quicker. After that point, they will take him to the ICU and check him head to toe.  They will start the medicine PGE (Prostaglandin) to keep the PDA open in his heart.  This allows the oxygenated blood to get to his brain, kidneys, etc.  After the medicine is started and he is stable, he will ride in an ambulance to Children’s.

Once he is at Children’s, they will do another assessment, head to toe.  They will do a head ultrasound and a kidney ultrasound.  Problems with the brain and kidneys tend to go with heart problems, so they make sure that everything is looking good before surgery.  They will do several detailed echoes of his heart.  They do several so they make sure they can get all of the details possible.  After all of this, he will have his first surgery during the first week of his life.  They want him to be in the best condition possible for this surgery. 

After this surgery, they have us adhere to “sternal precautions”.  Since they cracked his chest open, we cannot pick him up under the armpits, like other babies.  We will do more of a scooping motion under his butt and back to pick him up. This is for 6-8 weeks after each surgery.  After the 6-8 weeks and the doctors feel like the bone is healed, we can pick him up under the armpits.

After they have his levels where they want, they begin to work on eating.  Something I didn’t realize is that he will not get his feeding tube until this point.  He will have an IV until the surgery (and a little after) that gives him nourishment.  When he gets his feeding tube, they will slowly drip in food to get his stomach and intestines used to having food. They will save my breast milk in the order that I pump so he is getting the first milk to the most current. When we get transferred to the 8^th floor, which is out of the ICU, a speech therapist will help him learn to eat.  How does that work, you ask? They use different kinds of support for his jaw, look for different cues on when he wants to eat vs. doesn’t want to eat, and they practice giving a little pressure on his tongue.  I will also be taught these methods so I will be able to feed him with a bottle. 

Before we go home, we’ll get a scale to weigh him daily, a pulse ox to check his oxygen, and a binder to keep everything written down.  We will also get the number of a nurse practitioner and doctor, who we can call 24/7 with any questions.

Once we’re home, we’ll have weekly cardiac visits.  We’ll have periodic echoes. What does being at home look like?  Will I ever be able to go out with him?  Most families stay home a lot during this time period.  There are the normal newborn precautions, plus some.  Wash hands; don’t let anyone who’s sick come over, etc.  Church is a big precaution because people like to touch babies and see them.  Put a blanket over the carrier and let people glance, but not touch.

Developmentally: any children who goes into the hospital, even if it’s just something like asthma, can have developmental delays.  He has several risk factors for developmental delays. The first is now, even in utero, his brain development is different because of the different circulation that his heart has.  Since the blood in his heart is routed differently, that causes different brain development.  Doctors have noticed that even before the first surgery, these babies have different development in their brains.  This puts him at risk for being behind in speech, being behind in motor skills, and typically being behind in math skills.  The good thing is that doctors know he is at risk, so they already have the right people lined up to help him developmentally.  Also, ADHD is sometimes associated with this.  With all of this said, there are still kids with HLHS who are completely normal.  He will have therapy from the very beginning.  He will have an OT (occupational therapist), PT (physical therapist), and speech therapist. He will have these people as long as he needs it.  After the second surgery, they can be much more aggressive with therapy if he needs it.

This is the gist of our first few months with our sweet little guy.  Feel free to email me if you have specific questions regarding anything.

-Carrie