Andrew, Day 63

Andrew is a little baby. Yes, he's very sick and still has a long climb, but each day we spend with him reminds us that he is a sweet little baby.We're suppose to have had another echo-cardiogram on Monday the 13th to see if there's still pressure and back-flow from his lunges to his heart. There's also a looming procedure; a cardiac catheterization, that may give us some better data on Andrew's heart and cardiovascular health.

Testing his heart

Andrew, and all babies with CDH, have pulmanary hypertension. It happens because there aren't enough developed blood vessels in the lungs to handle the blood flow from the heart. There is a little valve in the heart (ductus arteriosus) that is open in utero but closes soon after birth in normal babies. This closes to in order to get more blood flow to the lungs when it is needed after birth. When this ductus doesn't close, it is called a patent ductus arteriosus (PDA) and means that the blood is going to other areas of the body instead of to the lungs.

For Andrew, his lungs don't have enough blood vessels to handle the blood flow from the heart when the PDA is closed. When blood doesn't flow it puts pressure against the heart, this is pulmanary hypertension. So up until now doctors gave him a medication (PGE) that keep the ductus open and hopefully gave his lungs enough time to develop some more blood vessels and handle the full blood flow. Over the last month, they have tried 3 times to take him off the PGE and let the PDA close. He didn't tolerate it very well and the echocardiogram showed that there would be damage to the heart if it was closed. They took him off the PGE again on Saturday and he has shown no signs of decline in the last 48 hours. That is great.

He had an ECHO today and we are waiting to hear the results.

GREAT NEWS!

Andrew had his first bottle today!!!! When I arrived at the hospital the blessed event was already done, so I have no video or pictures. As for now they are going to give him one bottle a day and do the rest through the feeding tube. He did really really well on the bottle. They said he showed no sign of aversion to the oral stimulus. A lot of CDH babies struggle with bottle feeding and their mouths are hyper sensitive. The occupational therapist said he showed no sign of that at all.

So exciting!!! God has blessed this baby and blessed our family throughout this process. Thank you.

Andrew day 25

I showed up at the hospital today thrilled to find the docs removed his breathing tube. Andrew was put on oxygen via the nasal probes but he didn't tolerate it very well. (His heart rate and co2 was up) So after an hour or so of monitoring him they put him on cpap.

He has been happy all day with that. He is up to full feedings as well. Time to put some chub on this boy.

Andrew day 20

Andrew started the day with his vent pressure setting at 16. They had been coming down on the pressure 2 points each day since the beginning of the week. This morning they thought about taking him off the vent all together. Dr Keller advised that they put the pressure down to 10 and watch him for 24 hours. A pressure of 10 simulates what it will be like with no breathing tube but still assisted by an oxygen mask. He tried his best, but by this afternoon he was desaturating drastically and they put him back up to 16.

He finished up the evening with really good stats, sleeping soundly, on his belly.

The Pregnancy Rolls Along

Me at 24 weeks

Presenting

Andrew Brigham McQueen

18 weeks

22 weeks

24 weeks