Assessments

RESPIRATORY SUPPORT
After Verity was born, of course the next thing to determine was what exactly her immediate needs were and what could be determined about her future needs. Clearly she had to have respiratory support, but we were thrilled when the CPAP and mask were removed within the first 24 hours and she moved to room oxygen through a nasal cannula. Even more astonishing was seeing her come off oxygen altogether on Day 5 and having her do so well; we are now on Day 6 and she hasn't had to go back on it!

Apnea is a huge issue with Trisomy babies. I asked the doctor about an apnea study, and she said they rarely do actual studies, but the monitors themselves are apnea studies--and nothing in all of Verity's monitoring has indicated any problems with apnea. I am encouraged every time I look at her monitors and see such regularity--perfect little heartbeat, high oxygen sats, rhythmic breathing...this changes when she's mad, lol, but even hearing her lusty cries makes me smile instead of panic. The nurses all know when Verity needs attention!!

FEEDINGS
Next: feedings. We figured she would need help eating, as almost all Trisomy babies do. She got an IV right away, followed by gavage feedings (through a tube, first in her mouth and later through her nostril--she did NOT like THAT process!). We were given a bottle of donor milk for her use, but after that was finished (a few days in), we did have to start using formula to supplement my own supply. But thankfully it shouldn't take too long before she is solely getting her nourishment from my breastmilk. The IV supplements stopped on day 2, and as with the oxygen, she didn't go back! Feeding amounts have steadily increased, and she has tolerated it all very well. She has no problems eliminating and really, really hates pooping and being in a dirty diaper! She lets us know when she's having a BM and clearly expects us to do something about it!

The last couple of days we have seen her respond to the breast, enough that my nurse today would really like to help us move toward breastfeeding first with gavage feedings afterward. I am hopeful but find it hard to be as optimistic as she is...still, Verity has defied all kinds of odds so far, so who knows?! She has latched and sucked several times during several different attempts, so while we haven't had any sustained suck-and-swallow action, all indicators are there that she CAN do this. (And for the record, she loves sucking on a pacifier!)

We have not done an official swallow evaluation; things look good, but I plan to ask if there are other more official things we can do in this area to give us the best possible chance of successful feedings.

BRAIN SCAN
We had requested in our birth plan to have a brain scan done, and that was in fact accomplished right away. Everything looked fantastic!

HEART ISSUES
We had also requested an echocardiogram, even though careful examination of her heart during the prime viewing period of my pregnancy indicated that she had no heart issues. It wasn't terribly surprising but was still rather discouraging to learn that there are, in fact, heart issues. Verity has 3 VSDs, basically 3 holes in her heart. Two of them are small and may very well resolve on their own; they are not concerning. The third, however, will require surgery before she turns one year old. This is very, very common for our Trisomy babies, and the fact that Verity has already proven to be a strong, healthy little girl bodes well for her surviving surgery. We were extremely encouraged when her heart did not show signs of distress when her oxygen was removed. While surgery isn't something in the immediate future, it could very well be a procedure that needs to happen before the military moves us in July. We would appreciate prayers for guidance in this area and that we get matched with the right team of specialists. We will be meeting with cardiologists tomorrow; so far we have only discussed this with Verity's NICU doctor (whom I absolutely ADORE) and the geneticist.

GENETICS
All of Verity's positive (and fast) progress is making us wonder if perhaps the amnio results gave us an incorrect diagnosis: perhaps, instead of full Trisomy 18, Verity may actually be partial or mosaic Trisomy 18. It is worth investigating, and if our insurance would pay for it, we would like to have her tested simply because it would help us adjust our expectations and allow us to do more research and investigating since we have focused our efforts on learning about FT18 and haven't read as much about PT18 or mosaic. Here are the differences according to www.Trisomy18.org:

Types of Trisomy 18:

• Full Trisomy 18: The most common type of Trisomy 18 (occurring in about 95% of all cases) is full Trisomy. With full Trisomy, the extra chromosome occurs in every cell in the baby’s body. This type of trisomy is not hereditary. It is not due to anything the parents did or did not do—either before or during pregnancy.
• Partial Trisomy 18: Partial trisomies are very rare.  They occur when only part of an extra chromosome is present. Some partial Trisomy 18 syndromes may be caused by hereditary factors. Very rarely, a piece of chromosome 18 becomes attached to another chromosome before or after conception. Affected people have two copies of chromosome 18, plus a “partial” piece of extra material from chromosome 18.
• Mosaic Trisomy 18: Mosaic trisomy is also very rare. It occurs when the extra chromosome is present in some (but not all) of the cells of the body.  Like full Trisomy 18, mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division.

Regardless of whether Verity has full, partial, or mosaic Trisomy 18, as you can tell, we are all pretty smitten!! We love that so many people around the world are praying for Verity. I hope you will do some searching to find other Trisomy families and read about their stories as well. Many of them have become friends of ours during this journey, and I am in awe of each precious life as well as the support and love shown through parents, siblings, and the villages rallying around these precious gifts.