This pregnancy has been a bit of a tough one the whole way through. Not one of those months-on-bedrest kind where you simply can't take care of yourself or your own kids, but an every-time-I-go-to-the-doctor-it's something-new kind.
First it was the morning sickness. I dealt with it, and was awful but fine, as long as I kept it in check and didn't lose weight like I did at first with Nora.
Then early in the second trimester, I developed some sort of weird UTI that wouldn't go away. After some in-depth lab cultures, it showed it was an uncommon bacteria that normally only grows on plants and is naturally antibiotic-resistant. The symptoms of a UTI can throw a pregnant women into pre-term labor fairly easily; but I was asymptomatic, and as long as I stayed that way, it was okay.
We also learned very early that the umbilical cord had 2 vessels instead of 3. This isn't an issue unless it is paired with slow fetal growth (it wasn't) or a genetic birth defect (it's not). So it was okay, as long the baby kept growing on track.
Just last Friday night, I started feeling nauseous and eventually began getting sick. Normally it wouldn't have been a huge cause for concern, but given that I am so close to the end of this pregnancy, it was enough to worry us and call the doctor. Even though it had passed completely by Sunday, we cancelled some weekend plans, and my mom came down on Saturday morning to help with Nora, as Ryan had to work all weekend. All along, though, we knew that as long as I didn't get dehydrated or add other symptoms to the mix, it wasn't a big deal.
We had been carrying on with life happily and planning for baby as usual, leaning on the "as long as..." part of the deal for most of the pregnancy, until yesterday, when we ran out of "it's okay as long as" statements.
On Monday morning, I had a regularly scheduled doctor's appointment with an ultrasound just to double check everything one more time. I had requested this knowing I wanted to attempt a VBAC and wanting to see what they were estimating the baby's size would be. We had no reason to believe they would find anything that was cause for concern, but upon looking at the baby's heart, the ultrasound tech wasn't able to see a good enough flow away from the baby's heart. Everything was still just a precaution (or at least that's what they told us, though we wonder now if they knew but couldn't confirm it without more information), as hearts are tough to see when the baby is that close to term and running out of room, but they wanted us to get a level 2 ultrasound and fetal echocardiogram. They pulled some strings and cashed in some favors to get us in at a nearby hospital the next day, even though normally it's swamped and you need an appointment for a fetal EKG weeks or months in advance.
We were worried, but okay - after all, it was still just a precaution. Little did we know that we were teetering on the edge of everything being fine and our entire world crashing down around us. On Tuesday, we showed up at our appointment. The ultrasound tech started and was talking us through everything she saw; everything was fine. She got to the heart and became quiet. She did speak up at one point and said "sorry - I'm just trying to get a good look at it," but even then we knew that something wasn't right. A few minutes later, she said she was going to get a doctor to look at the results because it looked like the blood that should be flowing to the left was going to the right, and vice versa. She left.
Ryan and I know enough about the heart as a result of his medical background and my experience as a young child with atrial septal defect to know that we had moved past "it's just a precaution." I started to cry while Ryan unsuccessfully tried to convince me that we needed to wait to panic. Three people came back to the room: a doctor, a nurse (we later learned she is the fetal care coordinator and the one they call when things like this happen), and the ultrasound tech. They handed out Kleenex and the doctor began to quietly and gently talk us through what they found.
Our baby has what is called transposition of the great arteries. Basically the aorta and pulmonary artery are switched, and where a normal heart would send oxygenated blood out to the body, our baby's heart will not do this effectively. They will give him or her as much time as possible to recover after the stress of birth, but within a week or so, the baby will require heart surgery to fix the issue by switching the arteries to the position they should be in and closing holes in the heart that normally close shortly after birth anyway.
They talked us through the very basics and told us to take an hour, have some lunch, and come back to meet with a pediatric cardiologist. They offered us meal tickets for the cafeteria but we both agreed we needed fresh air, so we left. We were both crying and in no shape to sit in a restaurant so we went through a drive thru and parked in an empty parking lot nearby. We cried awhile. I called my mom, who was at home with Nora, and we began the process of coming to terms with what this meant. We pulled ourselves together enough to make a list of initial questions we wanted to ask.
Originally our time at the hospital should have taken about an hour. Instead, aside from the hour we spent sitting in the parking lot, we spent nearly 7 hours there. After returning, we met again with the nurse, then with a pediatric cardiologist, a social worker, a neonatalogist, and finally we went upstairs for a tour of the NICU. We ended our day at the children's hospital on the same campus as the women's hospital and toured the pediatric ICU. We were (and still are) exhausted, overwhelmed, and devastated. We are grieving the loss of what we thought would be a happy birth and homecoming, and attempting to come to terms with the idea of our baby instead enduring a difficult open heart surgery just days after his or her birth. We are worried about what this will mean for Nora, who has no idea what is coming and is so excited for her new role as a big sister. She has been my little shadow for three and a half years now, and at least for the time that we will have to be away with the baby most of the time, it will be a major change for her.
Among it all, though, we realize how much we have to be grateful for. Already we have seen the amazing support of our family and friends, who are offering babysitting, meals, lawn-mowing, and so much more. We are feeling the calming effects of so many people praying for us and offering support, some of whom we have never even met. We are realizing that my getting sick last Friday night was a blessing in disguise, for otherwise my mom would not have been here to help us with Nora. We are grateful that the staff we met with at the hospital was willing to meet with us on very little notice, with hardly any time to look through our paperwork and prepare. And, as much as we hate the facts of it, we are grateful to know this information now, so we can prepare ourselves and our families. Had we not known about the defect in advance, as most do not, I would have delivered the baby 20 miles away in a hospital that was not equipped to handle a newborn requiring this level of care. The baby would have been transferred, leaving me to recover in a completely different hospital while Ryan went with the baby.
We are making progress. We are to a point where we can talk about what is coming without breaking down (at least most of the time), and though we still get upset and cry from time to time, we don't feel like we are living in a haze like we were earlier this week. It is difficult knowing what is coming, and knowing that the worst is yet to come. But even in our darkest moments when we are imagining what it will be like to have to leave the baby at the hospital to be cared for by someone else or to have the baby whisked away immediately rather than placed in our arms to snuggle and meet for the first time, we are focusing on the fact that the long-term outlook for babies with this particular defect is incredibly positive and they can often live with little or even no restrictions once they have healed.
If you are one of the many, MANY people who has already offered support, kind words, advice (for we have already spoken with a few parents who had a baby born with TGA), meals, help with Nora, and so much more, thank you. We are so grateful for you and you are keeping us afloat as we prepare for this journey.
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