Monday, August 15, 2011

Learning a Bit More...

Today, Rose had another appointment with the high-risk obstetrician. After a 30-minute wait in the lobby, Rose was taken back for yet another ultrasound -- something we'll need to get used to, apparently, as they'll be necessary to monitor Jude's development and Rose's amniotic fluid levels.

There were no new major developments or discoveries today, but here's what we learned from the ultrasound:

  • Jude is a wiggly worm. He was incessantly flapping his arms and legs and wriggling about. (As I understand it, at one point in a baby's earliest stages of development, he has the same basic appearance as a chicken embryo/fetus. Judging from all his flapping, apparently no one told Jude that he's not a chicken.) His heightened level of activity would be amusing if it didn't make the ultrasound tech's job so difficult. Imaging his various parts, particularly his heart and a few other key areas, was tricky because he was moving so much. Despite his crazy chicken dance, our ultrasound tech was very patient and took the time necessary to check Jude out pretty thoroughly.
  • It does look like Jude has a ventricular septal defect (VSD). Luckily, this is a pretty common birth defect, and VSDs often close up on their own without any real problems. We'll probably learn more about this as we go along.
  • Jude's not only an active little boy, but he's also a pretty healthy size at this juncture. Drawing tentative conclusions from his measurements, it looks like he's in roughly the 67th percentile in terms of size, and is believed to currently weigh in at 1 pound, 5 ounces. This seems pretty encouraging -- that is, it's good that he seems to be showing healthy development. To be sure, Jude's safe and is "breathing" through Rose right now while he's in utero, but we nevertheless want him to be big and healthy (in as many ways as possible), and we want Rose to get to term, if possible, to afford him the most time in the womb for lung development.
  • We got our first "4D" imaging of Jude today during the ultrasound, which was something new for us, as we didn't opt for that kind of imaging during Rose's pregnancy with Annabelle. It was pretty cool to see some shots of Jude in three dimensions, although the little stinker kept blocking shots of his face with both his arms and his legs. At one point, it almost seemed like he was playing peekaboo: We would see a glimpse of his face, then he would cover it with his arms and hands. It brought a smile to our faces. :)
  • One bit of news that wasn't so great is that Rose's amniotic fluid levels may be on the rise: She's measuring 20 centimeters of fluid, and 24 centimeters is considered high; therefore, she's at a high-normal level right now. (Amniotic fluid levels can rise because, with the baby's esophagus crowded by the other organs in the chest, he isn't swallowing fluid and effectively managing its levels the way that babies normally do.) The risk associated with higher levels of fluid is that it can trigger pre-term labor, which is something we certainly don't want. Jude is already going to have lung problems when he's born, so we certainly don't them to be both poorly developed and immature because of a premature birth. If it's necessary, further amniocentesis can be done to drain off some amniotic fluid. The last thing I'm sure Rose wants is to have another long needle inserted into her stomach, so we're hoping amniocentesis won't be necessary.

After Rose's ultrasound was finished, we sat down with the perinatologist to discuss what lies ahead and to answer some basic questions we had. Here are a few things that came out of that conversation:

  • We're going to have a consultation with a neonatologist in the next few weeks. That discussion should hopefully give us some insight into where Rose will deliver and where Jude will spend his first weeks/months of life. Because the hospitals in Greenville don't offer extracorporeal membrane oxygenation (ECMO), a sophisticated form of life support that's similar to a heart-lung machine, Rose and I are thinking that MUSC in Charleston will be the place to go. While we know that there are gifted physicians and excellent facilities in Greenville, we want to ensure that we are in a place where Jude will have the specialists and care readily available to deal with the various contingencies that might arise. If, in the end, delivery in Greenville is an option, that would awesome; however, we don't know how likely that will be. One of our prayers is that God will work miraculous lung development in Jude in spite of his condition such that more involved forms of support may not be necessary. But, we'll have to wait and see how things work out.
  • In the coming weeks, we'll also meet with a pediatric heart specialist, which will hopefully give us more insight into Jude's condition and perhaps answer lingering questions that we may have at that point.
  • Because Rose's fluid amniotic fluid levels may be on the rise, she'll need to go back to the perinatologist every 7-10 days for monitoring. These visits will be in addition to any normal visits to her "regular" obstetrician who she was seeing exclusively before we learned about Jude's CDH. And, as indicated above, appointments with other specialists are coming down the pike as well. So begins the pattern of regular treks to the doctor's office...

One thing that has changed for Rose and me is that going to the doctor has gone from a relative non-experience in which there was typically either good news or no news to a bracing experience in which we're both rather nervous and additional details about what is or what is to come just seem to stir the pot of our anxieties and fears. Although we find ourselves doing a lot of hand wringing, we are certain that God is present and working in ways that as yet we may not fully appreciate or understand. And, to be sure, despite our myopic perspective on what's going on in our family's life right now, we have already seen the ways in which He is working, particularly through His church as its members reach out to us and love us in so many ways.

Among the many things we're thankful for today, here are but a few:

  • Unexpected blessings. Our perinatologist told us today that, if we ultimately go to MUSC for delivery and care, his office would arrange for free housing for us in Charleston. And we've had other such offers, too. Although we know that things might not always be so easy or simple, we're thankful today for how the Lord has been and is providing for present and future needs through unexpected blessings.
  • Prayers. So many people are going to bat for us on their knees, and we are extremely grateful that others are crying out to the Lord over our family's situation, particularly for Rose and Jude's health.
  • His church. In recent weeks, our pastor has preached on several Psalms that have spoken directly to the questions of who God is and how he makes himself known. Although many things have been clarified through this recent preaching His Word, one thing in particular has hit me (Brian) with particular force: The church is God's dwelling place, and he makes himself known through and among His people. Although the hardest days of coping with Jude's condition and what that will mean still lie ahead of us, our brothers and sisters in Christ have already begun reaching out to us. Through their words of encouragement, prayers, emails, hugs, meals, babysitting, and other forms of love and support, we feel the love of God as He's ministering to us through His people.

Although there are many verses through which God is presently revealing himself to us, this is one that is with me right now:

Behold, the eye of the LORD is on those who fear him,
on those who hope in his steadfast love,
that he may deliver their soul from death
and keep them alive in famine.
Our soul waits for the LORD;
he is our help and our shield.
For our heart is glad in him,
because we trust in his holy name.
Let your steadfast love, O LORD, be upon us,
even as we hope in you.
(Psalm 33:18-22)

1 comment:

  1. We know MUSC, and we have met quite a few heart doctors in Greenville and Charleston, so we're glad to be any help we can for you. We stayed at the Ronald McDonald House, and it was great. Ruby also had a VSD which was patched. Also there is are tons of programs and services you and Jude may be eligible for CRS ( and BabyNet because of his condition.

    I know this is so hard, but the Lord is so good.

    Annie Groover