Tuesday, June 5, 2012

{ Echo, Ultrasound, Consults - Oh My! }

Our five-hour stretch of appointments at Children's was last Tuesday. I wish there was a spectacular reason for why I've taken so long to write about it; there isn't. I just haven't wanted to. Even though Elaina's hernia is mild {we're told}, it's not something you can explain or update in an easy, 30-second sound byte. And I think I'm indulging in just a wee bit of avoidance: I didn't even look at all the handouts they gave us until last night. After 10pm.

First of all, every single doctor was very, very positive about Elaina's current health and the probability of a really good outcome. Praise the Lord!! First we had a fetal echo, which was fun {for me} because I'd heard a lot of good things about the tech who did the test--she frequently teaches an ultrasound class at the university where I got my degree, and we know a lot of the same people. The second awesome thing was that the cardiologist who read the echo and consulted with us, Dr. Lewin, is someone I also know professionally, both from my internship and because he read a lot of the pediatric echoes we did at my old job. He is, hands down, my favorite pediatric cardiologist--there is no one I'd rather have assessing Lainie's heart. It was so sweet and unexpected of Jesus to give us a consult with Dr. Lewin!

Lainie's heart is shifted a little to the right, which is expected when there is a diaphragmatic hernia on the left. But it's not shifted much, and will probably move back on its own after the surgery. Even if it doesn't, that's not a concern at all; it will still function perfectly normally. The blood pressure in Lainie's left lung is elevated, which {again} is normal for hernia babies: There are more organs in the left side of her chest, so the pressure there is elevated, period. They will continue to monitor this before and after her birth...after surgery her left-sided pressures should gradually return to normal. There are lots of echoes in her future. Other than that, her cardiovascular system is A-OK.

Next was the fetal ultrasound, followed by consultations with a social worker, a neonatologist, and the chief of pediatric surgery. In summary, aside from the hernia, Lainie-bug is perfectly normal. The neonatologist stressed that she is doing absolutely great and, had we not "just happened" to have a late-pregnancy ultrasound, Lainie could have been safely born at any hospital...if for some crazy reason we don't make it to the university hospital and she is born elsewhere, they will be able to take care of her just fine 'til she's transported to Children's. The surgeon went even further: He said he has a feeling that if we hadn't found the hernia, Elaina is "one of those babies who might have some trouble feeding or breathing the first day or two, so they decide to do a chest x-ray, and then say, 'Huh. There's something in her chest that shouldn't be there. Better get that checked out.'"

At this point, this is what it sounds like the basic game plan will be--assuming that Elaina continues to do just fine in utero: She can be born...ahem...without surgery...in fact, they strongly prefer not to do a C-section, unless of course she gets much sicker between now and birth, or is in distress during labor. Most likely she will be intubated {breathing tube in her lungs} right away, unless by an act of God she comes out screaming, with oxygen saturations in the 90's, and clearly does not need respiratory assistance. {That is what I'm praying for!!} They will put a tube into her stomach to deflate it and keep it from filling with air {since it's pinched through a little hole in her diaphragm}. If she's doing well, we may be able to hold her. She will be in the NICU at the university hospital until she's stable enough to transfer to Children's, which is only a mile down the street. Of course, all of this is assuming there are no complications.

If I'm doing well--no C-section, no drugs, able to walk, etc.--I can be discharged as soon as six to eight hours after birth to join Lainie at Children's. The surgery will most likely take place when she is two to seven days old. Barring unforeseen circumstances, the operation takes about two hours, and the surgeon thinks the hole is small enough that they can stitch it shut, rather than using a patch. Lainie may be a candidate for a relatively new technique, where they operate sort of laparoscopically via cameras and three tiny holes in her side and back. {The main "advantage" would be cosmetic: just three tiny holes, rather than a scar on her chest/abdomen.} Regardless of which method they use, the success rate of the surgery in isolated cases {meaning when a diaphragmatic hernia is the baby's only problem} is 80-90%. Afterward, it generally takes a few days for the GI tract to start functioning normally--it's "stunned" by the surgery and doesn't start squeezing and moving things along right away. She will continue to get all her nutrition by IV {they call it TPN: Total Parenteral Nutrition} 'til things are working, and then they will start her on oral nourishment. Suffice it to say I will probably be an expert at pumping by that point!

Of course, there are still mountains of unknowns that simply can't be predicted 'til we are there. How much difficulty will she have breathing after the surgery? How long will she be intubated? How long will she be in the NICU? How much trouble will she have learning how to take oral feedings? {There are often significant feeding problems because the babies have never nursed or taken anything in by mouth, and now they are a week or more old.} Will she have reflux? Long-term feeding problems? How long will she need oxygen? Will she need a feeding tube?

All the doctors and staff were so incredibly helpful, even though all our conversations were peppered with caveats about "we won't know till she's here" and "assuming things don't change" and "if she continues to do as well as she is now." Nonetheless, it is pretty incredible that this is the smallest diaphragmatic hernia the neonatologist has ever seen...and that the surgeon's reaction when he saw the ultrasound images of the hernia was, "That's it? That's all I have to fix?"

The only thing that gave us pause is that the neonatologist wants to induce at 39 weeks. Apparently there's an increased risk of stillbirth when a baby has any type of congenital anomaly, so they don't like to let these babies go to term. Of course we didn't think to ask how much the risk increases, but that is on our list of questions for next week! I am really not a fan of induction, especially because this doctor is going with a due date five days earlier than the midwife...and without going into detail, I'm quite sure the later due date is more accurate. So, unless I can convince the neonatologist of the later due date, we are going to have to start thinking about induction a full 12 days before I think I'm actually due {due date moved up five days, then take away seven days to get to 39 weeks}. Distressing. Obviously we don't want to put Lainie at risk, but if she is still doing fine, we also don't want to take on unnecessary risk by trying to force labor when my body and baby aren't ready. Thankfully the doctor said that, if Lainie is doing good inside me {as evidenced by a nonstress test and/or ultrasound}, she is willing to give us a few days and "readdress the issue."

We have another ultrasound, neonatology and OB consultations, and a tour of the labor and delivery unit scheduled for next week at the university hospital. Since I will be about 36 weeks {depending on who you talk to}, I think they will have me start coming in weekly after that for nonstress tests and/or ultrasounds 'til Lainie is born.

Here are some specific ways you can pray for us:

~ for Elaina's continued health and growth...that no other problems will develop
~ that I will go into labor naturally, at a time that is acceptable to the doctors ;-) and that Lainie will tolerate labor and delivery well {no distress}
~ that Elaina will need minimal help breathing after she's born
~ successful surgery
~ fast, smooth recovery
~ easy transition to oral feeding and breastfeeding
~ no respiratory or digestive problems as a result of the hernia or the surgery

Whew...that was a lot. I'm going to take a break now and eat some chocolate ice cream. When I come back, I promise to tell you about our lovely little weekend on Vashon Island!


6 comments:

  1. Enjoy that ice-cream dear girl! Thanks for the specific ways to pray - we will be backing all 3 of you 100% in prayer. Loving this little one already and looking forward to hearing the story of her precious arrival :) xo

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  2. Continuing to pray for and think of you often. Glad to hear things are as positive as they are.

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  3. Praying and knowing God can take care of all your requests.

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  4. Stumbled on your blog and didn't want to be a stalker. Ha! Just wanted to say,"Love it!" You guys are super cute and I can't wait to hear all about your sweet one who's coming. Being a mom is the BEST thing ever!

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  5. Thank you for the detailed update, Nikki. We are praying for your precious baby girl. Fear of the unknown is the worst, but God is in control. It is good that you know all these things ahead of time, and can be prepared. I am praying that all goes well and you don't have to be induced!

    Sending love your way....

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