Tuesday, June 23, 2009
It has been a while since we have had the ultrasound, but it has also been a while since we have had the time to update.
The good news is that the fluid has not moved. This will be monitored everyday until the end of the pregnancy (or that is what was communicated to us). Since it seems that the contractions are able to be controlled the fluid is our main concern now that we are actually at the hospital.
The not so good news is that we will probably be here for the rest of the pregnancy. It's probably not so much bad news is that it is a bummer that Michelle can't enjoy some days in San Diego before delivery. However, if this is safer, it's better.
We will be visited tomorrow by our surgeon. We were able to get Dr. Saenz as our surgeon and he will be here tomorrow to give us a consult. Being a Harvard grad we at least feel like we're in good hands. At least the pieces of the information puzzle seem to be coming together. There seems to be a plan and a team ready to tackle Karsie's birth.
One doc down...two or three to go. The neonatologist (doctor responsible for the well-being of Karsie) just came in and sat down patiently with us to answer a ton of questions regarding the delivery and afterwards. We will list a bunch of things we can remember, but we were able to get a few more questions answered:
-Obviously the longer we go in the pregnancy the better. He did say that 31 weeks is definitely doable, but he did give us a realistic approach to that scenario. Basically the longer that we go now the shorter time she will be in ICU. If we delivered now she could be in past the end of September because she would need to be on a breathing tube, feeding tube, etc. waiting for everything to work.
-Getting Bob back into Karsie's stomach can be a balancing act. The biggest concern in breathing. If they just crammed everything back in, her lungs might not be able to hold all of that pressure since her stomach has not been growing with the organs (giving there less space inside for her soon-to-be organs. Therefore, when they put the organs in it pushes up the diaphragm and creates stress on the lungs. They will need to decide whether she can handle all of it going in at once or doing stages where they put some of Bob back in her abdomen and then wait a while for her to adjust.
-The other part of that balancing act is trying to time the surgery. While they will probably keep some of Bob outside after putting some in, they do not want to keep all of Bob out for a long time as there is an increased risk of infection. Unfortunately that's just a worry that will not be resolved until it's resolved.
-The most heartbreaking news we received was that it is very unlikely that Michelle will get to hold Karsie before she goes into surgery. Kevin will be following her to surgery while Reva (hopefully the doctors let us have more than one guest in the room) stays with Michelle. We wanted Michelle to be able to have skin on skin contact, but it looks like a picture might be all we get.
We are just about to go in to get an ultrasound to talk with our doctor so we should have news later, but the basic understanding here is that this is all adding up to be a complicated matter when we need to bring her into this world. This is not just an omphalocele to fix, it's not just prematurity to fix, it's not just fluid in the abdomen to fix, it's all of the above. An omphalocele is one thing when born on time because they can do things to help the breathing, but add on a premature birth with premature lungs and it creates more of a problem....and this is made an issue with the possibility that the fluid in her abdomen moves up close to her heart to create something called hydrops which is when the body is basically breaking down. If signs of that start to happen then we will have an emergency C-section.
Pray lots. Thank you for the ones we have had already! We love you all.
We are just doing quick monitors of Karsie and testing Michelle's blood sugar. So far Karsie has been fine. We are just about to do a contractions test, so fingers crossed.
Michelle's blood sugar has been quite high lately - every test today has been over the recommended range including one over 200. That is all the medicine and steroids pumped into her. It stinks that it is so high, but she's being monitored and balanced with insulin.
Time to see if she chickens out on sticking herself with a needle....
We have had a bit of a frustrating morning. We need to see our surgeon, but when we called their office (as they were supposed to call us) they told us they had not received the fax from our perinatologist's office giving them our charts and they were supposed to fax it over 2 weeks ago!! This means the earliest appointment we were able to get was July 28th. Hopefully we make it until then. We have some calls that are supposed to be returned today to see if we can speed this process up, but needless to say we are a bit frustrated as we don't want just some on-call surgeon fixing Karsie. We moved down for the best ones. So far we have seen no doctors today, but most of them make their rounds in the afternoon. Let's hope that we see some soon as we are a bit antsy.
FYI - she chickened out on the shot...maybe next time...
We just got finished talking with the nurses about our plan for the day. At this point we will be giving Karsie more monitoring to see how her stress level is. So far, she's a trooper. Very relaxed and happy. That's a good sign.
We will also be monitoring Michelle again for any signs of contractions. The nurses told us that even though Michelle has had some contractions they are not real worried because her cervix is still very long and thick (for those of you like Kevin that don't know what that means, for lack of better words it means Karsie is being blocked still by a strong barrier). We may get to be discharged if they die down or are able to stabilize the contractions with medication. Even if we are discharged we will have to make frequent visits to be monitored for the rest of the pregnancy.
Finally, we are waiting for doctors and surgeons to come talk to us about the fluid in the abdomen. Hopefully we will have them talk to us about that and do some more testing, but the nurses do not know their schedule, so it may just be a surprise drop in at some point during the day.
Michelle was a little high again on her blood sugar, which again is normal with the medication, so she had another shot :(. Everything else is status quo at this point. More to come when we hear.
Michelle's blood sugar was a little high for the first of the morning (due to the medicine to keep Karsie in) so she was given a shot of insulin. This was Michelle's first. She totally wimped out though on doing it herself the first time. (although Kevin could barely do the finger prick). At first the nurse said it wasn't high enough to call any doctor, but then the on call doctor here recommended the insulin to play it safe.
Talk about good karma after this!
Not much sleep last night. We were calm enough, but our neighbor seemed to have every machine go off multiple times during the night with frequent nurse visits that woke us up just enough to make it a little harder to go back to sleep. However, we both got a couple of hours in.
The nurse just came in and after an hour of monitoring Karsie and contractions everything looks good for now. Karsie has looked strong all night. We are not sure what is next, but we will get an update we're sure when the nurse shift changes.