August 29th, 2007 at 2:15 pm
(CDH)
The perinatologist never called me back. I called him last week with a question, spoke to a nurse and they never called back. So we took matters into our own hands. We have had two meetings this week, the first with a neonatologist at St. Johns. This may not be the babies doctor as they rotate through and whom ever is on duty the day she arrives will likely become her doctor but he did sit down and talk to us about what to expect and he answered our questions. We have some of our answers. We then sat down with our pediatrician, Dr. MB, she also discussed what to expect. She has first hand knowledge of Diaphragmatic Hernia since she performed her residency in a NICU and worked with three CDH babies. She was also able to answer some of our questions and reaffirmed the things that the neonatologist said. We now know that we can stay at St. Johns if we want to, but both of them recommended at least touring the NICU at Children’s and speaking to one of their neonatologists just so we can make informed choices. As Dr. MB put it, its nice to be in a city where we have these kinds of choices rather than one that does not have an options for medical care. We want to stay at St. Johns if at all possible. With the exception of the perinatologists everyone else has been excellent. We will see…
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August 22nd, 2007 at 11:46 am
(CDH)
Expecting something and accepting it are two different things. For example, when your expecting a doctor to give you bad news that you already know and just need confirmed… it does not mean you are prepared to accept that news. We were told on Monday that the babies chances are poor. When things started, she had very little in her chest that did not belong there. Now, most of the left side of her chest is occupied and her heart is taking up space in the right side. If there is lung on the left side, it isn’t much. The right side has lung but it has gotten compressed. We knew most of this already from two other doctors. Our doctor has been behind the curve on most things that have gone on. He has kept an eye on preventing premature birth. We have not had a premature birth, at least not yet, so he has done his job. He hasn’t been so impressive in other areas.
I keep feeling like no one is paying any attention to the big picture here. Our obstetrician doesn’t seem to be interested, our perinatologist isn’t doing such a hot job. One of our perinatologists colleagues couldn’t get out of the room fast enough when did the previous ultrasound, the one who told us, “There’s alot of stuff up there”. I suspect if I had not asked, he would have run from the room and said nothing. The cardiologist has been great though and one of the other perinatologists in the office was great too but we have only seen her once. We probably should have switched to her after we met her and had we known what we know now we would have. We still have not met the neonatologists.
I spoke to the NICU at Children’s yesterday and had a few questions answered. If things are as bad as they appear to be, as our cardiologist pointed out, ECMO will probably be needed. Children’s is one of the two hospitals in town with ECMO and Barnes-Jewish is the hospital right next to it. Daphne should be just finishing up an appointment with our obstetrician as I write this and she is asking her a simple question, Why should we not go to Barnes at this point?. It will be more of a drive and inconvenience for us but if it puts the baby a few minutes closer to the equipment she may need to survive then we can put up with inconvenience. Depending on the answer, and I suspect there is no reason to not go to Barnes, she is going to ask for a referral over there.
She also called our pediatrician yesterday. Our pediatrican has worked with CDH babies while she was at a hospital on the other side of the state. We are going to meet with her next week. When Douglas was born she came in and helped us when the hospital was not doing a very good job of keeping us informed. We are hoping she can help again.
I also spoke to one of our perinatologists nurses yesterday with a simple question of, if her prognosis at St. Johns is poor, when were would it be better? Who is the hands down expert at dealing with Congenative Diaphragmatic Hernia and where can we find that person? I am still waiting for that reply. We are running out of time…
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August 17th, 2007 at 11:32 am
(CDH)
We learned yesterday that many of the reports from the other doctors are not reaching our perinatologist. We asked some hard questions yesterday and did not get the answers we were looking for because our doctor did not have any of the data. He is going to set up a meeting with all involved parties so we can sit down, pull all the information together and discuss where things are heading and make at least a cursory plan of action. We will be going to see him on Monday for an ultrasound and may have more information after that now that he knows what we want to know.
They are hard questions because, lets face it, no one wants to hear things are bad and there is nothing you can do about it. We want fixes for the bad things. Unfortunately we need to hear the bad things so we can make decisions that may affect the baby’s care once she is born. No surprises.
We had our tour of the birthing floor yesterday with a very nice lady who took time out of her day to give us a private tour so we did not have to return to the hospital after 7 or 8 pm for one of the scheduled tours. We spend so much time there we couldn’t bring ourselves to go back again. We learned what we needed to learn to find the place and check in. We were told a few other tips and tricks to making things run smoother when we are there. We missed out on these things last time around due to the circumstances of Doug’s birth. We have a better sense of things. Again, no surprises. We don’t need any more surprises.
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August 14th, 2007 at 9:59 am
(CDH)
We met with Dr. G. (Cardiologist) for the second time. Once again her heart looks good. I almost got the impression that her heart is looking better than the doctor expected. This news comes with a “however”. However, her heart is definitely all the way on the right side of her chest. Dr. G. told us (as a clarification from the “not much room in her chest” statement from the last post) that her stomach, some intestines and what may be part of her spleen are in her upper chest. He always speaks to us as if he is telling us things we should already know. We will be discussing this concept with our perinatologist later this week. Why are we getting most of our news on the condition of this baby from the doctor who is suppose to be specializing on her heart. We have been feeling like we were in the dark on many things, we tried to ask at the last appointment with Dr. B, but the fire alarm went off cutting our visit short.
Dr. G. is the first doctor who, I feel, has taken a real interest in the condition of our baby. He has spent more time explaining things to us than anyone else, things that someone else should have explained to us before we went to see him. From what he saw, he is of the opinion that ECMO may be in our future. He told us that with all things dealing with Congenital Diaphragmatic Hernia there is no way to predict how a baby is going to fair. Babies who are expected to do well, don’t always do well, and babies who are expected to not make it, do. Dr. G. said he is going to contact the doctors who handle ECMO at Cardinal Glennon and/or Children’s and he will get back with us later. We go to see him again in September.
We are now approaching week 32, this is the 8 weeks out mark and the point where Doug showed up. We need to see week 36 or later, thus far there are no signs that we will not make this mark. Thus we carry on…
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August 3rd, 2007 at 3:19 pm
(CDH)
Nothing much to report, the ultrasound looked as good as it can look. We are seeing that she does not have all that much space in her chest for those lungs to do their thing. It seemed like there was more room earlier on and as things grow we are seeing less and less space for lung development. That being said, she was being less than cooperative this time around making it difficult to see much of anything. She seemed to feel that her right side was her good side for photos and that is about all she would show us. We learned that, while the heart doesn’t much care where it is in the chest, the blood vessels leading to the heart do care as they can get stretched out and kink opening up the chance of heart failure when the blood flow gets blocked up.
We had a tour of the NICU, I realized that had I never had to step into a NIC Unit again it would have been fine by me. We will be passing through those doors many more times before this is finished.
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