Plan of Care

The conditions affecting my babies are sort of complicated and detailed. They require certain protocols and procedures at different increments of pregnancy. I’m so used to speaking this language that I forget not everyone else has this built in to their brains. I hope this explains the other questions that accompany the words Mono Mono, Encephalocele, and Meningocele.

Mono-amniotic: This means that the twins share both an exterior and interior membrane. This is the rare part of these twins.

Mono-chrionic: the babies share a placenta, this indicates they are identical and are not two separate fertilized eggs but instead one egg that was fertilized and later separated.

Encephalocele: a cyst like structure containing brain tissue and brain covering protruding through an opening in the skull, a type of neural tube defect

Meningocele: a protrusion of the meninges, the outer covering of the brain that does not affect brain function, in a sac like structure out of a small hole in the cranium (at least in Foster’s case, there are different kinds)

Procedure for mono mono twins is fairly detailed. I am probably missing steps and stages but this is as much as I can explain.

Mono mono twins are diagnosed via ultrasound early on in the first trimester. By 12 weeks gestation ultrasound is able to identify the lack of membrane separating the babies and confirm the condition. The dangers facing the babies are cord entanglement, cord compression, twin to twin transfusion, and other lesser conditions. This stage is fairly helpless medically because if something happens before the babies reach 23-25 weeks, there is little doctors can do to save the babies as they are not developed enough to live outside the womb. If their cords become fatally tangled during this stage the babies will most likely die or have serious brain and organ damage from lack of blood or too much blood. The mother will not be aware the babies are in danger. There is no indication, other than fetal movement, she will be able to feel that the babies are in distress.

Once the babies reach 23-25 weeks gestation, they are recommended to have fetal monitoring on a daily basis. This is done usually by monitoring their heart rates with non stress tests for 20-40 minutes. The normal heart rate range is 110-180 depending on the age of the babies (again, this is general stuff that I’ve picked up, not by any means a textbook to refer to). In most cases local patients can drive in to the hospital for this monitoring on a daily basis as recommended by their doctor. The chances of fetal demise go way down as the monitoring increases. We are talking a 50% decrease in fatality.

In my case they recommended an inpatient stay as it was too difficult to drive in on a daily basis. That would be 100 miles one way for a hour long test. If I stayed in the hospital the babies would have a greater chance of survival with monitoring three times a day and 24/7 care. Bed rest is also a great help. As my body moves less the babies gain all the nutrients and hopefully gain some extra weight to help them once they are born. I was given two doses of steroids at 24 weeks to ensure that the babies would have a head start on their lung function and capability. I received another set of these at 31 weeks gestation as well, simply extra protection. The magnesium sulfate was also given at 24 weeks that protects the tiny blood vessels in the brain from bursting due to the stress of premature birth.

I also received growth sonograms that detail the babies size every month. Their last sonogram a month ago measured 2 pounds and 12 ounces for Beckett and 2 pounds 14 ounces for Foster. After that point its possible for them to gain an ounce a day each. Im hoping for around 4 pound babies each! I would be tickled pink if they made that. It is a big accomplishment and head start for these guys.

I’ve gotten sonograms that also measure the blood flow of their middle cerebral artery in their brains. This can tell the doctors if the babies are getting an equal and healthy amount of blood. So far these have also had all positive and healthy results.

Foster had a MRI on his brain also. So they stuck me in the MRI and looked at my belly, specifically Foster’s brain structures. This is when the doctors officially diagnosed his meningocele, a huge improvement in prognosis over a encephalocele (because there was no brain tissue in it).

Delivery via c-section is recommended at 32 weeks by both maternal fetal specialists at the hospital I’m in. This is because in those last few weeks the twins really start to gain weight and grow in size. This puts an increased risk of entanglement in the balance. 32 weeks is a huge accomplishment. I can’t stress this enough. To make it this far and not have a emergency c section because of decreased heart rates is something to be celebrated. Once 32 weeks comes around, the babies have all that they need to live a healthy life with minimal complications in the NICU as they finish their growing process. Even this past week there have been increased drops in their heart tones. Each time the boys have pulled themselves out of it and relieved the pressure on their cords, but it has been clear that we may push our luck holding out for any longer. I’M SO PROUD OF MY STRONG LITTLE BOYS FOR MAKING IT THIS FAR!!!

My sweet Foster, has another battle awaiting him. Once the babies are born they will be taken to the NICU and stabilized. Stabilizing them could take a couple days or even a week. It all depends on how they do once they are born. After Foster is born, the pediatric neurosurgeon will evaluate him and decided on a surgery date. Hopefully that will be performed here in Wichita and we won’t have to be sent on to Kansas City. Dr G. is the only pediatric neurosurgeon in town and we are very lucky and hopeful that he can do this sort of procedure. Beyond that I really don’t know what will happen.

The NICU is a scary place for babies. Premature babies are at risks for all kinds of infections and complications because their tiny bodies aren’t quite ready for the stress yet. Parents and visitors are required to have specific vaccinations to protect the air surrounding these little ones. Hospital policy. There are babies as young as 22 weeks in this place. They are tiny and doing everything they can to fight for their lives. It is a quiet and dimmed environment meant to simulate the womb.

At this point the babies could be in the NICU for an addition two months till their original due date in December. It is all day to day progress when it comes to the NICU. I’m optimistic that it will be just as a worthwhile experience as 7 weeks in the hospital but the reality is much different. We will take one day at a time, and give our sweet boys the tools they need to grow into fully matured babies. We’ve got some fighters and all we can do is pray that God helps them through this next phase.

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