To our dear family and friends,
First and foremost, thank you for continuing to lift us all up in prayer and providing support and encouragement. Your love has surrounded us as we have endeavored to seek out the next steps in how to advocate for Matthias and this has been a great blessing and gift to us. As many or most of you know, we recently flew to California to meet with medical professionals at UC Davis Children’s Hospital in Sacramento. A care team of potential doctors, specialists, and surgeons had been put together in advance of our visit based on what we currently know of Matthias’ condition. We were able to meet with this care team on March 2nd, and hear their thoughts and opinions on what some of the potential ways forward might look like. Daniel and I were utterly amazed at the intentionality and time that were given to us and completely overwhelmed by having an entire team of medical professionals not only affirm Matthias’ life, but willing to work with us amidst all the unique characteristics and physiology that make up Matthias. They all were in agreement that he is seen as an individual and not just a terminable diagnosis. We are grateful and praising the Lord for such a welcome reception and acceptance. We were also reassured that we will be a part of the team as we work towards giving Matthias the best quality of life he can have and seek out what is best for him.
So what are we doing from here one might ask? Well, in short, we are looking to transition to the Sacramento region as soon as we can reasonably work out the logistics as God has made it abundantly evident that UC Davis is the right place for us to deliver and care for Matthias. Ultimately, we are trying to target this relocation to happen by the end of March or beginning of April due to some additional complications that have arisen over the course of the last few weeks. Through the close monitoring that I have been having, it’s been identified that I have a condition called polyhydramnios. This means that my amniotic fluid has been steadily increasing beyond what’s considered normal ranges and could cause complications such as preterm labor or placenta abruption and can be indicative of other issues that Matthias might struggle with upon birth. If any of the complications begin to occur, I need to be within close proximity of the UC Davis Hospital, and to delay relocating to the region seems like it would only increase our risk factors.
As for Matthias, he still seems to be doing as well as he can be within the womb and continues to have a healthy heart beat. However, once he’s born we will learn so much more about him and get a better understanding of how he has been designed. His condition is severe and his hypoplastic left heart syndrome is one of the most difficult congenital heart diseases to encounter. He may be a candidate for a series of open heart surgeries, but at the very least we are hoping that he will be a candidate for a heart procedure that will allow us to have time with him. So far he doesn’t appear to be struggling with any pulmonary problems, but that could become a factor once he’s born, not only because of his heart condition but because of the history our girls have had with pulmonary hypertension. As I stated above, the polyhydramnios may also be affecting Thias and could be indicating that he may have some esophageal, digestive tract, or neurological issues. None of these potential problems will be fully confirmed or ruled out until after he is born, and some of them would require other kinds of surgery or procedures. The other risk factor that he will have to contend with is the possibility of his developing necrotizing enterocolitis depending on how well his body is able to oxygenate the blood and disperse it throughout the body, particularly to his organs. If this condition were to develop it would require more surgeries. The care team at UC Davis told us that all of these problems can be addressed. However, they do stack upon each other and begin to complicate the situation and as we endeavor to assist Matthias in one way it could also impact other areas of his body. We will need to continually be in communication with our specialized care team and constantly be reassessing what is in Matthias’ best interest being fully aware that it might not always be possible or right to proceed with intervention measures. Right now so much is dependent on Matthias being born at full term and having the ability to grow and develop within the womb as long as possible. He is already experiencing growth restriction, which is a symptom of Trisomy 18, but any intervention measures and his overall well being have the potential of more success the longer he can grow and develop.
This situation continues to be very fluid with much flexibility built in as what we plan for today could very rapidly change at any time. As the Lord leads and you think of us please pray for the following and/or if you have ways in which you might be able to assist with any of the current needs:
- We need to find housing in the Sacramento area as soon as possible preferably within a 30 minutes or less proximity to the hospital. Ideally, this housing would accommodate not only Daniel and I, but our two girls, as well as our dog. It would also seem likely that we would have at least one other person living with us off and on to act as a nanny for the girls.
- We need to pack essentials for this relocation and drive them from NM to CA. Please pray for the logistics of how this transition should take place and how each of us make it from point a to point b, whether it be through driving, flying, or a combination of both.
- Our timeline to leave would be by the end of the month at the latest as it feels imperative to get to CA to mitigate risk factors. As such, there is a fair amount of things to be done to close up our house, pack up what we think we will need, and have Daniel transitioning work. Please pray we will have clear decision making on how to work through each of these areas as we step out in faith in leaving what we know, but do not yet fully know where we are going. Obviously, we cannot delay our preparations even while we search out where to set up a new home base.
- Please pray that in our efforts to make this move happen I will not go into preterm labor or experience any complications, particularly not before we have fully transitioned. Ultimately we would desire, if the Lord in His mercy deems it so, that I will carry Matthias to full term.
- Please also pray that Matthias will continue to do well even with all the additional stress factors and that he will not develop any other complications himself.
Lastly, we are working towards setting up a website in which we can post updates in an attempt to keep people informed as our situation marches onward. We greatly appreciate each and every one of you who are walking alongside us during this most difficult and yet precious time in our lives. Please know that as we move forward we may not always have the bandwidth to respond or to acknowledge individually to the inquiries and checking in on us, but when you do contact us it is a great encouragement to us.
Love,
Beth, Daniel, Ioanna, and Briela
