Matthias Skaggs

First off, we want to apologize for the inability to update this website like we thought we would be able to. We will do several post hopefully soon to chronicle some of the things that have taken place over the past month.

Matthias had a due date of 28 May and we were told it was highly unlikely for him to make it to full term and would most likely come early. In God’s good providence this did not happen and he ended up arriving 12 days past the due date. As hard as it was to wait, and the difficulties Beth had to endure, this was the best outcome for Matthias. Even with Matthias being 12 days late due to his Trisomy 18 condition he was still only 4lbs 11oz when he arrived on June 9th at 0457 AM. He was 16.5 inches long. There was a large team of people awaiting his arrival with people and equipment lining the hallways awaiting to be brought in the delivery room if needed. Although it took roughly 10 or so of the more than 20 people standing by to help. They were able to stabilize him quite rapidly and it took quite minimal medical intervention. His heart was beating strong (even though it is only half developed) and his biggest issues were his airway. They were able to get a clear airway without intubation and were able to get him stable with a CPAP/BiPAP. This was better than some of the best scenarios we were told ahead of time. This was truly a mercy of the Lord to allow Beth to give birth to Matthias naturally without having to have a C-section so she would have the ability to see Thias as soon as possible after birth. Within 45 minutes we were on our way to the NICU and they were running a long list of tests to see if any major interventions were needed within hours of delivery. One such intervention that was expected to be performed was a procedure to enlarge a hole in his heart to allow for proper mixing of the red/blue blood. This was determined through imagining and careful monitoring of his oxygen saturation and pressures. This was an intervention that was not necessary within the first couple of hours. Again, another huge answer to prayer as this would have been very hard on his system so soon after birth. His survival for this would have been much more tenuous.

Within the coming hours and days we learned more clearly the different system that are affected by his trisomy-18 chromosome extra copy. There are some neurological systems that might be causing apnea episodes, which can cause him to hold his breath and stop breathing for longer durations of time. There are potential obstructions based on his jaw and mouth structure (due to T-18) which can make his airway more closed off depending on what position he is in. He has some issues with one of his kidneys and there is a malrotation in his gut which could heavily affect gut function if it is causing a partial or complete blockage. He has some underdeveloped nerve/tendons function in one of his eyes which make it difficult to close one eye fully. All in all he has many less drastic affects than we thought was going to take place. His heart condition is still extremely severe and it is a very difficult balance of not overtaxing the heart and ensuring his lungs are not getting too much pressure from excess fluid volume to the lungs. There also is a need to ensure the brain and the gut still maintain enough oxygenated blood to perform optimally. This gives our medical team a difficult task, but they are taking every system into account and carefully performing the care needed. We want to reiterate that this initial knowledge of his systems that are affected by this genetic abnormality will not be all the things he will be affected over time. We will learn more as time goes on and will have to adjust his care as needed. We are so grateful that the Lord saw fit to give him life to allow us to care for him with the best care we could find.

He is precious and such a wonderful cuddler. You can’t imagine the joy we have to touch him, hold him as his stability allows, and share about who he is. He has a very gentle disposition and has wonderful eyes that look deep into your eyes while he seeks out your hand to hold. He is our son and we are greatly blessed. What a wonderful Creator we serve that sees fit to bless us with every child to have and to hold to proclaim His glory and shower us with blessings we couldn’t even imagine.

We want to acknowledge some of the many things that Thias doesn’t have or things we can do we never thought would be possible. He doesn’t have a full blockage of his airway requiring significant intervention, he doesn’t have a full blockage making his kidney functions completely impossible without surgery, his gut could have perforations, or many blockages, his brain function could be preventing many different vital bodily functions. He could’ve had a lack or too many fingers or toes, he could have been suffering from severe seizures right from the beginning, his lungs could’ve been damaged, under developed, or suffer from over pressure in the early hours of life. All these things and countless more possibilities were not our reality. We can actually be next to his bed talking with him. He has the ability to be moved and held even if it is with much effort. We can kiss him, touch him, and we can talk and be heard. He can see us and hold onto our hands. All these were potentially not possible. Yet, here we stand amazed.

Please know that we are immeasurably touched by the thousands who have been praying on our behalf. You do not know the strength and courage that knowing we are praying as a corporate body of believers to a sovereign King. One who has looked on us, who don’t deserve such gifts, and saw fit to bless us with such a wonderful gift. Even if we would’ve gotten a few precious moments with Matthias or just got to hold him or tell him we loved him that would’ve have been more than enough, but here we are weeks later praising our Savior that he is alive and stable. Every moment will be cherished. May the Lord richly bless each and every one of you.

Blessings from the Skaggs family of five!

Our last update left us waiting to move in to our rental house on April 1st and looking forward to celebrating Easter.  We had a very nice holiday with family and did attempt to get settled into our new housing on April 1st. What a journey we have been on, and one that has certainly not gone quite according to plan! 

When April 1st arrived we were given instructions that we could not access the home until 4:00pm and so we expectantly waited to gain entry, but had the fun and wonderfully exciting distraction of watching the Artemis crew launch and begin their mission to circle around the moon. We then entered the rental and began our own mission to empty the U-Haul trailer and get it returned without accruing additional expense for it being later in the day. We were pleasantly surprised to find the home, although small, would comfortably house us space wise, but were a bit taken aback by an unpleasant odor and what seemed to be a not satisfactory cleaned or furnished home. In the moment, we were focused on unloading our belongings with the help of Daniel’s dad and getting the trailer returned, and didn’t give much thought to unpacking any further. We had decided we would unpack and fully move in after Easter so we could enjoy time with family and celebrating the resurrection of Jesus, especially as we have not had the opportunity to spend any holidays with family throughout our marriage thus far. 

After unloading, we returned back to Daniel’s parents’ and continued on a few more days. Then the Monday after Easter we trekked back to the Sacramento area and began considering what should be done about the housing we had secured. We knew we wanted to clean more thoroughly before unpacking our belongings and had picked up some cleaning supplies to assist us in our endeavor. We quickly discovered that the home was more unclean than we realized and was going to take quite a bit of work before we would be comfortable settling in. Unfortunately, the more we tried to make it better the more profoundly we realized that this might not be a good home for us as it also had a carpet beetle problem (EEEK!), which we hadn’t noticed until we began more thoroughly cleaning. At this point, we asked the landlords to please terminate our lease agreement as we could not wait out the time it would take to effectively correct the problems as our reasons for relocation were for the medical needs of our unborn child and we needed to be more settled before he would make his entrance into the world. We quickly made the decision to promptly move all of our belongings out of the house, rented another trailer to move everything to Daniel’s parents’ property with the assistance of our brother-in-law, and fully vacate the rental premises as soon as possible. Irony upon irony, U-Haul was simultaneously experiencing an entire system outage across the entire United States and could not rent or receive returns the day we were trying to move out before we even fully moved in. So finding a  trailer to rent proved to be a somewhat difficult task even though we were in the city. This impromptu decision was extremely stressful and fraught with much anxiety, but the Lord in His mercy, did allow for the lease agreement to be terminated without us being held liable to pay the remaining rent for two more months of accommodations. 

The Lord also continued to provide for us through Daniel’s parents. They have very graciously allowed us to live in their “Cottage” located on their property and we began the arduous process of cleaning all of our belongings in an attempt to then settle in a little more permanently. Up to this point, we were only considering the Cottage as a stopover and not where we might be setting up house long term. Although, we have yet to finish the task completely of cleaning all of our things, we are beginning to feel a bit more settled, gaining a bit more normalcy and routine, and Daniel can work more regularly albeit remotely. The transitionary period of where we would land took a toll on all of us and we are grateful to be finding our footing again and getting back to a schedule that is helping all of us sleep better and breathe a little easier. We are still unsure of what to do about being closer to Sacramento as finding another rental feels quite intimidating as well as moving the family yet again in such a short period of time. We are praying the Lord will give very clear direction of what we should do and where we should be as it does feel like we are running out of time to make any significant shifts before Matthias’ arrival. 

During the tumult of moving, we were given great news while we were getting fully established with UC Davis officially as patients. We had some follow up appointments that included consultations, a fetal echocardiogram, and ultrasounds. Not much has changed with what we know about Matthias, but we were surprised to received the news that my diagnosis of polyhydramnios has fully resolved and my amniotic fluid is back in normal ranges! I was by no means anticipating such a report and am thankful that my own status of high risk is now minimized. This news has allowed us to breathe a little easier and gives us much hope that we can indeed carry Matthias to term. At this point, I am 35 weeks and counting. Lord willing, Matthias will stay put for another 4-5 weeks giving him the utmost time in the womb for growth and development. 

In the meantime, we continue to enjoy spring, relishing in spring rains, chorusing frogs, beautiful temps that allow us to splash or “swim” as Ioanna thinks of it in the creek, new life of baby cows, sheep, and goats around the countryside, and a family of geese with two little goslings that keep visiting the bank behind the Cottage. The girls and I can’t get enough of being outside playing in the yard and soaking in the sunshine. It has been a fun time of exploration and discover, wondering why flowers aren’t always open when its not as sunny or the day has turned to dusk, and exclamations of “The sky is broken!” when its steadily raining, and having some of their first experience with worms and grasshoppers. A true highlight was showing the girls the lemon tree in the backyard laden with fruit, gloriously yellow, just waiting to be picked. Of course, we acquiesced and filled two brown paper bags with the citrus, and then proceeded to make old fashioned, fresh squeezed lemonade. What a treat!  

We will continue to contemplate how we should address our housing situation and whether or not we should attempt closer accommodations. We have been shifting our thoughts towards welcoming Matthias into this world and figure packing a hospital bag is probably a good idea. We will also have the pleasure of celebrating some family birthdays within the next week, experience the small town festivities of “Homecoming” in Daniel’s hometown, and express our love and gratitude to the mothers in our lives. As much as we have felt displaced, unsettled, and unsure this last month we have also been given times that are extremely special if we allow ourselves to be in the moment together with eyes willing to look for the blessings and gifts being bestowed. We are continuously astounded by the encouragement and love that has lavishly been given to our family and we want to be sure to say how much we appreciate each of you! Your thoughtfulness towards us has been a way in which God’s faithfulness has been shown in our lives as it encourages us to press on and stay the course. Surely, we have known your love as you assist us in carrying our burdens and encouraging us when we are faint hearted.

What a whirlwind of life seems to have taken place during the course of 3 ½ weeks.  We certainly felt like we hit the ground running once we returned from CA from our consultations, and yet, felt completely unsure of what the next steps should be and how to go about moving forward. We decided the only way to make progress would be to once again step out in faith and put the next foot forward even though we did not have in mind what all exactly we were trying to accomplish. God had clearly said we were to “Go!” and we were confident that with such a clear instruction He would show us how. 

We began trying to determine what we should bring and immediately began house hunting as one of our biggest needs would be where to live.  We had been given parameters from the hospital that ideally, we should try to find a place to stay within a 20 minute radius of the hospital with the idea that we do not know at what point we will need to be able to access the facilities quickly and that we should aim to be relocated between 32-34 weeks (arriving sooner would also be acceptable if we could manage it). Having been diagnosed with the polyhydramnios condition, Matthias’ condition, and my history of precipitous labor the hospital strongly advised that being closer than further away would be in our best interest. We were unsure if we would be able to find accommodations that would meet the hospital’s suggestions as well as take on a family of four and a dog. The Lord opened the way and after a week and a half of searching we secured a duplex rental that met the criteria we were aiming for. We will be able to move in April 1^st!

The next hurdle was trying to figure out what we wanted for our belongings to come with us and at first that was hard to wrap our minds around, especially as we didn’t know whether the housing we would find would be furnished or not. Thankfully, the rental does come furnished and we didn’t have to pack up as much of our home as we initially thought we might. We also needed to determine what we wanted to aim for as far as a targeted departure date. We concluded that the quicker we could relocate to CA the better as we thought the longer we waited the harder it might be to make the transition happen. We also desired that we might be able to not only relocate but possibly have some time to get acquainted with the area and begin to feel a little settled and reestablished before we went into the next realm of unknowns. With that in mind, we picked March 27^th as our target day of departure.

The Lord was very gracious as we were able to meet our deadline! We felt like it was a very daunting task trying to pack up our life as we have known it, find housing, determine the best way to relocate our family and stuff to another state, transition Daniel’s work, and close up our house all within a 3 ½ week time period. Yet, it all happened!  We are grateful for all the people that came alongside us to help us in our endeavors and made it possible for us to meet our goal. We are humbled by the amount of generosity, time, care, and effort people have given to make it possible for us to make it to California in such a timely manner. People blessed with us meals, borrowing vehicles, babysitting, cleaning, packing, loading, driving (even to where they sat for hours waiting on the side of the road for a flat tire to be changed), and financially. Words cannot express the intensity of our thankfulness for each and every one who made this transition happen and help alleviate what felt like a heavy weight that we were unsure of how to pick up and move. We wanted to make sure we left our house in good order before we left as we do not know when we will return, and one of the loose end items that we were hoping to tie up was to sell our second vehicle. The Lord brought along a buyer the day before our departure and we were able to make the sale. We are amazed at how all the details have come together as everything we thought we needed to do before leaving was actually accomplished.  

As we began our trek towards California on Friday, March 27^th (the targeted day), we sat in astonishment of all that had taken place in such a short expanse of time, and how God had made the way forward not only in the tasks that needed to happen, but also with mine and Matthias’ well-being. The Monday before we left, I had my last ultrasound and appointment with my doctor in Albuquerque. Everything with Matthias was good in the sense of nothing drastic had changed, and I was surprised to be given the report that my amniotic fluid had decreased and not increased. The polyhydramnios condition had been making it very hard for me to breath easily and move around comfortably, and I was getting concerned that I was leaving the moderate range and heading into severe. The week leading into our departure, I began feeling a little better and was shocked when I learned out why.  My doctor said my amniotic fluid levels dropped from the moderately high range to high normal. Praise the Lord! This doesn’t mean the condition isn’t still present, but I was thankful for the reprieve. Now we just needed to get to California before anything else changed.

This would also be another hurdle to overcome. The good news of the amniotic fluid came with the admonishment that we shouldn’t drive without stopping every 90 minutes to 2 hours without taking a break for me to walk around. Otherwise, I could run the risk of getting blood clots. We had determined that our family would drive our car hauling a trailer with our belongings. So with the realization that we would now need to stop with such frequency and California having a law that anyone driving with 3 axles must drive at 55mph as the posted highway speed we began considering if we needed to adjust our travel plans. Thankfully, a gentleman from our church, had offered to help us drive if we needed it. Our contemplations led to the decision that we would rent a car for our family and dog to travel in, and our friend would drive our car hauling the trailer. That way we could stop as we needed without having to drive so slow and then maybe everyone would arrive in CA within a reasonable amount of time. We were all given travelling mercies even with the trailer getting a flat tire, and amazingly, arrived at Daniel’s parents’ house in two days’ time. We were grateful that not only our friend was safe with the trailer trouble, but that we were able to continue driving onward to be able for everyone to arrive at the end destination on Saturday night, accomplishing the trip within two days instead of three.  

Now we wait to move into our new abode on April 1^st in the Sacramento region, we have the opportunity to visit with family, set up care with the medical team on April 8^th, catch our breath after what seemed like an insurmountable effort, and celebrate the resurrection of Christ Jesus this coming Sunday. We are enjoying spring weather, grass and greenery, budding plants, and the sound of Sutter Creek flowing through the background. In a way we sit in stunned silence, taking it all in, like it’s the calm before the storm. In some ways, we feel like we are on a vacation, and yet still have a longing to be able to settle in, become a little more established, and find what will be our new normal and routine knowing that life will soon change again. Certainly, having no idea as to how long California will be our new home. We do not know what each day will bring, but what we do know is that the Lord is faithful and merciful and is caring for our every need. He has given us such a beautiful family to love and steward, and it is a great privilege to care for the children He has gifted us with. They truly are a blessing and we love each of them dearly!     

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

To our family and friends,

Our apologies for the length of time that has elapsed without giving an update, but we greatly appreciate your continued prayers on our behalf. The Lord has been answering prayers and giving us clear direction as we seek advocacy for Matthias. We certainly still have a lot of questions and variables to consider, but we are grateful that God is making a way for us and showing us how to walk therein. 

In our pursuit of supporting and caring for Matthias, we realized that we needed to consider care facilities and options outside of NM. The two primary locations for this were Boston, MA and Sacramento, CA. It became evident that Boston was a definitive “no” and that UC Davis in Sacramento was willing to consider taking us on as patients. It couldn’t be any clearer than that. We have been in communication with the Fetal Care Center in Sacramento and have been working with them to determine next steps. As such, we will fly to CA this coming Friday, February 27th, to then meet with doctors/specialists/surgeons/care team on Monday, March 2nd, as well as complete further testing. This will be a very full day, but we are hopeful that we will come away with a better idea of what might be possible. Some of these considerations are the kind of care that can be offered to Matthias to include potential surgery, a temporary relocation for our family that would take place prior to Thias’ birth and continue for however long is necessary to care for all of his needs, and whether we can still be taken on as patients even if intervention measures are not considered possible. 

In the meantime, we have continued to see our local providers to keep tabs on his development and growth. At the end of January, it was confirmed through a pediatric cardiologist that the hypo plastic left heart syndrome was present, and therefore, the left side of his heart is severely underdeveloped. However, his heart has a good heartbeat and doesn’t appear to have any great stress or fluid build-up around it, which we are so thankful to the Lord for. Matthias is still on the “small” side as far as growth is concerned, but that is not abnormal for a Trisomy-18 baby. The cysts that were seen on our first anatomy scan have resolved, and there have not been any new developments of concern to transpire up-to-date. Praise the Lord! Another praise we have is that my placenta shifted locations, which will allow for the consideration of a normal delivery, as otherwise, the likelihood of needing a c-section was much increased. Starting this week, I will begin weekly ultrasounds with an anatomy scan every 3 weeks or so. We were told this is standard, “by the book” procedure for a high-risk pregnancy. 

Once we return from CA we hope to have a clearer picture of what comes next and what our course of action will be leading up to Matthias’ birth. There is still a possibility that he could be born as a still birth, but we are very prayerful that God in His mercy will allow us to meet him alive this side of heaven. Please continue to pray as God leads.

With much love, 

Beth and Daniel

To our family and friends,

Daniel and I would like to ask you to pray for us and our little one in utero. We had some lab screening genetic bloodwork done for the baby shortly before Thanksgiving. We’ve done this test previously with the girls so we could find out the gender and not because we had concern from a genetic standpoint, and we repeated that decision for this baby. However, we received the news yesterday that the baby is high risk (our risk factor is 91 out of 100 according to the lab screening, which makes the probability of occurrence quite high) for a genetic condition called trisomy 18. We will need to have this confirmed with a diagnostic test, which will occur during our next ultrasound on January 2nd that will perform an extensive anatomy scan to include a fetal echocardiogram. If the ultrasound shows indications of this condition being present the outcome is grim and it’s unlikely the baby will live very long. There’s a high chance of miscarriage or stillbirth with this condition and if able to carry to term and deliver the baby might only live for a short time. Depending on the severity of the condition the baby might live up to a year, but it’s not common for babies with trisomy 18 to live past a year old. We do have the option of other diagnostic testing, but at this time we’ve chosen to wait for the anatomy scan ultrasound. So for now we are continuing to trust ourselves and this little one in the hands of our sovereign Lord and will try to wait with not too much trepidation for January 2nd as there is also a possibility that this screening test could be wrong. Ultimately, we desire that this baby will continue to be given life, but whatever God has in store for us our prayer is that we can walk this road with much grace and perseverance. Please pray.

Thank you and with much gratitude for each of you,

The Skaggs Family