Greetings dear family and friends,
Matthias was discharged on 20 July, 2026 after nearly six weeks in the NICU and PICU. This timeline alone was a surprise to be so short by both us and the doctors. Matthias had lot of ups and downs (and still does) in the hospital, but overall he was a resilient guy who was so easily affected by the slightest of changes, but strong enough to bounce back every time. We plan to go back and fill in some of the holes in these post to hopefully give a better idea of what that hospital time looked like, but time is not available to do so currently. We were very excited about the ability to have Thias discharged and in a home environment that allowed our whole family to be together (our two young children where too young to go into NICU). The NICU and their staff had done a great job stabilizing him and getting him optimized for discharged. There were lots of tweaks in his caloric intake, duration of feeds, supplements, and medications to work out, and oxygen needs all before he was allowed to be discharged. We had time in a room-in room in the NICU that allowed us to take care of Thias on our own to get used to the level of care before being discharged. This was helpful, but only showed us a glimpse of what was truly needed to take care of him. There would be no way to truly mimic what is reality. Our biggest challenge was the drive home in which it was 100 degrees outside and we were in rush our traffic and his airways was getting blocked by position in his car seat all while we were late feeding him. He eats through a NG feeding tub with our feeding pump and we were trying to figured out how to warm up milk on the go and keep him from spitting up and de-sating (this is when his oxygen saturations drop below an acceptable range). We had to work through finding safe places to pull over to vigorous stimulation to help recovery from desaturations and increasing oxygen flow and finding what position would work to have him not spit up while we stayed in a parking lot feeding him. After over 2 1/2 hours we made it home (even though the drive should take 1 hour). He was quite unstable when we made it home and very ashen, but seemed too unstable to try and go back or do anything but jump in with both feet and try and create stability and bring him into our home and integrate him with the rest of the family.
This meant that Beth and I nearly pulled 5 all nighters in a row making sure to perform all the actions neccessary to keep up on his care and responding to all of his issues. Eventually he did get more stable and after one week took him to his first doctors appointment (20 minutes away) which was a big stretch, but we made it. The following week we ventured further for his other doctors most all doctors appointments are a two hour round trip and take a lot out of him. We found in the beginning that one appointment in a week could make him dehydrated (which he is very sensitive to with his single ventricle anatomy) and could cause him to get severely constipated. These instabilities are caused by numerous factors which lead to much greater frequency of desats and some were so severe that he passes out (vagals) and when he comes to can hold his breath and become apnic. This has lead us to have to perform extensive actions to restore his airway and make sure he stabilizes. Most of these instances starts with him being in severe pain and then leads to all these other actions taking place. The first major event he had we had to bag him with oxygen and we ended up calling the paramedics for them to evaluate him and see if he needed to be brought back to UC Davis Children’s hospital. In coordination with his cardiac team we determined to stay home and he stabilized well at home. Since then we have had many events which require significant intervention, but in the more recent weeks these events are getting less frequent and less severe. This is something we are so grateful to the Lord for. He has allowed us to continue to care for our precious son and we know that the Lord has counted his days. Even when we are so uncertain what the right step is or what actions to take he has given us direction in each moment to know our path. We knew this time would be difficult, but the level of care is quite intense and there is absolutely no break. We don’t people to think that this is something we don’t want to do. This is absolutely not the case. We just want to give a glimpse of what our lives are like. We are humbled that the Creator of the universe saw fit to knit Thias together and bless us with him. We are blessed to have him and care for him. He blesses our family more than anyone could imagine. Our girls love him so much. They help us with his cares and want to hold him daily if not more often. They get quite upset if this can’t happen in a day. They know when there are issues and have been able to alert us to problems even before we knew. To observe a child’s interaction and care is a real blessing. They don’t care if he has a bunch of wires or tubes hanging off of him. They want to talk to him, share toys, pat his head, rub his belly, or hold him and give him kisses. What simple yet profound love they show. I certainly have learned more of what a selfless love is through our dear children.
In this time with Thias home he has made so many huge steps. He was interactive in the hospital, but once he has been home it has taken on another level. He loves staring at you with his blue eyes, or trying to reach for colorful toys, and even recently starting trying to talk with us. He loves it when he can see new environments and surroundings. He is very curious and really likes interacting with his sisters. If he isn’t doing as well this alone can turn him around.
When we left the hospital he didn’t weight much more than his birth weight. It was nearly identical, but since we came home he has put on two pounds of weight (he is over 6 lbs)! We have been blessed with a wonderful cardiac home monitoring team that has been helping us direct his care with dozens or maybe even hundreds of careful inputs multiple times a week to help stabilize and improve Thias quality of life. They have a dietician on their staff that has been a blessing with carefully reviewing every piece of his nutritional plan to improve every aspect that we can. We were told when we left the NICU to only strive for any weight gain. Meaning throw out all growth charts since Trisomy-18 is on a a scale, but to add on top of that a severe heart disease it would be very difficult to have any weight gain. Given his trisomy-18 and congenital heart condition he can burn up to 30-50% more calories each day than an average baby. He also has volume limitation of how much fluid volume he can intake because of his heart and trying to lessen fluid build up in the lungs. He achieves weight gain by increasing the caloric count in each ounce of milk. Thankfully Beth has a high caloric count for her milk, but it still needs additional calories. In the hospital and for the first few weeks at home we were using a formula called Bobbie to achieve a very high caloric count. In recent weeks we have switched to breast milk fortification. Since then he has been greatly helped with less acid reflux, less overall cramping, bloating, and improve caloric intake. We actually had to reduce the amount of caloric intake for other factors of constipation, but he continues to grow far beyond what was thought possible. He averages 15-25 grams per day gain average on a weekly basis. We were told to only look for a 1 gram increase each day. We achieve good gain on the Bobbie formula, but can achieve sometimes even better gains on the breast milk fortification. All of the breast milk fortification is brought about by a wonderful company we were told about through a family friend called Milkify. They take breast milk and freeze dry it and ship it back to you in pouches which allow for a careful dialing in of his caloric intake and improved overall health and stability because we are no longer on formula. This has been a wonderful help for Thias and has dramatically improved his overall health in the last couple weeks.
We have had many scares and difficulties during our time at home. One of which we rushed to the hospital with a fear of a bowl obstruction. Thankfully, we didn’t end up needing surgery and we were sent home. We are still continuing to try and find the balance between giving time to our girls, taking care of Thias, and trying to get to appointments and somewhere in there having time to sleep. We certainly don’t get anywhere near a full night of sleep since we have to be up round the clock for him, but there is a better balance and it has allowed for me to get back to work as much as I can.
We covet your prayers and we want to extend a heartfelt thank you to every person who is praying on our behalf. We know that there are thousands of people around the country and even around the world praying and reaching out to us. This alone causes us to pause and wonder at the goodness of our Lord. He says that He will be with us even to the end of the age. In Isaiah 41:10 God speaks through the prophet reminding us to keep our eyes fixed on Him. It says, “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” In Psalms 121: 1-2 it says, “I lift up my eyes to the hills. From where does my help come? 2 My help comes from the Lord, who made heaven and earth.” We have been upheld by the righteous right hand of our Lord. There are innumerable things that He has done for us and graciously supplied in our time of need. Countless times when we were at the end of our rope and the Lord provided exactly the need or gave us clear direction, or joy, or stability right when we needed it. There is nothing we can do on our own for everything comes from our heavenly father. James 1:17 says, “Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change.” May every word we speak give glory and honor to the One who has given every perfect gift. The gift of life, the gift of prayer, love from our close family to even strangers we have never met. We will cherish each and every moment during this wonderful time. May you all know more clearly the joy of the Lord.
