Good morning. Yesterday and today have been so hectic, thus the late post. But, we have some new updates for you.
As you all know, Adam had his biopsy procedure yesterday morning at 9:30 am. The procedure was done within an hour and Adam did great. There were no complications, and the surgeon (along with the pathologist) believe they obtained a viable tissue sample which they would be able to analyze for determining its DNA. Some of the tumor was necrotic (dead) so it was important for them to obtain a sample of the live part of the tumor. We will not know the biopsy results until next Monday. (So far away, I knowwww…)
After returning from the recovery room around 12:30 pm yesterday, we were informed by the doctor that we were to be discharged that afternoon. In that moment, so many thoughts ran through my head- were we ready? Was it too soon? What if something goes wrong? How will we know what to do? I hadn’t mentally prepared myself for this moment because I didn’t think it would be coming so soon. It came as such a shock to me. After living in a hospital for just about this entire month, the thought of going home seemed terrifying and so foreign. But the doctors felt that since Adam’s biopsy procedure went well, and since he had been improving so well this week, it was time to send us home, so we could return to a life of normalcy. But, knowing that our new “normal” would never be the same as before was so scary to me. Despite our fears of leaving the hospital where we had the comfort of nurses and doctors right outside our door, we were discharged at 9:30 pm last night. I hesitantly asked the doctor if we could stay one more night, and her response was, “No, Adam needs to go home. You will be fine, you’re great parents”. I just about cried after hearing this. As reality finally set in that we were actually going home, I realized that now is when the hard part begins…
I think Adam was ready to go home, (as you can see from his smiley face ☺) but mom not so much. We didn’t realize how much stuff we had accumulated in our hospital room over the last few weeks, so it took us about 5 trips to and from the car. Good thing my parents were at the hospital to help us out. We had to pick up all his meds from the pharmacy, wait for all our supplies for Adam’s central line to arrive to our room before we could leave. We drove home last night (in the rain!!) with a full car load of stuff, but alas we made it home around 10:30 pm last night.
Adam’s NG tube was removed right before our departure. (Hooray!) His eating had improved the last few days (eating about 20 oz per day) and so the doctors were comfortable with us going home without it. We are SO glad we didn’t have to bring him home with the NG! The downside to this is that all the meds he’d been receiving through his NG will now have to be given orally. We have not had success administering oral meds to him in the past, so this morning brought many new challenges to us. It took us a long time just to give him 2 meds. And more meds later this evening. Hopefully this gets easier. We pray that the Lord would lead us and guide us in how to care for our sweet little Adam as we learn to live with all the challenges that come with caring for him at home every day.
We all had a restful sleep last night. Adam, Mom, and Dad all got to sleep in their own bed last night. And Adam slept through the night without needing any feeds! (Good news for Mom!) He slept in the car ride all the way home, and stayed asleep as we transferred him to the crib. I think he slept over 12 hours last night for the first time in a month! Thank you Lord ?
Please pray that the Lord would continue to supply us superabundantly especially now that we are at home. Our current prayer burdens are still the same as previously posted. We are anxiously awaiting the results of the biopsy next Monday.
Here’s some photos of our very happy little boy this morning, with no tubes or wires!!!!!! ♥️♥️♥️
I pray that your adam makes a full recovery! He looks so happy 🙂 We here at public works, especially, the PWWLC are all thinking about you and your family and wishing you all the best.
Reading between the lines at – no news…being OK/good news?
Thinking that perhaps your time at home with Adam is perhaps more ‘robust’ than
anticipated??? and sending extra prayers to you for strength and peace during this
passage…along with prayers for all the family members close to you 3 who
walk this with you … and desperately want to help/fix the situation.
Holding onto God’s providence, with gratitude, for His provision every step so far.
Sending love, N + J
So great to hear!!! It is so precious how Adam remains cheerful throughout his stay at the hospital. His smile melts my heart. He must be so happy to be home again. Stay strong little guy. Here’s to getting well, one day at a time.
Precious little boy! So good to see it smiling and free from tape and tubes.
I’m so glad you went home. I had the same feeling going home, I was scared but it was so good for our Mel and all of us!
May the Lord grace you and supply you all daily!
This update made us so happy. We have never met you all, but you have been in our hearts, thoughts and prayers. I think I tear up every time I see a photo of Adam. We will continue to pray for the bountiful supply and for his full recovery. Hope he continues to sleep well 🙂 Grace upon grace!
Hannah and Mark, How wonderful to be allowed to go home with Adam! Sleeping in your own beds is the best! Praying that Adam can take his meds easily, and that next Monday brings you good news. Much love from Partho and me.
You might be hearing a bit of the Hallelujah chorus coming to you from
NC??? My Bible study ladies are praying for Adam as if he’s our adopted GRANDson
and he is truly SO very GRAND. God is listening – and His supply’s abundant.
Blessings and love always, N + J
So happy the Docs felt that Adam was well enough to go home. Sleep is so hard to come by in the hospital. I pray that you all get rested up so that the healing can continue in a happier place! Love you!
Joyce and I are thankful for the good news and pray that the healing will continue for Adam and his family.
So thankful he did so well at home! It must have been nice for him to get back in his own bed too 😉 meds for kids are hard but we will pray that it will get better day by day. Grace upon grace to meet the needs each hour.
God is FAITHFUL!! Lord take care of this brave little one all the way!
Much love from all ours!
Praise the Lord! We are so happy to hear the good news and continue to pray for Adam’s full recovery.
Hallelujah! Such glorious news! The Lord is truly faithful! This post put such a big smile on my face. Praise God for answered prayers!!!! Xoxo
Exciting news! You guys will do great, just trust your instincts. We live the updates and are rooting for your family every day.
Hoooray! You’re going to do great, Hannah and Mark!
Great to hear you are back at home… Much grace to you! Standing with you in prayer,
So glad you are all at home.. you are so lucky that Adam is such a good baby that you can transfer him from the car seat to the crib and he can stay sleeping.. you and Mark are great parents. Keep it up.. you and your family are constantly in our thoughts and prayers.. if you need anything, let us know. Say hello to your parents for us. Are they babysitting for Sarah??
Thank you for the updates so that we can follow along with you in prayer and in heart. I don’t even know either of you that well but since I first heard about Adam you all have been on my heart so much, and your happy news makes me happy as well! I will keep praying for you as you transition to a new phase at home, that the Lord will be your wisdom, strength, grace, and covering in every way. And what wonderful news that Adam slept so long – that must be restoring and helpful to him as well as wonderful for mom and dad. 🙂
Wow! So much goodness going on at the same time! Yay! Finally! I share your joy! Lord, continue to rule and reign over this family. We love them dearly!
P.S. Those pictures of Adam are truly PRECIOUS! Love them!
Hurray!!! So happy you guys are home! His smiles just about made me cry! You guys are amazing parents and you are doing awesome!!
He looks amazing! Home sweet home!
I cannot imagine how overwhelming it must have been to process all of this! What has only been a month, seems like a lifetime. You guys are doing great and will continue to be the best for Adam. We love you! These pictures of Adam are incredible. You can tell he is happy to be home!! And way to go, Adam, sleeping 12 hours!
???
So happy you guys are home!! Jia yo, mom and dad!! ❤️❤️❤️
Love the pics of his sweet smiley face! Warms our hearts! May the Lord supply you and be your source moment by moment. You guys are great parents! I pray for more rest for all of you. We pray for Adam to be able to take his meds completely and easily. Much grace! We love you guys!
Yes, going home is the hardest part and adjusting to the new normal. My son was also for different reasons at the hospital for two weeks and we received a new diagnosis at the hospital, so the first day or week was extremely hard getting used focus everything. Much grace.
A nurse told me to get the baby used to syringes sooner the better. So at three months we gave him tons of meds by mouth and didn’t hide them in bottles. Over the long run that was very beneficial to us. We also had an NG tube at the hospital and were so relieved we didn’t have to bring it home.
Thank you for your updates. We are praying. All the way from IL!
I am so happy to read that Adam is doing better and that you all got to go home! The nurses are doctors are right – you both are great parents! Continually praying for you all.