A good kind of tired

It’s hard to believe that tomorrow marks the one-week anniversary of Rudy’s homecoming.  The week has flown by and we’re adjusting to life with Rudy at home.  Trish mentioned the simple joy of both being at home together without any feeling of being torn.  Some habits die hard–after 27 weeks in the ICU I had to catch myself tonight as I picked up the phone for an evening call down to UCLA for an evening check-in with the nurse.

Rudy’s routine takes some learning and time, with periodic meds and treatments throughout the day that start at 6am and end at midnight.  So it cuts into sleep, but what newborn wouldn’t?  Of course his condition tends to keep us on our toes and has it’s humorous moments.  This morning he seemed more agitated than usual and none of the usual fixes (diaper change, suction, food) seemed to do the trick.  Understandably, thoughts of cardiac complications are quick to fill one’s mind but in watching him chomp furiously a closer examination revealed a tooth poking through.  Considering everything else he’s facing, we tend to forget the standard baby stuff–this might also explain the fever episode on Friday.

We had an appointment with our Pediatric Cardiologist here in SB today which stretched over 2 hours.  It was a bit surreal as our journey with HLHS started there the day after our troubling ultrasound in August.  Hard to believe all that’s transpired since then.  We were very pleased with his thoroughness in having been in contact with the team at UCLA and then doing his own Echo and EKG to get a baseline on Rudy’s function.  It is very important for him to be working together with our pediatrician so they will be in contact on the different medications he needs.  This seemed to be more seamless at UCLA where all the doctors worked on the same floor, but the doctors understand the acuteness of Rudy’s condition and express that it’s important for them to maintain good contact.  Much of what they have to assess is the medications he’s on that stem from the various traumas he’s had (thyroid, chylo, kidneys, stomach and, oh yeah, heart surgery).  The process needs to be careful and measured without too many changes at once to not upset Rudy’s balance.  I continue to be in awe at what Rudy has overcome, but today also made me aware of the fragility of his condition.  He still needs two major heart surgeries whose outcomes can be greatly impacted by minute variances in pressure within certain veins or the function of relatively small valves–all things far beyond our control.  The walk of faith continues as all of this is in hands much greater than ours.

Rudy may not be in the ICU but it seems that sophisticated medical machinery seems to follow him around, as this photo from today’s appointment bears witness.  Not your typical well child visit….

Rudy gets an EKG
Rudy gets an EKG

14 thoughts on “A good kind of tired

  1. Rudy is looking great, our Nick always had very red cheeks, meds, etc……but who cares…………..also a chubby little guy, now almost a 10yr. old string bean………God has blessed us, prayers for you all, I know Rudy has 2 more big surgeries; as you take one day at a time…….Nick’s Grandma

  2. Rolf, it’s always tough when they actually throw some normal baby stuff into the mix! We were also overwhelmed when we started with a cardiologist at home…you get so comfortable with those at the hospital. We opted to keep our one in Boston and deal with the 2.5 hour rides as needed. In the beginning is was a hassle as the appts. are frequent, but now it’s just once a year! It’s strange how a hospital begins to take on the feeling of “coming back home.” Rudy looks great, even though he’s hooked up like a robot being charged! Enjoy your days…and nights!

    Continued prayers from CT

  3. This little guy is growing! What does he weigh now? You are all learning that the “new normal” changes daily. You are quick learners and we are so proud of you and the help the other children are giving. We pray for your health and rest, Rolf and Trish. You are not walking this road alone and with God’s blessing you will continue to be the parents you need to be. Your children are so blessed to have you two.

  4. Yes! the walk of faith continues….and I have to say, your walk is quite unique and arduous. One day you’ll enjoy a happy rest! Meanwhile, enjoy all the lovin’ along the way…

    Congratualtions Rudy on YOUR FIRST TOOTH!!!! You are such a cutie-pie….can’t wait to see that tooth peekin’ out! I’m so happy you get to be home with both your mummy and daddy AND the big bubbas and doting little sister! You’re one lucky boy!

    Lotsa luv and continuous prayers!
    The Van Fam

  5. the little mister has a tooth! never a dull moment with that boy. 🙂 that is wonderful! thank you for the continued updates. we are so thankful Rudy is home with his family. and after reading through the comments i just have to say that i am also thankful for your HLHS friends that can offer continued encouragement and support.

  6. Congratulations Rudy on getting your first tooth. With all that you have been through the past 6 plus months, what is your first tooth. You just take it in stride. What a guy. We are so proud of you. Keep up the good work. We continue to pray for you, your Mommy and Daddy and you brothers and sister. We love you grandson. Grandpa Dick

  7. I came across this passage to share with another friend whose baby is in the hospital, and I thought of y’all as well. Congrats on having a full week together at home as a family!

    “Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” Rom 5: 1-5

  8. I can do all things through Christ who strengthens me. Greater is He who is in me than he that is in the world. This is the day the Lord has made and I will rejoice in it. The big 3 that sustain me during trials. However, none of us know what you are really going through, unless we have lived it exactly. So we continue to lift you up in our prayers, which are daily. We that believe know that our God is a great God whom we call on for strength, wisdom and endurance. I have found, He is always with me. Get your rest when you can, eat well and love each other. You are doing a great job I know. All of us out here love you. Love, Cousin Dianna

  9. I think Rudy needs to add two beads to his long string one for the first week home and a white one for his first tooth. Congratulations on the new normal.

  10. hey BIG boy!! A TOOTH!! Wow…another milestone!

    Rudy looks GREAT!! You guys are heroes! The two of you are quite a team! Congrats on your first week at home!!

    Much Love!!

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