As I lay down to go to sleep Tuesday night I thought, “today was a good day.” If you had asked me that earlier, I wouldn’t have said that, but I am thankful for the little things.
Got a late start Tuesday and didn’t get to the hospital until 4 p.m., AND I was alone with the girls since Henry had some administrative things to take care of. I knew I would have to take them by myself at some point so why not practice.
I took a movie and dinner to keep them occupied. As I was setting up the dvd, I realized I didn’t have my computer’s power cord. DUH! So, scratch the movie. I wanted to cry. Pulled myself together and put the room t.v. on – not ideal, but it worked.
Left two and a half hours later to get the girls to the RMH in time for their regular bedtime – regular pre-Ryan… they haven’t had a regular schedule for almost three weeks, and it was just two days after the time change. Driving to the RMH, I lost my bearings for a moment and realized I had never driven TO the house during the daylight hours.
Got the girls in bed by 7 p.m. but fought with them for almost an hour even though neither of them had long naps. I hate fighting with them to go to bed. Combination of things made them fight bed time, but they finally fell asleep.
Henry called to say he hadn’t left to go to the office yet – it was almost 8 p.m. so he wouldn’t be down anytime soon. No power cord for me. 🙁 Frustrated, I turned the t.v. on.
If you are starting to think things didn’t exactly go as planned and are confused as to what was so good about my day, you win a prize. BUT, there were a several things that made me thank the Lord for a good day as I was falling asleep.
~ Ryan was awake, aware, and responsive for almost 10 minutes of my 2 hour visit. (He usually falls back to sleep within a minute or two and hasn’t really been able to focus his eyes due to meds) I was able to talk, sing and play with him for that time. It was a lot of fun and encouraging.
~ I realized that while my visits with the girls in tow will be short and hectic, it is doable.
~ I found a book at the RMH on the play room shelf that I’ve tried checking out from the library, but has a huge waitlist. And there it was, minding its own business in the children’s library at the house.
~ I watched a t.v. show Henry and I love, but can never remember when it comes on. I totally would’ve been surfing the net if I’d had my computer cord. It was a good episode too.
So, thank you, Lord, for the small things…
As for an update on Ryan – yes, I know that’s why you are all here…
Henry and I spoke with his cardiologist today (weds.) and she is pleased with his progress. His shunt is doing its job and he is healing as expected. Henry (and I, but mostly Henry) is frustrated that we don’t have more to show for our three weeks at the hospital. It’s hard to leave our baby there day after day and feel like we’re in a holding pattern. We have no firm commitment or time table on putting his omphalocele or heart back in place and that is impeding his breathing.
However, the reality check is that we have a baby and he is alive. We were told he wouldn’t make it to 20 weeks gestation and he is now three weeks old. And, while he is not able to sustain life on his own, we are working toward that goal and our team of docs thinks there is a reasonable chance we can take him home at some point in the next year. (ugh!)
There are two factors holding us up at the moment. One, he just had surgery a week ago. He needs time to heal from that surgery before pressing forward. Two, the team is in unchartered waters and simply doesn’t want to risk putting Ryan at a disadvantage by moving too quickly. They have experience with omphaloceles and open chests (mostly due to surgeries as opposed to structural defects) and the facts tell them to wait; to move slowly. Our family has a hard time moving slowly. Henry and I are both movers and shakers so it is very hard for us to sit and wait. Yes, Lord, patience is a virtue.
So, for now we wait. Ryan is tolerating breast milk and gaining weight. He is now over 9 lbs. He was in newborn diapers for a week before moving into size 1. My girls were in newborns for quite sometime. Not my boy! Tolerating breast milk is awesome for an omphalocele baby, and gaining weight is unbelievable for a heart baby. These are the things we have to cling to now. And so we wait…
(c) 2016 Leighann Marquiss
Comments (15)
Isaiah 40:31–“But those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.” Leighann, I remember when you were dating Henry and you sent me a card, and included this verse beside your signature. God teaches us all to wait. Praise be to God. We will wait for You, Lord! Love, Marmi Marquiss
We’re so happy to hear Ryan is gaining weight! Praise God! We continue you to pray for your family.
-Brent and Julie
ohhhhh the lesson of patience. waiting does not come naturally for us, does it? especially in today’s day when very little requires waiting. there’s express lines at grocery stores, microwaves, 400 channels on television. . .the list goes on.
so waiting is really a foreign entity for us.
i love how despite the frustrations and uncertainty, you focus on the positive. these are qualities that will serve your daughters well. you are setting such a great example for them, and i’m sure it helps your own heart, too.
rejoicing over ryans alertness, his weight gain and his progress over these few weeks.
just know there are many lifting you up, carrying you when you can’t carry yourself.
thank you for eloquently sharing your heart here. your journey is an inspiration to many.
blessings to you from tennessee
I understand. It’s so hard to be patient and just wait….waiting is so hard,especially for people who are used to being on the go. Just take one day at a time. Each day is a day to rejoice in. (But I do feel for you – especially having been there).
I’m so glad you are able to spend time with your girls. Little people have a way of keeping some normalcy in the day don’t they?
Here’s a verse for you today:
Psalm 42:11 “Why art thou cast down, O my soul? and why art thou disquieted in me? Hope thou is God: for I shall yet praise him, who is the health of my countenance and my God.”
Hey Leighann and Henry-
It is so good to know that baby Ryan is doing better and better as days go by and I am so proud of his parents and big sisters who are doing such a wonderful job!!
We keep praying for all of you and hope that Ryan gets out of the hospital soon healthy and happy and you guys can unite as a family very soon!
Please let us know if you need any sort of help.. Groceries, baby sitting anything!!
Love
Ashraf, Abbas & Aahil
Praise the Lord for weight gain. Your optimistic spirit is so encouraging. I feel encouraged when I talk to you or read what you’ve written. Somehow I think it should be the other way. Thank you for allowing me a peak into your chaotic life and how gracefully you are handling it. Keep focusing on the little things to encourage you and keep you going. Ten minutes to sing to my awake baby would excite me too. I am glad he could focus on his mama for a while. Love you lots and can’t wait to see you and Ryan tomorrow.
It brought tears to my eyes when you wrote about Ryan being alert and you being able to talk to him and sing to him. I am very sure that your heart was warmed by this!! It is so important for a mother to be able to have those special moments to bond with her child…and I’m glad that, however brief, you do get those moments! I will continue to pray for you all, especially you now that the girls are mostly in your care. Love you!
Richelle
I am still confident of this: I will see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and take heart and wait for the LORD.
(PS 27:13, 14)
We wait in hope for the LORD; He is our help and our shield. In Him our hearts rejoice, for we trust in His holy name. May your unfailing love rest upon us, O LORD, even as we put our hope in you. (PS 33:21,22)
Trust God and the Doc’s wisdom – waiting will let little Ryan grow stronger. I am praying as you begin to work out what your routine will be like for the next little while. I am praising God with you for the “little” things!
thanks for the update! LOVE the new blog look…fun! great to hear all those praises…the girls doing well, you doing well taking the girls to the hospital, Ryan gaining weight. WOW!!! you all are doing AMAZING. such a testimony to His strength and power. thanks for letting us walk alongside you!
Prasie God he is doing well, and though you may feel like you are not patient you are doing great! While sometime in the next year seems so long it will hopefully fly by and your beautiful family will be together. Hang in there, you are doing great and brave to drive to DC by yourself 3 weeks after having surgery yourself!
waiting with you and holding you up in prayer along the way!
Thank You Heavenly Father for blessing Leighann and Henri and the girls with YOur presence and quidance as they go through these difficult times. ThankYou God for the blessings of sweet girls who play well at the hospital and for a sweet, sweet boy who wakes up when Mommy is there to give HER some of his love. Thank You God for just BEING WITH this family and giving them Your peace, Your joy and Your comfort. Amen.
Thats all very positive…. you can do all things through HIM…so keep up the work, and it always helps when I have bad moments…. “Lord help me to be a patient and more serving SERVANT to my family.”
Ill be praying for you.
It is wonderful to have confidence that God is in control – He knows the end from the beginning and He is guiding the in between. Leighann, you simply bless my heart as I read your updates. Thank you for being so transparent. What else can you be when you are being carried by the grace of God? We are praying here in Greenville for that little guy. Oh yes, your little girl hobbits look like they are sweeties. they remind me of you. Will always cherish my fond memories of you. I will continue to check up on little Ryan. Lovingly, Lydia Hines
Wow! That is amazing that Baby Ryan can have breast milk, which he really needs right now! GO MAMA GO! It’s sounds like you are at a “hurry up and wait” holding pattern. And I can tell from your posts (although I don’t know you) that you are restless. I hope you can find something to occupy your time waiting and keep your brain focused. 🙂 Hang in there, our family prays for you nightly. 🙂