Friday, June 29, 2007
SOOOOOO... we dropped Jackson off to Grandma and Poppy's house today and headed to Children's for a long day. Nancy was giving Duncan precious love in the morning... so she passed him off to me for some quality time before we made the walk to the cath lab. He entered for anesthesia around 2:00pm and we were informed all went well around 4:00pm. Dr. Cheatham met us in the family waiting room afterwards to explain the results - everything looked good! Then, Ricci, Diane, Scott and I met Duncan back in the cardiac ICU. I expected to see him rather groggy (his condition after the surgery), but instead he was bright eyed! He looked awesome... not needing more ventilation and not looking drugged. His breathing was still a bit fast, but the cardiologist explained his physiology needed more time to adjust to the procedure. The hope is that we will see a positive change over the next few days.
I will keep you posted!
PS. Tomorrow our boys are 4 weeks old! A month already... hard to believe!
Thursday, June 28, 2007
Jackson's eating is also very good - the little oinker. We are proud to say that a milestone has been achieved with Jackson; we can get away with extending his feedings to every 4 hours instead of every 3. He is eating a bit more at a time, so this works GREAT for him AND for us!
Tuesday, June 26, 2007
Scott and I visited today at separate times (my visit coincided with Ricci's visit and Scott's visit coincided with Nancy Nikkeforow's visit!) and we all agree that Duncan is looking fabulous! His color is awesome and his little cheeks are back to normal (had been a bit swollen due to retaining some fluid). Scott got the opportunity to speak with the cardiologist on call and he had ordered for the catheterization to occur on Saturday (this is a minor procedure accompanying the 1st surgery - a small "balloon" is placed in the atrium septum to allow blood flow between chambers of the heart). He predicts Duncan being at the hospital through NEXT week... so we're looking at at least 10 more days, and maybe more depending upon how he feeds.
Jackson is enjoying lots of walks outside. Last night he accompanied Scott and myself to Caribou Coffee at the end of our street. Scott and I ordered our favorite yummy frozen drinks (THANKS RACHEL!) and plopped on the comfy leather chairs, enjoying our reading material while Jackson chilled in his infant carrier. I have a feeling this could be a family tradition! I was in heaven.
Meanwhile, our yard is looking better than ever, thanks to neighbor Liz, who was our ANGEL on Monday. She has me spoiled, because I do not have the gardening expertise she does! It was wonderful to have an expert playing in our flower beds!
Also, a fabulous arrangement of flowers arrived today from Forest Hill Church. They are beautiful. Thanks, gang! Did I mention that Worthington Pres had been gifting us with yummy meals as well? How blessed are we?
Monday, June 25, 2007
The visitation was special, albeit a bit numb for me - since Mom was cremated, there was no casket. As a result, for me, it felt very much like simply "visiting" with old friends and family. There was much conversation about the twins and their health, which took the "sadness" element out of it for me. My main tears were shed when I was surprised and touched by dear personal friends who drove hours or flew hours to be supportive to me there. I cannot express how cool it feels to be so loved. I am blessed (makes me cry as I type!).
The memorial service was when it all hit home. It was such a lovely service, made wonderful by the spirit of Mom. She had spent much time thinking about what components she wanted in the service celebrating her life (you know Mom, she wanted to be apart of the planning!). She had the opportunity to share those wishes with Dad, myself, and Justin. And I believe it was exactly what she would have wanted - a great mixture of celebration and healthy sadness. Jim Baughman and Mary Beth Guy participated in the leadership of the service and Josh Groban and the harmoney group "Tapestries" created beautiful music pieces. Thanks to everyone who attended and thanks to everyone who helped make the night what it was.
I have received an incredible number of cards - both supporting me as a mom and supporting me as I lost my mom. Thank you, everyone. I am made to feel VERY loved throughout this journey... there is no doubt of that!
Below are the only pics I have of my time in Louisville. And they were taken by Becky!
Cousin Stacia, Aunt Jo, Aunt Lisa and myself
Back: Becky and KK (drove from Columbus) / Front: Beth (flew from VA) and myself
Today we found out two pieces of good news, one per child. Our second doctor's appointment for Jackson went extraordinarily well... we have been battling with the balance between bottle feeding (my milk) and breast feeding Jackson, trying to make sure as the bottom line that he GOT ENOUGH (he tends not to be very consistent nor patient when I breast feed him, as opposed to DOWNING a bottle - must like that nipple better!). With such a strong emphasis our pediatrician had made on monitoring his weight gain, we were really hoping for 6 lbs today. And - low and behold - the little trooper was 6 lbs 1 oz! Dr. McClellan was extremely pleased, as were we. He looked good in all other ways as well. So Jackson has been a model preemie... pooping, peeing, eating, sleeping, passing extraordinary amounts of gas, and smiling at Mommy and Daddy from time to time (or maybe that is a result of the previous item on this list).
We also discovered that Duncan is causing great boredom for his nurses in the Cardiac ICU. Which is WONDERFUL! He requires less monitoring, since his status is no longer critical, and so they do not need to keep him there... he is being moved today back to the step-down unit at Childrens. (this is where he had been moved previously when recovery was moving in the right direction - we just now pray it does not hault or switch directions again!). They will begin feeds tomorrow or Wednesday VERY slowly. We can expect a report on when he can come home once we know how he tolerates the feeds.
In other news, Scott returned to work today. He took a long lunch to go on our pediatrician appointment field trip and is at work now. Today begins full-time MOMMY-hood for me! I cannot speak for the experience until both babies are home (which might be concurrent with these blogs coming to an abrupt hault! ha!), but for now I am holding my own. Lynette is with Duncan now and we will visit with him later this afternoon.
Friday, June 22, 2007
Today's visit was much more comforting than yesterday's. His coloring looks MUCH better and his overall disposition seemed more relaxed (yesterday he was irritable and fussy - the doctor had said that it could have been due to discomfort in his tummy - it killed us to think he might be in pain and there was nothing we could do about it!). So he slept while we visited. And we each held him too. His oxygen saturation and respiratory levels were better as well.
So, we'll take it!
Jackson is developing quite the personality now as well. His first two and a half weeks of life had been pretty mellow. He ate, pooped, and slept... the latter of which took up at least 22 hours of the day. You hardly heard any peeps out of him. In fact, he was pretty boring! But now he lets us know when he is hungry - the lungs are now working! And he despises diaper changes (he's modest). Wake time is much more frequent and longer lasting, and we love it!
Sorry about no picture recently... I'm working on getting back on top of that!
Thursday, June 21, 2007
But, as Becky explained, they began noticing a swollen tummy. Shortly thereafter, he had a bloody stool. He was immediately taken off his feeds and given an IV with fluids to hydrate him. Blood work and X rays have been examined since that time and they have all come back clear... no bacteria or acids in the blood work and no gases in the wrong places in the X rays. Currently he is stable and remaining the same... still a bit swollen in his abdomen. We have been told that his symptoms are similar to NEC, an infection that begins in the intestines and can be pretty icky. The plan is to continue heavy monitoring and testing... if his condition worsens, there is a possibility of surgery to remove part of the intestines. Let's hope it improves!
Tonight they began sending nutrition (calories/fat/etc) through a central line, in the same manner that he received "food" before the surgery (he has no had anything to "eat" since Tuesday afternoon). The hope is to be able to start back up oral feeds VERY SLOWLY in a week.
The doctors have informed us that it is highly unusual to escape such a major heart surgery on such a small baby with no "hiccups" and to expect many more on the road to Duncan's 6 month surgery. Each one will seem paramount and like the world is caving in at the time - and each time we will learn something new and move on.
Scott returned to Columbus yesterday afternoon - to be with Duncan. I attended Mom's memorial service last night in Louisville, and made the road trip with my dear friend Becky back to Columbus this morning. I first got to spend some quality time with Jackson - he had REALLY GROWN in the two days I was away from him!!! Scott and I then went to Children's while Lynette (our babysitting ANGEL!) stayed with Jackson. It was a tough visit with Duncan. The update is neither good nor bad, so it's hard to know how to feel. And he looked like he was lacking color and seemed so small. Needless to say, we were a bit deflated when we left.
I am amazed at the number of individuals who have been keeping up with news on my mom and our babies. It is incredible to think of the number of folks talking with God about our hopes for baby Duncan. Thanks for joining me in prayer that Duncan remains strong and can eventually be an example of what God can do! I know Grand Jan is giving God an earfull up there too!
Wednesday, June 20, 2007
Prayer for safe travels for Scott and for Tricia's heart being pulled to be in both places.
We will keep you informed and know you will be prayerful with us.
Monday, June 18, 2007
Mom passed away early Saturday morning and Scott and I were in Louisville from that time until yesterday evening. The couple days were filled with wonderful family time. Jackson was with us... which was dear (for the Louisville gang to get to meet him) but it was difficult to give him the love and attention he needed while allowing us the sleep we needed during such an intense emotional time. But, primarily, we wanted to come back to Columbus to give our little warrior, Duncan, some love.
So, we drove home last night. Scott and I will return alone to Louisville tomorrow (Tues) early morning while Lynette and Henry babysit Jackson and a slew of folks visit and love on Duncan at Children's.
On to the good news... Scott just returned from his time with Duncan and had the opportunity to speak directly with the cardiologist caring for him. Turns out, his feeding tube will be removed sometime today (when he first began his feeds, he was a bit inconsistent in how much milk her would take from the bottle, so they have been supplementing with the tube)!!! He had three VERY successful feedings orally overnight. His tummy is tolerating it VERY well, and he seems to have the suck-swallow-breathe routine down. As I mentioned before, this was a HUGE factor in his recovery and departure from the hopsital. Speaking of which, the doctor also said he could see Duncan packing his bags and heading out of there this Saturday or so. There is a lot of time between now and then, so we will need to be prepared for any hurdles that might crop up, but for now that's EXCELLENT news! He will have beat the 2-week mark that is the average length of stay after that surgery for most babies. And he's a preemie! What a good boy! Scott said that when he heard the potential discharge date he got instantly excited, followed by instant fear! TWO BABIES at home... one with a heart condition to keep us on high alert. True, it will be scary.
Meanwhile, I was here at home meeting with a home care nurse, a service offered by Ohio Department of Health. She answered a couple of my questions, then got Jackson's vitals. Everything looks good... but the big news is his stellar weight! Our pediatrician mentioned that an increase of an ounce a day would be his preference. Jackson was 5 lbs exactly on Monday. Today, five days later, he is 5 lbs 9 ozs! YEY! And 19 inches long. So he is ahead of the eight ball. He is a bit bigger now than Duncan, who decreased in weight since the feedings began. There is no worry there, just takes awhile to beef back up after using so much energy to work to feed (before he was "lazily" getting calories through an IV).
As always, thank you for praying for my family. Dad is hanging in there. He has done a wonderful job with the details of the arrangements. Grandmom and Grandad are amazing... they just keep trucking on. Justin, my brother, is holding his own as well. And I cry when I need to... Now we just need to face the formal visitation and services, which will be trying - but healing. Again, thanks for sending your loving vibes. We feel them!
Saturday, June 16, 2007
The new dates have been confirmed with Beargrass Christian Church and Jan's visitation will be moved up to Tuesday evening, June 19, from 5 to 9 PM In Chalice Hall and the Memorial Service will also be held in the same room (Chalice Hall) on Wednesday evening, June 20, at 6:00.
Jan's obituary will be in tomorrow's (Sunday's) newspaper. Note that Jan requests that no money be spent for flowers at her visitation, but rather that expressions of sympathy go to Beargrass Christian Church or to Middletown Christian Church.
Regarding plans, Jan's brother Bradley and family fly out for vacation next Friday and Joyce's first cousin, Reta (and Norman) leave the next day, so quick brainstorming tentatively has visatation being Wednesday evening, June 20 and the memorial service early Thursday evening June 21, but that is subject to our church's availability.
We'll let you know when we have dates confirmed, hopefully tomorrow but certainly by Sunday.
Thank you for your strong support over the long haul,
Friday, June 15, 2007
Tricia, Scott and Jackson are on the road to Louisville as Jan is close to going home. Her breathing is labored but she is in no pain. Tricia asked for us to be in prayer for her father, John, her grandparents, Bob and Joyce McClain, and for her mother's peace. I would like to add that we prayer for the angels of comfort and strength to Tricia , Justin, Scott and other family/friends members who are losing a very wonderful, loving and beautiful mother, wife, daughter, sister, bridge partner, girlfriend, friend and soulmate. Prayers for Duncan's continued strength as grows stronger each day. May God's arms embrace them all with His love and comfort during this time.
Thursday, June 14, 2007
Grandma and Duncan
Jackson looking cute as ever
Grandpa and Grannie with Jackson
Moving on to Jackson. He had a big morning - his first outing in the world! We headed to his first pediatrician appointment, where his weight, length, and overall check-up was done. He is exactly 5 lbs. and is 18 inches long (Oh, by the way, Duncan is exactly 5 lbs too! In terms of weight/size these boys refuse to let the other win! Their weights have been in sync since birth!). That's 3 ounces above his birth weight and a quarter inch longer. Dr. McClellan, our pediatrician, feels that he is right on track. He will be monitoring Jackson (and soon Duncan) very closely, he said, due to their preemie age. We will be going to his office to get weight checks weekly. So, lots of field trips for the boys!
Thanks to everyone for their sweet cards and prayers. Wow, are we blessed!
I also want to let folks know about my mom. As mentioned before, she is currently at the Hospice facility in Louisville. For several days now, she has increased her sleep time to nearly full days and nights. Verbal communication is not happening and neither is eating/drinking. She is in no pain. We are all dealing with this as best we can. Prayers for my Dad and Grandparents, who are baring the weight of visits to the hospital and overall time with Mom the heaviest.
Monday, June 11, 2007
Both surgeons found Scott, myself, Ricci (Scott's Dad) and Becky Smith on the edge of our seats in the waiting room at about 3:15pm. They described Duncan's surgery as "text book -" everything went totally as planned. We let out HUGE breaths of relief!!!
We are both elated and exhausted. Two to three weeks of hard work lie ahead of us, as Duncan both recovers from the surgery itself, gaining his strength back, AND learns to feed. He has had no milk of any form since birth (receiving calories through an IV instead), so he has some catching up to do. We will be balancing care of Jackson here at home with visits to see Duncan at Children's Hospital.
Thanks to EVERYONE who has been praying and supporting us. We are happy to say that thanks to church, family, friends, and friends of friends, we have a refrigerator filled with meals, laundry caught up on, cleaning under control, and tons of prayers being lifted to God. I would like to extend a special thanks to our "Angels" who have been doing deeds of all kind to help out.
Moments after receiving the news, Scott and I start the phone tree!
Baby Boy Duncan only an hour or so post-surgery. He was squirming around, as usual!
The breathing tube comes out tonight or tomorrow... otherwise the only difference between pre-surgery and post-surgery is the white bandage marking the incision for his surgery. He's our little WARRIOR!
Sunday, June 10, 2007
Far Left: Jackson in his cute bouncy seat - THANKS Grandmom and Grandad!
Left: Mommy and Jackson reading their first book together
Also, Duncan's nurse yesterday allowed me to hold him ( Lynette, Scott's Mom, hung out with Jackson at home while we visited Duncan - Amy Avery from church popped by and got to babysit too!)! It had been last Sunday since I had held that precious bundle in my arms (different nurses feel less comfortable transporting him from the crib to someone's arms - so many tubes and wires and risk... but this one - Terry was her name - so believed in the power of the parents' touch, that she did us a favor!). It was WONDERFUL. And I mean to tell you, those two look alike for sure. The only difference Scott and I have picked up on is Duncan's chin dimple. Jackson's is much less prominent. You'll have to see for yourselves!
Wednesday, June 6, 2007
I need, first off, to thank my dear friend - Becky Smith - for helping keep up with the blog over the past few days. She did a wonderful job.
It is Wednesday morning and Scott and I are preparing to leave for the Hospice facility here in Louisville to visit Mom again. We had a REALLY great visit last night when we arrived in town. Mom usually does not have much physical or mental strength past the late afternoon and certainly not into the evening... but when Scott and I walked in her room at 8:00pm, she was bright eyed! It was a miracle to get that time with her. She had been waiting for us all day, according to Dad! So we showed her our delivery slide show on the lap top, and just talked about the beauty of our babies. She repeated, "Oh my goodness, all these babies!" several times, along with, "Can you believe it?" A couple times, she got confused about why they weren't with us! By golly, she wanted to see them in person! Grandmom, Grandad, Justin, Dad, and Scott and I were there for a good amount of time together. Then Grandmom and Grandad left and Uncle Barry and Aunt Charlene visited. It was so special. When we all headed out, around 10, Mom asked, "Where am I going?" I think she didn't want us to leave...
We are looking forward to another great visit, then will be heading back to Columbus by early afternoon. We miss our babies!
Tuesday, June 5, 2007
Tricia's family need your prayers as this is a transitioning time for her mother. We pray for safe travels, comforted hearts and love overflowing.
Monday, June 4, 2007
Sunday, June 3, 2007
They transported Duncan to Children's last night and Scott followed. He stayed until about 2:30 am and Grandma Decker arrived this morning. She was permited to gave him love by placing her hands on him for over 3 hours. When Tricia and Scott arrived at Children's they received a good report. Duncan is doing exceptional well. In fact, the staff says he is the best HLHS baby they have seen. The respirator was taken off around 3 pm since his O2 levels were at 100%. They will continue to monitor his lungs to prevent fluid buildup. Surgery is usually 3 - 7 days after birth. Either Monday or Tuesday the medical staff will determine the surgery date.
Once they took the respirator off, Tricia and Scott were able to hold their warrior. A picture will be forth coming.
God's blessings continue to unfold.
Jackson was born on June 2 at 7:27 pm and Duncan followed 12 minutes later. Duncan is at Children's Hospital on a respirator to help with his breathing. Tricia and Scott were going on a short field trip to Children's to spend some time with him. Tricia will most likely be released on Monday. Jackson will stay until he has a couple of feedings - maybe by the end of the week he will go home. Tricia feels good and Scott is glowing with only a couple hours of sleep for each.
Our lives will be changed by these two beautiful souls!
Saturday, June 2, 2007
As I sat with Tricia today, I took a visual tour around her room. I thought I'd share with you what I saw - her Bible next to her bed, her journal and "Double Duty" on her tray along with a 2 qt container of water, a stack of dvds and cd's, and two hand crocheted baby blankets. The beautiful baby blankets which Tricia's mother made are waiting the arrival of Duncan and Jackson.
Continue to hold the Arthur's and Johnson's in your prayers as we are thankful for reaching week 34!