I can't even begin to tell you how wonderful it is to be home. The culmination of the weeks stress and emotions was overwhelming and on top of that it was a bit of a challenge getting there. A two hour drive quickly turned into 3.5 hours. An accident on the highway had us exiting completely in order to reroute. Not what I was expecting for our first drive with Lucy. I was irritated beyond measure and Lucy's first feeding outside the hospital was in the back seat of Josh's car...which then made her less than thrilled to be put back in the car seat. The kids were so excited waiting for us to arrive. Josh's mom and friends had come over to decorate the basement with a bunch of welcome home stuff and had also coordinated with Jack and Ellie's teachers to have their whole class make cards. It was so sweet!
The hall is lined with cards from school friends...and paper snow flakes (Eleanor's favorite craft right now)
Well Lucy surprised us again. We were prepared to leave tomorrow and planning as such, until rounds today at about 10 when the doctors informed us we were good to go...TO GO! The belongings have been packed, Lucy was given her car-seat study, she is in a go-home outfit (we are going to have to dig out Eleanor's preemie clothes as she is swimming in newborn), and we are formally discharged.
There is one little hiccup, my car is not starting (thanks to a week of inactivity and the cold weather). Fear not, security is on their way for a jump start.
No more papers to sign, no more vitals to examine, no more procedures to administer, we are out.
Praise God from whom all blessings flow.
Praise him all creatures here below.
Praise him above ye heavenly host.
Praise Father, Son, and Holy Ghost.
Amen
car seat test, she looks okay to me
A friend of mine has Glow Worms for all her kids. They are so old school...I remember them when I was a kid. Friends of ours just sent us a wonderful care package! Including, of course, a Glow Worm! I absolutely love it and I'm sure Lucy will too so long as her older sister doesn't steal it :)
A couple days ago Lucy was weaned off from the morphine about the same time we started nursing. Instead of the morphine she could have Oxy or Tylenol for pain as she needed. I'm not sure if they were leaving it up to us to decide or not. I kind of thought, they would suggest or give it to her if they thought she needed. She would lie still and sleep in her bed or be content while nursing, but if you bugged her or on the transition between the two she was really agitated and unhappy. I feel guilty now not knowing it was because of pain...why wouldn't it be though, she had her chest cracked open 4 days earlier.
The way things work where Lucy is at right now on this progressive/moderate care level, all decisions about her care are made by the nurse practitioner not a doctor. Last night, after Lucy had gone about 36 hours without pain meds, our nurse practitioner advised us that we should definitely be giving Lucy pain meds and that her dip in oxygen and her fussiness when she was touched were more likely a result of pain in her chest that abated when she was left alone. He oxygen was low, because it hurt to take deep breaths. Why did they not tell us this down stairs?! Josh and I felt a lot of guilt that we failed to understand the pain that our daughter was experiencing and the simple measure to take away that pain...As soon as she was stabilized and alternating between pain meds, her oxygen was fine, and I even think the nursing became easier. The pendulum swings here because we know what it's like without taking the meds, but with them she is sleepier and rarely shows signs of hunger on her own. We need her to eat aggressively in order to gain weight and go home.
The roller coaster of emotions swung the other way this morning. We anticipated another boring day of waiting to see about weight gain, but today was a day of great joy. Lucy had her final echo and EKG. Everything looks great. Even the size discrepancy between ventricles has evened out just since her first echo last wednesday. Praise God! It seems like the only thing that we are waiting for at this point is the weight gain through breast feeding. Lucy and I continue to work so hard at success and we are knocking on the door of discharge. All of her umbilical lines and pace wires have been removed, and there is no IV in her arm...we have a virtually untethered baby. Lucy also had her first bath (other than just being wiped down) and we were able to scrub a lot of sticky residue off. To top that all off, she is wearing one of our own onesies...starting to feel more and more like a normal baby.
Pacer wires and umbilical lines were pulled...everything is coming out.
Final echocardiogram before discharge.
Bath time.
Nice and clean mama time with a wire-free baby.
You would think she would be happier to be wearing clothes for the first time.
We were blessed to have some friends visit us tonight and bring us dinner. Our support network continues to be a blessing from the Lord.
Right now, our nurses and doctors are in the midst of preparing us for the celebrated event of discharge in the next few days. While we have an overwhelming sense of relief and joy, those feelings are not exclusive. In the midst of all of the stories we have seen and heard up and down the hall, we are left to wonder if we should feel lucky, blessed, guilty?
Earlier this week, we met a patient's grandmother (wearing a Rockford Ram sweatshirt). She told me about Devon, her grandson who was 13, has been in the hospital on and off for years, and is now waiting for a heart transplant. Devon's grandmothers and mother have made being here part of their normal routine and all that Devon can talk about is hockey and yesterdogs. I met another father over at the Ronald McDonald house who had a 3 year old son AJ who he and his wife had adopted from China (one of 5 adopted kids in their family). We had seen AJ up and down the hallways in a wheelchair as he is recovering from his second of 3 planned surgeries, which the father let me know was not a successful repair and would probably have to be redone after he has sufficiently recovered. I met a father whose wife went into labor at 24 weeks and was probably going to lose his first daughter. My heart broke for these people. Why are we preparing for discharge while they are preparing for future surgeries, complications, or funerals?
We are so blessed by God to have had the outcome we have had and the seemingly miraculous recovery that has doctors and nurses around every turn saying to us, "she had surgery how long ago?" Why us and not Devon or AJ? The answer comes back to John 9 which begs a different question.
"Walking down the street, Jesus saw a man blind from birth. His disciples asked, 'Rabbi, who sinned, this man or his parents, causing him to be blind?' Jesus said, 'You're asking the wrong question. You're looking for someone to blame. There is no such cause-effect here. Look instead for what God can do. We need to be energetically at work for the one who sent me here, working while the sun shines.'" (Verses 1-4ish from the message).
I pray that Jodi and I can be energetically at work for the one who sent us here. I pray that Lucy can be energetically at work for the one who sent her here. I pray that God's will is done and glory is brought to his name through what he is doing with Devon and AJ and all of the other stories found up and down these hallways.
At noon today we were told there would be no beds available on the next floor for moderate care...bummer. It wouldn't really change the things happening for Lucy, but maybe just make Josh and I more comfortable...a bathroom in the room :) I was getting really sick of walking down the hallway to pee every hour especially in the middle of the night. A few hours later, the nurse popped her head in and said pack up, you're moving, "they miscounted the beds"
Really?! They miscounted beds?
Thanks Lord.
I didn't know what to expect for moderate care. I was so used to nurses changing all the diapers, passing her to me from the bed to the chair for nursing, swaddling her. etc... Well, it is clearly our turn to start caring for her ourselves...And nothing says normal like Josh and I changing her diaper together around all the lines. Everytime we would stick a clean one under her, she would poop or pee again! Four diapers and many wipes later, I think she's cleared out. I love these moments as reminders that very soon we will be home doing all the normal baby stuff.
As of now Lucy is weaning off oxygen and airflow and making sure she is gaining weight through feeding. Pray with us specifically that Lucy will do this well. Since she is still recovering from surgery she uses a lot of energy and calories to eat. The problem would be if she uses more calories than she is taking in. This is really the last major step before coming home. We are anticipating only 2-3 more days if all goes well.
I meant to post yesterday, but it got to be too late...
To be honest, it was a bit of a boring day around here. I am grateful to have slept relatively well here the past 2 nights with Lucy and she has made leaps and bounds of progress.
Overnight (Monday into Tuesday) she started with breastmilk through an NG tube (in her nose, straight to her belly) and her stomach tolerated that really well. In the morning during rounds I asked her doctor if it was okay to start nursing and he gave me the go ahead. Not only did he say I could try, knowing I didn't want her to have bottles, he stopped all NG feedings and said I could breastfeed exclusively for the next day and assuming it goes well, continue.
So that's what we did. Nursing and feeding was probably my biggest worry going into this whole thing. I may have even indicated it was more so than the surgery itself. This is just another one of those answered prayers that you don't have to wonder about. Like Jesus whispering in my ear, "Yes, you and Lucy can do this...here is my blessing poured out on you."
Fast forward to this morning...
Meeting with the doctors during their rounds, they were very pleased with how Lucy is doing. She is even kind of baffling them because they never have a nursing baby in this unit. Everyone keeps saying she should be upstairs (we're just waiting for a bed to open up). As a trial run, Lucy is off any and all meds or nutrition for the day. They want to see what her levels, output, etc. are if treated as a 'normal' baby. Praying now for a good day of nursing! No one has mentioned a discharge day, but I'm confident it's coming really soon :)
We are continually offering thanksgiving to our God who alone is at work in Lucy for healing.
"Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful" Colossians 3:15
but God is the strength of my heart and my portion forever"
Psalm 73:26
Praises! Late this afternoon she was ventilator free, I love to see that beautiful face.
It is something short of a miracle what these doctors and surgeons can do for such a tiny little person and this week we have witnessed many of our own answered prayers and little miracles. I wanted to share just a simple story of how God answered one of our prayers today...
I tend to be a light sleeper and that's part of the reason Josh was sleeping in the bay with Lucy while I slept down the hall at the in house Ronald Mcdonald rooms. This afternoon we knew we would probably have to move across the street to the other House. With Lucy still in the bay and not a private room I was more than a little concerned how I would handle that. (I considered it not an option for me to go across the street by myself and the thought of not sleeping a wink in the bay was terrifying) The nurses had also told us there was currently not any rooms available and hadn't any idea when that would change. As the social worker walked away from our conversation I stood up moving towards Lucy's bedside and said to Josh, "well I guess we'll just have to pray that somehow she gets her own room tonight." Lucy's nurse had been helping another patient and so we met back at the same moment. (We had previously been at lunch and so hadn't spoken to her since returning) No joke she looked at me and said with a big smile, "we're moving her at 3"
Now that was an answer to prayer! Technically, I hadn't even prayed it yet :)
Just another testimony of his goodness to us.
So tonight I sleep with Lucy as she breathes on her own.
Since the surgery, Lucy has been located in the "bay", an open area that services about 10 beds of the more critical patients in the PCTU (pediatric cardio-thoracic unit). There was no way my wife would be able to sleep in that area overnight and only one of us could sleep in the single bed in the Ronald House in the hospital. You all know what that means, I was sent to sleep in the chair-bed behind my daughters setup in the bay...little did I know that would be the best thing that has happened in a while.
There is something to be said about the nurse hangout time to be had overnight. I learned about a scandalous circumstance at a hospital in Flint where a nurse is suing the hospital for discrimination (and got to listen to the scheming of how they could find that golden ticket...I found out about their girl-scout cookie preferences...who felt good about eating donuts...Bella and Branson the dogs...Leanne and Izzy splitting the weekend shifts...and most important, the unreasonable demands of the hospital come Christmas. To have seniority would be sublime :)...
All in all, we are so glad that Lucy has some privacy so that Jodi can feel comfortable sleeping in with her and pumping bedside, but I am sure going to miss being one of the girls...sometimes, I fear I am too good at it.
In general I like girly things...but for me there is definitely an 'over the top'
Last Wednesday after birth as Lucy and I were each settling into our own rooms on different floors, Josh was juggling a bit between us...mostly staying with Lucy, and giving me updates when he could. Before I had the chance to go up to her room, Josh called and said "The nurse wants to know if you'd be okay with a little fluffing?"
"a little what?" I said
Apparently some of the nurses like to make bows for the girls and place them about. When they have no clothes or otherwise external way to tell if it's a boy or girl, I think they like to doll them up a bit.
So when I finally got up to Lucy on Wednesday night, I was a little taken aback by the giant pink octopus look thing on her head...I think this first one fell on the floor by mistake and had to be thrown away quickly.
simple and sweet
Five days later she still has some fluffing, but it's a little more modest. This is our current favorite, made by one of my favorite nurses, Leanne.
Where yesterday seemed to be more about the numbers and invisible milestones, today was much more about the visible! It all started this morning as Lucy started to lose some of the hardware. First the catheter came out and then the dressing was taken off her chest. All she has are some steri-strips over the incision. It looks great. If that were all, we would still feel great, but istead, tons of other stuff happened too.
The respiratory technician had been giving her Nitric Oxide to help calm down some of her breathing and they were able to wean her off of this. Her oxygen infusion levels have continued to drop from the ventilator and are down to 40%. At 7 o'clock tonight her chest tube (for drainage) came out too.
In recent years, Josh and I often like to talk and boast about our running times and accomplishments with one another. It's no surprise that one of the best milestones of Lucy's day is sprinting. Sprinting involves practice sessions of breathing without assistance from the ventilator. Our little girl did great (although she needed some reminding to wake up and not sleep through her breaths). From what we understand, 3 successful sprints and she is able to be extubated. She just finished sprint #2 and she did great! The next one will be around 3am. Hopefully then the tube comes out in the morning!
We are so grateful for the steps forward and can't wait to see what tomorrow holds. Thanks for continued support and prayers. We are unworthy of the attention and support we have received. May God continue to bless Lucy and her heart.
At first glance of Lucy at the end of the day you might think she hasn't made much progress. A little discouraged myself I asked the nurse the same question about an hour ago. Boy was I was wrong. Even though no tubes came out she's dropped a med here, added another there and all those numbers on the machines are changing...
She started the day at 100% oxygen infusion and is now down to 65% (our natural air is 21%) so she's making progress and moving towards breathing more on her own. I think the catheter might come out pretty soon too...whoever thought we would be excited about changing diapers :)
She tolerates being touched much better than she did yesterday and it's the little things like putting on her own socks that make us feel like we're getting somewhere.
Keep those lil' piggies warm and we'll see what tomorrow holds.
"Be still before the Lord, all mankind, because he has roused himself from his holy dwelling." Zechariah 2:13
Today continues to be a roller coaster as we wrestled with care for Lucy and our changing living situation here as Jodi was discharged. Our best case scenario of staying in the in-house Ronald McDonald House (the same floor as Lucy) is happening and we are slated to be here until Sunday evening, then another round of uncertainty will develop.
As for the littlest patient, we have been able to spend some time bedside and she is doing as well as can be expected. She has a breathing tube and is breathing off of a ventilator. Mainly, the only meds she is dealing with right now are morphine for the pain and something that they have been intermittently giving her for stabilizing her blood pressure. Her left lung did seem to collapse somewhat in the surgery, but in the hours since has greatly improved. There is still no set timetable for how quickly steps will be taken, ventilator turned off, central line removed, food given, etc., but we are trusting in the great knowledge and experience of those around us.
God continues to remove worries and concerns and grants us the opportunity to talk to other families at the hospital and learn about their situations as well. We continue to pray for strength and perseverance as the irregular (and reduced) sleep schedule and long days are starting to catch up to us.
We miss our other kiddos and have been blessed to have a few visits with them today, but they are heading back to GR tomorrow AM. Pray that they are able to maintain some normalcy in their days. They have certainly taken to the newest Goad and will be anxious to get at her as soon as they can.
I continue to be encouraged by a song I have been listening to by Josh Garrels...the song is titled Farther Along...I have posted the lyrics below (they are long to read but totally worth it, and I posted the video of it to follow)...
Farther Along we'll know all about it
Farther Along we'll understand why
Cheer up my brothers, live in the sunshine
We'll understand this, all by and by
Tempted and tried, I wondered why
The good man died, the bad man thrives
And Jesus cries because he loves 'em both
We're all cast-aways in need of ropes
Hangin' on by the last threads of our hope
In a house of mirrors full of smoke
Confusing illusions I've seen
Where did I go wrong, I sang along
To every chorus of the song
That the devil wrote like a piper at the gates
Leading mice and men down to their fates
But some will courageously escape
The seductive voice with a heart of faith
While walkin' that line back home
So much more to life than we've been told
It's full of beauty that will unfold
And shine like you struck gold my wayward son
That dead weight burden weighs a ton
Go down into the river and let it run
And wash away all the things you've done
Forgiveness alright
Farther Along...
Still I get hard pressed on every side
Between the rock and a compromise
Like the truth and a pack of lies fightin' for my soul
We were just told Lucy is out of surgery and is in recovery. Everything seems to have gone well and she is off of bypass. We were expecting the surgery to take until noon or 1, but she is already out (11:00). The surgeon swung by to give us the run down. Now we wait to see her and watch her recovery post op. She will be on a ventilator for a few days...
More updates soon.
Thanks for the blessings and prayers for us and on our behalf. God continues to sustain us with strength, peace, and confidence in the midst of this.
Today was a great day with lots of time with our girl and the rest of our family showing up to meet her. Lucy was full of surprises today as she showed us her beautiful open eyes...saved a messy diaper for daddy...and snuggled into Eleanor and Jack's cuddles.
In John 1:3, we are told that, "Through him (Christ) all things were made; without him nothing was made that has been made." God does not make mistakes. Lucy is in this situation by God's design and his plan for her life is unfurling before us. Continuing that passage in verses 4 and 5, " In him was life, and that life was the light of all mankind. The light shines in the darkness, and the darkness has not overcome it." It feels dark now, tomorrow AM is the surgery, sooner than we expected it, but exactly as God planned it. We are filled with worry now and are concerned for her health and care in the morning, but have been called to cast all our cares on Christ and lay our worries at the foot of the cross. "The light shines in the darkness."
We did get some specifics on the surgery...they will be going through the chest and putting a patch the length of the arch on the aorta. They will be taking her away in the morning around 7:00 and the surgery should be around 8:30 and we will hopefully be able to see her sometime midday (the actual surgery should last 2-2.5 hours. Pray with us.
At 9:30 this morning we welcomed Lucy Loraine Goad. She weighed 6lbs. 9oz. The perfect size if you ask me. She let out healthy cries putting us at ease right away. After a quick check I was able to hold her for a little bit while being stitched up. Soon enough they gathered her up and she was taken for her echocardiogram and to get her IV and central umbilical lines in. Josh stayed with Lucy most all of that time. The initial report from the echo and the cardiologists was that they were still seeing the coarctation that was anticipated. Since then, we've talked some more and it sounds like surgery is planned for Friday. It's a little earlier than we expected so we're a bit flustered right now, but looking at the big picture I'm glad to get things moving. My parents will be coming with the other kids tomorrow so they can see her before surgery instead of waiting until the weekend.
Thank you, Thank you, Thank you for all the prayer today! We've appreciated the many calls, emails, texts, and support from so many. The body of Christ has been with us in a way that is faith-affirming and continues to push us to pursue the calling Christ has for us, to be focused on and committed to God's will and to demonstrate the joy we have through his grace on us.
Just one more night until we get to meet this little girl, this alien like thing (as Josh sometimes calls her) that makes the skin on my belly jump, roll and move like something totally unnatural :)
It's been what seems like a long time coming. Always still a few months, weeks, or days away but now it's here and we are so excited.
The past few days have been filled with conversations at church, school, work, bible study, chance meetings, etc... Always someone giving us well wishes, written out words from the Lord, and telling us how much we are prayed for this week! We genuinely feel covered in prayer from near and far. We are so richly blessed and I almost feel near overwhelmed.
I have been studying James this year and I find it no coincidence that my study lands me looking at the latter verses of James 5 over the past week...talking about the perseverance of Job and the prayer of faith. From the beginning of all this last October Josh and I have always stated that this is His story to tell and as a friend recently reminded me, "we don't get to write our story, we just get to come to peace with it."
Here are some words from my study that resonated with me today:
"Our sufferings etch engraved invitations to intimate places with God. A pair of hands clasped in earnest prayer is the best means we have this side of Heaven to hang onto Jesus for dear life. Fellowshipping with Christ in our suffering guards it from purposelessness...Prayer can prime the well of our souls to a bath of His beautiful presence." Beth Moore
So, as we journey into the unknown of the next few weeks I find myself just resting in the purpose and plan of Jesus.
God knows how everything will turn out. And, for every single person who belongs to Him, it turns out well.
"I know that my Redeemer lives and that in the end he will stand upon the earth. And after my skin has been destroyed, yet in my flesh I will see God; I myself will see him with my own eyes- I, and not another. How my heart yearns within me!" Job 19:25-27
Thank you dear friends for lifting us up and walking through these circumstances with us.
A couple weeks ago we finally had some snow that stuck. Jack was having so much fun in the backyard sledding while standing and so we said...You're uncle Scot needs to teach you how to snowboard! And so, three days later My brother taught both Jack and Josh how to snowboard on a small little ski hill. The same hill that Josh learned how to ski on over 20 years ago! Scot was a great teacher and they had so much fun. I hope it's something they get to do more of.
And then I realized we hadn't taken any snow pictures yet this year. It's harder than you think when the lens keeps fogging and the snow flakes are falling on it etc... but I think there are some cute ones.
I love when you can see the different personality in each one of them
