Three months almost seems like a blur...of the day to day. What stands out is three months of God's grace, goodness, and blessing on our family and this little one of His.
Just needing to catch up on posting these pictures
Can you see the fullness on the top her head here? I took this picture the day she was admitted for the shunt placement.
Lucy is always full of smiles and loves to talk and coo. She loves her Mama as she is not nearly as animated with Daddy. Enjoys sitting in the Bumbo now too and being off her back.
Over spring break I took the kids to see my Grandparents. I meant to post these pictures last week sometime and then our little Lu demanded some attention :) Even though they live in town, we really don't go to visit very often. It was the first time for them to meet Lucy and it had been a really long time since they had seen the other kids too. I love this picture of them with four of their great grandchildren. This is my Dad's parents, Carl and Virginia.
Josh's grandparents also stopped by that week to meet Lucy for the first time. This is Loraine who Lucy is named after.
27 hours after they picked us up to take Lucy down for her surgery, we were discharged from the hospital. Lucy is so strong and we are so grateful for her resiliency as she recovers from her second major surgery in the first 9 weeks of life.
Words alone fail to explain the complete roller coaster of emotions that we have felt in the last few days. Exhaustion, panic, hope, fear, relief, love, thankfulness, frustration, peace. None of those words tell the whole story. Maybe the only word that comes close is grace. God's grace has sustained us in our weakness. Where we have had no strength, he has been strong for us. Where we have been confused, frustrated, angry, he has been peace for us. We are unworthy of all that God has called us to be and unworthy of the blessing that Lucy has been to our family.
We are certainly not out of the woods yet. 8-10% of shunt repairs see some sort of infection that involves a follow-up procedure and 50% of shunts fail in the first year and need a corrective intervention to be made (that percentage jumps to 60 in the first 3 years). Lucy will have an additional surgery in another 8-9 years to lengthen the drain tube further into her belly.
Pray with us for continued peace. Pray for rest. Pray for keen eyes to watch for warning signs of the infection and possible shunt failures.
Below are a few snapshots of the last few days (phone pictures only in our unpreparedness)...
Just after surgery, still in recovery
So, a lot of people have asked what it looks like...everything is internalized. You can see the shunt protruding above her ear and from behind her ear there is a very small tube that runs along the side of her neck and down the front into her belly cavity where the fluid is then absorbed back into her body.
a few hours after being back in the room we noticed this jar inside a baggie at the end of her bed. "What is this?" Josh said
Oh, her hair...totally didn't cross our minds that we would have any interest in saving this. Technically I guess it was her first hair cut :)
Here we are, ready to go home...24 hours after brain surgery. Is that crazy or what?
We are so blessed!
Rejoice in the Lord always, again I say Rejoice. Amen.
Lucy came out of surgery around 12:00 and we were able to see and hold her shortly after...so different than the heart surgery. Good news, there were no foreseen complications during the surgery. She is sleeping peacefully now with a bit of morphine. As soon as she is a little more alert I'm sure she will be ready to eat!
Pray specifically that she doesn't develop any infections in the next few days and week and that there would be no other bleeding or residual affects of the surgery.
Jack might be a little jealous of the mohawk she has from the shaving of her hair :) I'll try to take a picture to show just what the shunt looks like from the outside. Once her hair grows, it will be hardly noticeable.
Thank you friends for praying for Lucy with us today!
Last night, Lucy had her 2 month appointment with her primary care doctor and he was concerned that her head seemed to have grown more than it should have in the weeks since our last appointment. He ordered us an ultrasound downtown at the children's hospital. We came to the hospital, nervous, but not too concerned. During the ultrasound, they identified a buildup of fluid on the brain that was causing the head to swell. This is technically considered hydrocephalus and can be very serious if untreated. Our doctor was on the phone to us moments after the ultrasound and had us admitted overnight. In the whirlwind hours since, we have had a CT scan on Lucy's head, echo cardiogram on the heart, scattered a few hours of sleep over night for us and Lucy, and she is currently in surgery. Her surgery involves going into the brain to place a shunt that will drain into the belly cavity. This shunt will stay with her as she grows.
The neurosurgeon explained tons of risks and possible complications. It sounds like the shunt itself has a 50% failure rate where follow-up procedures are generally required (less invasive than this procedure). 8-10% have infections that could develop days to weeks after we leave the hospital. We will be given a ton of warning signs and instructions to review and watch for.
Please pray with us. Having 4 months to prepare for the heart surgery was a blessing looking back. We are overwhelmed. God has a plan for our daughter and for our family. We pray that we can live the story that the Lord has for us. Give us strength, Lord. We pray for wisdom for doctors, surgeons, and caretakers. We pray for our ability to pay attention and remember the things we need to remember as we are inundated with information in the next 48 hours as we are working on almost no sleep. God has chosen symbolically and literally to use Lucy's heart and mind to help shape ours. May we bring glory to God, who sustains us when we are at our weakest.
Lucy's recovery should only be a few days at the hospital, we are grateful for that.
We had a wonderful weekend celebrating with family what our savior has done and that he lives today!
By the time I thought about taking pictures it was after lunch and Max had ketchup all over his shirt. I new there was no chance of getting all four together so Josh grabbed the boys and we took a few pics really quick...and since I'm usually the photographer I forgot to jump in one myself.
I dyed matching fuschia shirts and made circle skirts for the girls. Eleanor was sooo excited about matching her little sister. She kept giggling too at the seriously small size of Lucy's skirt that would surely fit on her American Girl doll.
Lucy has the honor of sharing her middle name with Josh's maternal grandmother. Loraine is a wonderful woman of God and we look forward to sharing with Lucy as she grows all the reasons to be proud. Loraine shared with us a letter to Lucy as she anticipates meeting her hopefully in the coming month.
(3 weeks old)
Dear Little Lucy Loraine,
I am so anxious to meet you face to face. I smile everytime I look at one of the pictures of you that Mommy and Daddy put on their blog. You are so cute and your eyes are so big and bright! I just want to kiss and hug you!
I trust you are growing and eating Mommie's good milk and staying away from any germs that seem to be around this time of year.
I am so proud to have you carrying on my name. My heart was blessed and thrilled beyond measure when your daddy gave me a letter telling me!
Maybe when we come to GR in April grandpa Chuck & I will be able to see you. You will soon be one month old. WOW!
I love you dearly and so excited to meet you face to face! We are still praying for you daily and your parents and siblings. You have such a wonderful family to love and care for you.
Before we left for Ann Arbor two and half weeks ago, some friends from school gave me a large tote filled with stuff to bring along. It had all sorts of fun stuff from snacks and drinks to gift cards, magazines, etc. One thing included was a large plastic cup with straw. Part of the design was the word Trust and the reference to Proverbs 3:5
"Trust in the Lord with all your heart and lean not on your own understanding;"
I was surprised to see that a big hospital like U of M did not give out great water bottles or something to all their postpartum patients (like in GR). So I carried that cup with me everywhere. Drinking water all the time you would rarely see my hands without it during those 10 days.
We have been home just over a week now and I'm still filling that pink cup multiple times a day. More importantly though I'm reminded constantly of the words it references...Trust in the Lord!
I was ready to be home and understood some of the challenges it would hold just integrating back into life with the other three kids, school, laundry, Josh back at work, etc. I was however unprepared for others. Tuesday afternoon we had Lucy at the Pediatrician and she had lost a full half pound just since leaving the hospital. The Doctor was not terribly concerned but knowing the emphasis that the hospital was putting on her weight gain even for discharge, left us feeling like complete failures. Especially me who is the one providing the food and calories. I started to believe the lies of inadequacy and wept as I held my little girl who had clearly lost that half pound...not noticeable until pointed out. She was scrawny!
Start Wednesday morning I'm not feeling well; chills and body aches all day long. Knowing it wasn't the flu, how did I not think of it until after 5 o'clock when the doctor's office is closed...Mastitis. Here's where my amazing husband swooped in and did everything for two days. I barely had enough energy or emotion to do anything but hold and feed Lucy. After a shot of antibiotics I was feeling much better.
Friday morning Lucy had a follow up at the cardiologist. Everything still looks great, we head back again in a month. Good news was she had gained two ounces already since Tuesday.
Challenges of this week come and gone I know there will be more to come. We "Trust in the Lord with all our hearts" and know that he is Good!
The kids both wanted printed pictures of them holding Lucy to bring to school
Oh yeah and throw into everything Max dumps the chocolate milk mix all over the floor. The way he said "uh-oh" was priceless :)
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.
