Monday, July 21, 2014

wondrously home...

"God thunders with His voice wondrously, doing great things which we cannot comprehend...whether for correction, or for His world, or for loving-kindness, He causes it to happen."  
Job 37:5 & 13
"See bebe' Jude!" Those were the sweet words of a bubbly two-year-old bursting out from the middle bench of our family van as we exited the hospital parking garage with our newest little bundle Friday afternoon. 

Just hours earlier, we were overwhelmed with sheer excitement as we arrived in the NICU. Seems like everyone knew, except for us, that we were being discharged that day! As we approached Jude's pod, doctors were eagerly gathered to deliver our departure instructions.
It felt surreal. Suddenly, I had mixed emotions that paralleled a day just nineteen years ago when we were leaving the hospital with our first born. Disbelief overtook me that I could be taking her home, so unprepared for the task ahead. We had no special training for rearing a child or even keeping one alive for that matter. There was no exam to pass or questionnaire to fill out...not even an interview to prove we were capable. So it was with Jude. All of those familiar feelings came rushing back.

Paul hadn't even taken the test to insert the feeding tube, but shortly after arriving, he passed and was approved. We packed Jude's supplies and barely had him buckled in his seat before we were off down the hallway, never to know that place again. It was like a strange postpartum moment saying good-bye to Jude's first home, to the dear nurses and doctors who had so warmly become our friends.

Moments after arriving back at the apartment with all in tow we were greeted by some sweet Suffolk friends. In the neighborhood park, we all enjoyed watching Jude take in his first breaths of fresh air while soaking in the warmth of the sun. An hour later we were packing for home. Well, everyone with exception of me that is. I could scarcely take it in. For the following two hours I sat nestling our baby boy like any new mama while the others loaded the van. I was  unconscious to the fact that they packed the flatware with the underwear until the following day.

It was a long night pumping, feeding, and tubing but as a team we made it through. By Sunday morning Jude was ready to abandon the feeding tube. He was horking down every meal. It was quite a morning to share as we were all elated to be headed to Sunday morning services with our sweet boy. 

I will express my disappointment, however, since twice already we've been referred to as Jude's grandparents in check-out lines. I'm pretty sure it is Paul who is causing them to stray off course because of his head full of gray hair. He has been with me on both outings. So, as time goes on, we'll see how this pans out. For the time being, I don't plan on venturing out on my own, just in case)

We feel grateful beyond words to be given such a precious blessing. So much we cannot comprehend...  ~Jen    

Wednesday, July 16, 2014

teach me, o lord...

"Teach me to do Your will, for You are my God; Let Your good Spirit lead me on level ground. For the sake of Your name, O Lord, revive me."
Psalm 143: 10-11

We're SLOWLY making progress. I've delayed to update due to the amount of time we're spending at the hospital. Our family life has become much more accelerated due to the consistent need Jude now has for us.
Jude has moved from critical care to intensive care! He even relocated to a new pod with built in cabinets! This is truly an upgrade to a born organizer mommy. He also graduated to his own crib that could fit eight Judes. When it arrived, it was like a dump truck moving through the NICU. 

As of yesterday, Jude has completely weaned from all narcotics but entering the cranky, withdrawal stage. The weaning happened much quicker than expected. It has required our time at the hospital to be more intense however, due to the amount of time it takes consoling him. He is much more alert now and isn't as easily settled.
Since Jude is learning to eat, I'm thankful I researched other CDH blogs in advance. This stage is a bit discouraging. Paul didn't read the blogs and thinks a few feeding delays shouldn't retain us from coming home. After all, ten grand a day seems a tad steep to learn to eat! I think his overbearing attitude has some of the nurses a little nervous. I'm still carrying the mindset that any good mom can get her baby to eat efficiently with a little extra work. But we're both actually beginning to grasp what is really happening.
His feeds are being advanced 5ml every 9 hours. This is proving arduous for Jude. If the feed isn't completed, he's tube fed the rest. It's an uphill battle in every way. He is struggling to keep with the program by tiring quickly. CDH babies must work especially hard to simultaneously suck, breathe, and swallow. He has tachypnea which is a condition of rapid breathing due to the diaphragmatic hernia and only one cooperating lung. Vomiting three meals in the past 24 hours is contributing to some weight loss. He hasn't reached the goal of 75ml that would allow him to begin growing.

Since the NICU doesn't stock outfits to fit 9lb babies, Paul and I do frequent Target runs to purchase more snuggles for Jude. It requires real science to consider which items will fit him best considering exit routes for all of the wires connected to Jude. The zipper has to work from top to bottom etc. We have quite the variety of outfits at home but never anticipated needing them so soon. It's no picnic to spend $20 on one article of clothing when I've been spoiled by the 50 cent yard sale bargains!
Heaviness defines spending most of the day until the late night hours in a cold pod with your baby instead of enjoying him in the comfort of your own home. It's complex to manage seven tubes and wires hooked to your little guy as you move, feed, and coddle him. Though all of our nurses have been exceptional, it isn't rational to a mommy's nature to say goodbye every night. At the end of the day, we are left without much strength, in desperate need of rest and reviving.
Due to Paul's eagerness and overzealous ambitions, there is discussion of bringing Jude home with a feeding tube and continuous night time feed pump. Though discharge is still some time away, last night we had our first lesson on inserting the feeding tube. I tried my best to prove I was capable but the uncomfortable procedure nearly overpowered this postpartum mama. Zoning a couple of times, I attempted to keep my personal emotions at bay. I'm secretly hoping that Paul will master this without my help once we arrive home. 
Despite the slow feeds, the mood is much lighter now and we can't express the gratefulness we feel that Jude is progressing so well. As we've come to know the doctors and charge nurses, we've become grimly aware of the sheer reality of what we've been spared from. Before Jude's birth, the NICU unit was intensely preparing for him. These babies are always very sick when they arrive. It is a stressful balancing act to keep them critically stable. Only one out of two survive the early weeks. The last CDH baby was discharged six weeks ago at the age of 8 months to live in a nursing home, never to know life apart from the ventilator. Out of all the CDH babies who survive, their morbidity is high. They have life-long problems if they survive infancy.
We are all beginning to feel anxious to get on with life outside the NICU. It is a doleful place and we've seen many a weeping parent. The suffering we're witnessing is establishing a new perspective for our family. It has influenced us all. I have even felt guilty at times to have such a "healthy" baby in comparison to so many others.
We don't feel like Jude is alive due solely to all the prayers of the saints, though we'd never refute the power of prayer. We don't agree that Jude is alive because the Lord has a special mission for him. Scripture states the Lord ordains the days of all of our lives, having purpose for each of us whether we live three days or eight decades. We certainly know better than to claim the Lord has favor on us, knowing we are the least deserving. So we won't waste a minute trying to figure out the mind of the Lord but we will give thanks to Him who is the creator of Jude's life and praise Him alone for His goodness whatever the outcome.  Forever  learning... ~ Jen

Thursday, July 10, 2014

singing praises...

"I will sing unto the Lord as long as I live: I will sing praise to my God while I have my being. My meditation of Him shall be sweet: I will be glad in the Lord."  Psalm 104:33-34
The last couple of days have emerged in hope. That little one, who just a couple of weeks ago had only a 50% chance of surviving, it is indescribable to express this mommy emotion that joins his newborn cry. Simply precious.
Monday, once the doctors' rounds were completed, Jude was extubated. His ventilator was removed, skipping two additional steps, leaving him breathing on his own. He seemed to be well pleased with the new arrangement and even sported a few smiles. It is much more settling to witness his sobbing now, as it resembles any newborn. There's no more tape covering that sweet little mouth, so mama and daddy have kissed those little lips too many times to count!

Some amazing news: The surgeon explained that Jude's left lung will continue to develop until the age of nine or ten with the majority developing by the age of two. It is inconceivable to imagine a boy born so impaired is now nearly complete in his anatomy. We are so blessed.

His chest drainage tube will be removed today. This means, in just a little while, we will  be holding our baby for the very first time! This will ease all of us  in many ways because, as you could imagine, it is discouraging to see him in a continuous lying down position.
The next phase will consist of learning to eat. Of all the CDH blogs I've read, I haven't found one CDH baby who breastfed from mama. I pray it can be different for Jude but I'm trying to keep focused on what's most important. It's just this pump and I haven't been getting along.

Some serious side effects came along with the blood thinning injections I was prescribed, so yesterday we made the decision to discontinue them. We are praying for the Lord's protection against blood clotting in my body. I'm hoping to regain some strength in the next couple of days.
Now that the life threatening crisis with Jude has passed, I'm  allowing myself to think of bringing him home. These are thoughts I haven't given myself the privilege to entertain since his diagnosis. It's overwhelmingly joyous to consider having this little guy rambunctiously jumping on all of our furniture, mischievously stealing the girls' cherished baby dolls, and cuddling with mama the rest of the day (yeah, right!)!  I can hardly wait to have one more rowdy boy to fill our home! I feel like the most blessed mama in all of the world!
We'll post some more pictures in a bit. You'll agree that he is just so handsome without all of the tape and swelling!  ~Jen
...and let the God of our salvation be exalted!

Sunday, July 6, 2014

his loving kindness...

"You, O Lord, will not withhold Your compassion from me; Your loving kindness and Your truth will continually preserve me." 
Psalm 40:11
I've turned into a "mushy mess" with tears trailing all over the place as Jude has endured three intense days. He is recovering well but obviously exhausted from all of the discomfort, poking, and pricking.
A PICC Line has been inserted along with other IV's to replace failing ones. One IV has failed on three occasions because his veins continue to collapse. Another should have been removed three days ago to prevent infection but due to the challenge, it is still in. His skin tone has changed from that beautiful pink baby color to a pale, yellow, peaked color. 
It is heart wrenching to see him with dried up blood along with so many wires dispersing from every part of his little body. Some lines didn't work correctly so others were made to replace them and, oh, how this all just makes a mother melt!

Withdrawals from recent additional dosages of narcotics (called boluses) are setting in. Tremors and fits are  frequent making it difficult to judge when to administer additional narcotics or to allow him to suffer it off. He's no longer in the mood for those cherished wake-times. Hard to digest.
Late last night, as I returned from the mother's lounge, I found Paul working intensely with two other nurses giving Jude a bath, changing his linens, and working on his "cares." I noticed his dirty sheets laying on the floor and I placed my hands over my mouth. The sobbing began as I expressed how I wanted those sheets! Paul immediately embraced me. On another previous evening,  I had restrained myself as I noticed them on the laundry heap. The same emotions washed over me then but I had managed to remain focused.

The nurses immediately identified my grief as though they had witnessed this many times before so suddenly, a container of "scent hearts" were in front of me. I picked out two hearts; one to be placed against my skin and the other under his head. Each day we'll switch the hearts so I can savor his scent and he can have mine. I just imagine that sweet elderly lady tenderly making those hearts right now. May the Lord graciously bless her for what she has selflessly blessing me!
At one point the nurse hurriedly thrust through the emergency door returning  with a large home-made blanket. She informed us that once there's word these blankets arrive and have been laundered, the nurses scatter to retrieve them quickly, sometimes grabbing an extra to "hide" for later use for the baby they're caring for. Again, I pondered over what these church ladies had done. Do they have any idea how grateful we are for such special blessings?
The pictures from children and special items are collecting on Jude's pod wall, so sweet and cheerful. Yesterday we arrived to find a 4th of July footprint card the nurse had made for us. Only Jude's card had two right footprints due to the wires protruding from his other foot....kind of cute!

Everyone who has sent text messages, emails and cards , called, and come for visits, and those of you who are praying, you've been a breath of fresh air. Some of our Community Baptist friends were able to visit us for a couple of days, helping us in many ways. Their presence here made us feel so "connected" again. Even sharing the blessing prior to lunch was extra special.
I'm growing relationships with two of my own nurses and four NICU moms who are all keeping in touch with us.  They've been such a blessing from the Lord. Please say a prayer for my new friend Amanda as she is beginning to be receptive  of the Lord and is overcoming some great addictions in her life.
We are eager to begin this next phase with Jude because by removing the ventilator, we'll be able to hear his voice for the very first time! All of this work collecting milk will also begin to pay off...a mother's joy!  ~Jen

more photos of jude's journey...

Jude's 1st "4th" (both right feet;) 
Sisters loving brother Jude 
Bella's tender heart 
Spending time with Jude 
Sweet friends visiting for the weekend 
Lunch at the hospital 
Our little warrior 

Friday, July 4, 2014

prayers answered...

"Let everything that has breath praise the Lord. Praise the Lord!"
Psalm 150:6
Thank you for your prayers. Jude is recovering well. His surgery went better than expected. He was able to be repaired without a patch. This is rare for CDH babies but it is the most effective way. Recurrence is low using this method. It hasn't been necessary to increase his pain meds which is also exceptional.
We were pleased with the surgeon who has 38 years of experience. He was professional, friendly, and respectable. He made sure we were kept updated every hour with Jude's progress during surgery. We felt cared for and in good hands.
We ultimately give the Lord praise knowing He orchestrated every minute of this procedure. Thank you friends and family for your love and support, prayers and help.

Jude was in the middle of wake-time as they wheeled him to the operating area. We followed him all of the way. We called it his first field trip as he seemed to enjoy it. The nurse was manually breathing for him with a hand held pump since his ventilator had to be disconnected for the journey.
Prior to surgery, we were able to spend time with him. It was bitter-sweet. While we were interacting with him, he was calm. But when we had to step away for someone to access him, he would cry the "silent" cry again, glowing with redness and throwing his fists and legs. It was grieving to witness. Just before leaving, I reminded him that he was precious in His sight and to be a warrior. We quoted some scripture to him and said good-bye.
We were able to see him again about 5 hours later. He appeared lifeless because of the paralytic drugs. There was no movement in his chest or body. He was resting comfortably so we left him to sleep.
We came home because my own pain began to settle in. It was a rough night without him but we called periodically for updates. The nurse said he had some wake-time. Sadness sets in when I know we can't be there to talk to him.

There is still a difficult road ahead but we know Who is in control. The next step requires Jude to be weaned from his ventilator and then on to weaning from all of the drugs. That will be difficult for Jude as he is now considered an addict. It will be a long haul so please pray for peace for him. The feeds will follow and that can be equally lengthy and challenging.
We will continue to update you. Thank you for you for all you have done. We assure you, it has not gone unnoticed. We will upload more pictures later today.  ~Paul and Jen
7/3 before surgery 
7/3 post surgery 
manual hand-held pump  
mama loving Jude prior to surgery 
daddy's kiss prior to surgery  
Grandma Sissa post surgery 

Wednesday, July 2, 2014

power perfected in weakness...

"And He has said to me, 'My grace is sufficient for you, for power is perfected in weakness.' Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong."  2 Corinthians 12:9-10 

I could hardly blog this post until today but it needs to be written. In the midst of precious moments, some don't feel sweet at all. Sunday, was one of those days. The day of discharge arrived too quickly. Never have I despaired leaving the hospital as I did this time. 
I wasn't prepared and after the first tear, they wouldn't stop. It was the snorting, uncontrollable kind...the type we all cried as children. Others were sympathetic but it didn't matter. I was leaving him. 
Paul decided to take home my bags after he parked me in the NICU. It was a good choice. I sat in the NICU staring at all of Jude's monitors. I enjoyed him resting. I sat quietly, in the dark and listened, closing my eyes, waiting to feel better. His nurse slipped around the corner, giving me the space I needed. When she returned, she shared her story. It was similar to mine...the lengthy stay, surgery, and sadness. She completely identified with me and encouraged me to grieve.

Paul returned an hour later to carry me "home," empty handed. The sobbing never stopped. Hours later he called a dear friend who shared her wisdom with him. Around 11pm, we were on our way back to the NICU. Not too many words but a settling mama. This all lasted for a couple of days while deep sorrow was evident in everyone.
I met another mama in the mother's milk lounge and we both expressed our feelings to one another. She is my new treasured NICU friend that has her own story of struggle. She helped me to laugh a little and to get over the hump. 
I'm grateful for a husband who isn't afraid to call a friend. I felt cared for and have a renewed strength from all of those who took the time to pray us through. As the tears fall at his bedside now, Paul reminds me that Jude is still here, and encourages me to take captive my thoughts.

There are other challenges including a low milk supply, daily abdominal blood thinner injections, swollen feet and legs, high blood pressure, worthlessness, lack of rest, and guilt feelings for our other children. 
The most difficult yet, however, is seeing Jude cry. Because of the tubes down his throat, there is no sound. Only a red face, clinched fists, angry legs and secured arms that want to fight but can't. The sinking feeling in my gut is heavy...too heavy to bear.
We need the Lord's strength and know He is able.
Last night when we made our final visit for the day, we found Jude less stressed, and relaxing well for the first time in days. I lowered one side of his bed. Leaning over, I barely reached his head with my face. I stayed in that position for quite some time, letting the tears flow while smelling his newborn noggin. I couldn't get was the first time I had that "mama moment" so far. ~Jen 

Tuesday, July 1, 2014

first days...

6/30 Jude's sweet blanket made by sweet Mrs.Wilson 
6/30 Paul and Uncle Rusty enjoying Higher Grounds Coffee
(it's excellent coffee) 
6/30 Kiddos enjoying some ice cream with Aunt Liz ~ compliments of Uncle Rusty! 
They decided to spend their 41st Anniversary blessing us!
 6/30 Jude having a tube stabilizer put in. The doctor asked me if I'd like to take a picture without the tubes. 
 6/28 Daddy changing Jude's diaper. This has been the only day Jude responded to us for a baby wake-time so far.
6/28 Mama feeding Jude her milk 2 days postpartum

amazing grace...

Amazing Grace, how sweet the sound...

Jude's operation is scheduled for this Thursday, July 3rd. We will learn the definite time tomorrow. The procedure will consist of repairing the hole in his diaphragm. It will be performed by UVA's chief pediatric surgeon who has 38 years experience.

We were informed that things tend to become a little more critical after surgery for a short time so we ask for your prayers. There is also an increased chance of the need for ECMO at that time (more about ECMO on our CDH page).  Knowing that is the reason we are here at UVA, we'll be grateful if Jude should need it but our prayer is that it won't be necessary. It is a huge praise that Jude hasn't needed ECMO through this point. 

Yesterday we learned more information regarding Jude's heart. The birth was considered a trauma birth without the additional known challenges of CDH and the need for immediate intubation. As the C-section was in progress, his positioning changed dramatically and the birth became lengthy and more challenging resulting in cord perfusion (his cord was pinched). His oxygen supply was compromised for an unknown period of time and that often results in damage to the baby's kidneys, heart, and brain. Jude's heart was stunned leaving the left ventricle weakened.

Testing has not revealed any brain bleeds but further tests will be done at a later point if the need should arise. Jude's echocardiograms reveal that his heart continues to strengthen so today they have him on a trial run to see if he responds well without the additional heart meds. 
My doctor believes the medication he ordered to be administered to me for my uterus to relax (to get Jude out), in turn caused my own heart issues. But is was definitely the right choice in order to save Jude. So there are many things to be thankful for here.
Our visits with Jude consist of changing his diapers, swabbing his mouth with my milk, administering .4 ml of my milk into his cheeks, taking his temperature, and talking or sitting quietly next to him. 
A monitor that is directly connected to his heart through a wire placed in his navel allows us to know his stress levels. If his heart rate is up, we try to speak to him or touch him but if that only raises his heart rate, then we simply stand over him if he is awake so he can see us. Because he is worked on much of the day, many times touch, voices, and light only stress him more. I occasionally slip in a kiss and soak up that newborn smell. But it is fading quickly.
The extra special blessing is that though the hospital is over two miles away, the direct view of his NICU window can be seen from our bedroom window. Amazing grace? Yes! And so last night before I left him, I sang him that sweet song ever so quietly as he watched me in the dim light with those little newborn eyes. I love him so much...I can hardly stand to walk away. ~Jen