When did Friday get here? This week has flown by! It started on Monday with surgery to close Landry's chest, and now we're already heading into the weekend.
We are still in the PICU. Same room, same boom box in the corner rockin' K-LOVE 24/7. Perhaps the reason we haven't given an update these past four days is because not much has changed. Her swelling has slowly improved each day, but she still has 500-600 mL to flush. Most of the extra fluid has gathered around her torso and back of her head. The doctors and nurses are not concerned...it's just a matter of time. Other than that, her vitals are good, her wound is healing, and she's just getting cuter and cuter by the minute!
We continue to pray for no infections, continued healing, and strong lungs. Her true test (extubation) will come soon...please pray that she will seamlessly transition from breathing thru the ventilator to breathing on her own.
We will soon get to hold our baby once again! Praise the Lord!! Thank you for your prayers!
Friday, June 28, 2013
Monday, June 24, 2013
Road to Recovery
Over the last few weeks, Kacee and I have learned that at the hospital things happen rather quickly. Take, for instance, last week when the doctors told us Tuesday evening that Landry would undergo open heart surgery the next morning (in hindsight, perhaps we were better off not having even 24 hours to dwell on it). We knew it was going to happen sooner than later, but when the moment arrived, it was difficult to swallow (literally and figuratively).
Only a few days later, we faced a similar scenario. The doctors were closely monitoring Landry's vitals and hoping to see her little body flush all the excess fluids that had accumulated from the invasive operation. So, we prayed for pee....and we got it!!! We were so happy to see the swelling go away and her body return to its normal weight. Consequently, the doctors decided that she was ready for surgery, and to finally close her chest. There it was....that moment when we realized the circumstances would once again change....our baby would once again be taken back to the OR, out of our sight, out of our hands....and we didn't have time to dwell on it. We didn't have time to worry.
Soon, we were signing consent forms (which I don't suggest actually reading the content), meeting new nurses and new doctors. And in that moment, our parental guards were UP..."These people haven't even met Landry!" "Do they even know what her circumstances are?" Even silly questions, like "Have they even done this kind of operation before?" "How long has this nurse/doctor been in practice?" "Do they know our little angel is only 13 days old!?"
And moments later, we were next to her, riding the elevator up to the 5th floor. We each gave her a quick kiss on the head, and told her to "do good" and "we love you so much"! We then retreated to the waiting room where we would sit waiting with all of Landry's grandparents for an update. It all happened so fast.
A couple hours later, Landry was out of surgery. The doctors ended up giving her an aortopexy. Big word, I know, (I had to Google it) but essentially it serves as a type of suspension which helps to remove the weighted pressure of the pulmonary arteries away from her airways. Her chest was then fully closed and bandaged.
Currently, Landry is doing well. We will pray for a speedy recovery, pray against infection, and hope she is released from PICU and returned to the NICU. Once in the NICU, they will promptly attempt to extubate her. This will be the moment of truth! The doctor has warned us that this will be her next big hurdle. If she cannot breath on her own, she will require a tracheostomy. Our hope is that she will get to show the world how well she can breath on her own! Please pray for her strength. Pray for her lungs. Pray that upon extubation, she will breath independently, on her own. Pray that she can continue to thrive one day at a time, one milestone at a time.
Kacee and I are often asked how we're doing. And sometimes I have a difficult time explaining my feelings. So, my question to you is: How would you define God's grace? How do you explain an overwhelming peace in moments when you should be terrified?
We feel loved. By our families, our friends, but above all, WE FEEL THE LOVE OF OUR SAVIOR, JESUS CHRIST. We finally understand Phil 4:7....His peace surpasses our understanding.
WE ARE SO PROUD OF OUR LITTLE JUNE BUG! OUR HEARTS ARE FULL OF LOVE FOR THIS PRECIOUS BABY! THANK YOU, THANK YOU, THANK YOU, FOR YOUR PRAYERS AND SUPPORT! IT MEANS MORE TO US THAN YOU WILL EVER KNOW.
FOR HIS GLORY,
Kacee & Kyle
Micah 7:7 - "But as for me, I watch in hope for the Lord, I wait for God my savior, my God will hear me."
Only a few days later, we faced a similar scenario. The doctors were closely monitoring Landry's vitals and hoping to see her little body flush all the excess fluids that had accumulated from the invasive operation. So, we prayed for pee....and we got it!!! We were so happy to see the swelling go away and her body return to its normal weight. Consequently, the doctors decided that she was ready for surgery, and to finally close her chest. There it was....that moment when we realized the circumstances would once again change....our baby would once again be taken back to the OR, out of our sight, out of our hands....and we didn't have time to dwell on it. We didn't have time to worry.
Soon, we were signing consent forms (which I don't suggest actually reading the content), meeting new nurses and new doctors. And in that moment, our parental guards were UP..."These people haven't even met Landry!" "Do they even know what her circumstances are?" Even silly questions, like "Have they even done this kind of operation before?" "How long has this nurse/doctor been in practice?" "Do they know our little angel is only 13 days old!?"
And moments later, we were next to her, riding the elevator up to the 5th floor. We each gave her a quick kiss on the head, and told her to "do good" and "we love you so much"! We then retreated to the waiting room where we would sit waiting with all of Landry's grandparents for an update. It all happened so fast.
A couple hours later, Landry was out of surgery. The doctors ended up giving her an aortopexy. Big word, I know, (I had to Google it) but essentially it serves as a type of suspension which helps to remove the weighted pressure of the pulmonary arteries away from her airways. Her chest was then fully closed and bandaged.
Currently, Landry is doing well. We will pray for a speedy recovery, pray against infection, and hope she is released from PICU and returned to the NICU. Once in the NICU, they will promptly attempt to extubate her. This will be the moment of truth! The doctor has warned us that this will be her next big hurdle. If she cannot breath on her own, she will require a tracheostomy. Our hope is that she will get to show the world how well she can breath on her own! Please pray for her strength. Pray for her lungs. Pray that upon extubation, she will breath independently, on her own. Pray that she can continue to thrive one day at a time, one milestone at a time.
Kacee and I are often asked how we're doing. And sometimes I have a difficult time explaining my feelings. So, my question to you is: How would you define God's grace? How do you explain an overwhelming peace in moments when you should be terrified?
We feel loved. By our families, our friends, but above all, WE FEEL THE LOVE OF OUR SAVIOR, JESUS CHRIST. We finally understand Phil 4:7....His peace surpasses our understanding.
WE ARE SO PROUD OF OUR LITTLE JUNE BUG! OUR HEARTS ARE FULL OF LOVE FOR THIS PRECIOUS BABY! THANK YOU, THANK YOU, THANK YOU, FOR YOUR PRAYERS AND SUPPORT! IT MEANS MORE TO US THAN YOU WILL EVER KNOW.
FOR HIS GLORY,
Kacee & Kyle
Micah 7:7 - "But as for me, I watch in hope for the Lord, I wait for God my savior, my God will hear me."
Saturday, June 22, 2013
Brief Post Surgery Update
Our sweet girl is a trooper (to say the least)! She is doing a great job and we are forever indebted to the wonderful nurse's caring for Landry. Overall, she is doing very well in recovery. She has had some ups and downs, but for the most part our days have been rather calm (and we thank the Lord for that). Landry is still swollen from the procedure and some of the medications that she has been taking so we are thinking that her chest will be closed on Monday. As for now she needs to continue peeing to get the extra fluid off. As we receive more conclusive information tomorrow, we will be sure to post an update. We are grateful for all of the love and encouragement that all of you have provided. Thank you!
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
-2 Corinthians 12:9
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
-2 Corinthians 12:9
Wednesday, June 19, 2013
Surgery Update
Friends and Family,
It has been a long day. We promise to send more details soon, but here is the quick version for now...
At roughly 10:30am Landry was wheeled away so they could start prepping her for surgery. Close to 11:30 they started surgery and about every hour we received a call from the OR nurse letting us know that they were still working. It wasn't until around 4:30pm when she called to tell us they were finally finishing up. We saw Landry for a quick 10-15 seconds around 5:30, as they were wheeling her down the hall to the PICU.
We intend to add more details later, but in regards to the surgery...
- The surgeon was pleased with the outcome. He successfully repaired both her Pulmonary Arteries AND heart defect (Tetralogy of Fallot w/ Absent Pulmonary Valve). Praise the Lord!
- Upon closing her chest, the surgeon and his team agreed on leaving her chest cavity open. In other words, he did not fully close her sternum. This may sound terrible, but history has proven this strategy to be most effective in allowing the internal swelling to properly reduce. Now, I know what y'all are thinking....and NO, she's not laying on her bed with her chest wide open. He secured a chest patch which will cover and protect her wound until the swelling goes down. Our doctor expects to come back and fully close her in 2-3 days.
- The next 12-24 hours will be full of ups-n-downs. The PICU team will be diligently monitoring her vitals and adjusting her fluid levels. The doctor urged us to mentally prepare ourselves for an emotional rollercoaster.
We love you all so much! And though we may not get the chance to respond to all texts, emails, and phone calls, PLEASE KNOW THAT YOUR SUPPORT MEANS EVERYTHING TO US!!! We embrace your love and truly feel your prayers. Honestly, with what has happened over the last 6 weeks, Kacee and I admit to being spiritually exhausted. We feel like our own prayers lack enthusiasm and perhaps fall flat. That's when we recognize all of your prayers interceding in our life and carrying us through each day. Thank you for providing an uplifting spirit! We thank the Lord you are in our life.
All Our Love to You,
Kacee & Kyle
It has been a long day. We promise to send more details soon, but here is the quick version for now...
At roughly 10:30am Landry was wheeled away so they could start prepping her for surgery. Close to 11:30 they started surgery and about every hour we received a call from the OR nurse letting us know that they were still working. It wasn't until around 4:30pm when she called to tell us they were finally finishing up. We saw Landry for a quick 10-15 seconds around 5:30, as they were wheeling her down the hall to the PICU.
We intend to add more details later, but in regards to the surgery...
- The surgeon was pleased with the outcome. He successfully repaired both her Pulmonary Arteries AND heart defect (Tetralogy of Fallot w/ Absent Pulmonary Valve). Praise the Lord!
- Upon closing her chest, the surgeon and his team agreed on leaving her chest cavity open. In other words, he did not fully close her sternum. This may sound terrible, but history has proven this strategy to be most effective in allowing the internal swelling to properly reduce. Now, I know what y'all are thinking....and NO, she's not laying on her bed with her chest wide open. He secured a chest patch which will cover and protect her wound until the swelling goes down. Our doctor expects to come back and fully close her in 2-3 days.
- The next 12-24 hours will be full of ups-n-downs. The PICU team will be diligently monitoring her vitals and adjusting her fluid levels. The doctor urged us to mentally prepare ourselves for an emotional rollercoaster.
We love you all so much! And though we may not get the chance to respond to all texts, emails, and phone calls, PLEASE KNOW THAT YOUR SUPPORT MEANS EVERYTHING TO US!!! We embrace your love and truly feel your prayers. Honestly, with what has happened over the last 6 weeks, Kacee and I admit to being spiritually exhausted. We feel like our own prayers lack enthusiasm and perhaps fall flat. That's when we recognize all of your prayers interceding in our life and carrying us through each day. Thank you for providing an uplifting spirit! We thank the Lord you are in our life.
All Our Love to You,
Kacee & Kyle
Tuesday, June 18, 2013
Surgery Tomorrow
Just a quick update to share that as of 5:00 today we found out that Landry will have surgery tomorrow. She is the second case so we think she it will be around 10:00.
We will be relying on our Heavenly Father to get us through this. Join us in prayer:
We will be relying on our Heavenly Father to get us through this. Join us in prayer:
- Pray for our sweet girl. She has a big day ahead of her.
- Pray for the Holy Spirit to fill her operating room.
- Pray that God, the Great Physician, would guide the skilled hands of Dr. Kupferschmid while granting him wisdom as he works to heal Landry.
- Pray for the nurses and staff who will be caring for Landry during and after surgery.
- Pray for us to find peace and comfort knowing that this is the best thing for Landry. Help us to be strong, faithful and courageous as we face the day.
Thank you,
Kacee and Kyle
Monday, June 17, 2013
Praises!
Quick Update:
God's grace has been poured all over us! We're happy to share a few praises...
- Landry's GI tract is functioning properly! We were pleased when the doctors determined there was no need for further testing. Praise the Lord for dirty diapers!
- The doctors have extubated Landry, and her little lungs have been doing so well! She still uses a nasal cannula, which provides positive oxygen thru her nostrils, but overall we are so happy with her breathing performance. Ultimately, the cannula has allowed her many new milestones:
1.) The nurses can finally feed her via a feeding tube. She now can benefit from Momma's milk!
2.) She has taken to her pacifier. We were excited to see her natural reflexes seemlessly take effect.
3.) We can now hear her cry. Although this may seem sad, we feel like we are able to take better care of her by simply listening for her cries.
- Our team of cardiologists have agreed that Landry will undergo surgery sooner than later. They will operate on her arteries to reduce them from 13mm to normal size (5-7mm). If all goes well, they are hoping to also operate on her heart to correct her heart's defect (Tetralogy of Fallot w/ Absent Pulmonary Valve). We are praying that they will be able to perform both surgeries...in essence, a two for one deal.
- Her surgery date is yet to be determined. The doctors are trying to get her on the surgery schedule this week (possibly as early as Wednesday).
- Our hearts are full each time we get to hold our little June Bug!
- Kacee is recovering flawlessly from surgery! She's been up and moving around with very little pain. She feels great, looks great, and you'd never think she just spent the last 5 weeks on bedrest!
- We LOVE our little Landry Kate!! Our hearts continue to grow for this little angel. Thank you so much for the prayers! Please keep them coming!
God's grace has been poured all over us! We're happy to share a few praises...
- Landry's GI tract is functioning properly! We were pleased when the doctors determined there was no need for further testing. Praise the Lord for dirty diapers!
1.) The nurses can finally feed her via a feeding tube. She now can benefit from Momma's milk!
2.) She has taken to her pacifier. We were excited to see her natural reflexes seemlessly take effect.
3.) We can now hear her cry. Although this may seem sad, we feel like we are able to take better care of her by simply listening for her cries.
- Our team of cardiologists have agreed that Landry will undergo surgery sooner than later. They will operate on her arteries to reduce them from 13mm to normal size (5-7mm). If all goes well, they are hoping to also operate on her heart to correct her heart's defect (Tetralogy of Fallot w/ Absent Pulmonary Valve). We are praying that they will be able to perform both surgeries...in essence, a two for one deal.
- Her surgery date is yet to be determined. The doctors are trying to get her on the surgery schedule this week (possibly as early as Wednesday).
- Our hearts are full each time we get to hold our little June Bug!
- Kacee is recovering flawlessly from surgery! She's been up and moving around with very little pain. She feels great, looks great, and you'd never think she just spent the last 5 weeks on bedrest!
- We LOVE our little Landry Kate!! Our hearts continue to grow for this little angel. Thank you so much for the prayers! Please keep them coming!
Friday, June 14, 2013
Landry has a cozy home in the NICU. We cannot determine the length of her stay in the hospital, but her circumstances lead us into thinking we will most likely be here, at the very least, a few weeks. Here's an abbreviated attempt at filling you in:
- Her pulmonary arteries are enlarged. Normal arteries are 5-7 mm in diameter. Her's are measuring around 13mm. Essentially, what is happening is, these arteries are squeezing her air ways, pinching (for lack of a better term) them down to 1mm clearance. Without getting too technical, this means she will need to have surgery to reduce the size of the arteries, thus releiving the restriction on her airways, which will allow her lungs to suffiiciently operate. The surgery date is contingent upon other factors, including, but not limited to...
- Her intestines. The doctors are monitoring her intestinal tract, making sure they are adequately processing. She has undergone a barium test, in which a dye was used to radiographically track her intestinal digestion rate. We were
- Landry is anemic. Her red blood cells were lacking oxygen, so a blood tranfusion was administered yesterday. This was the first of perhaps many blood transfusions yet to come.
- Two days after birth, we were finally given the
opportunity to hold her! "Kangaroo Care", as they call it, has become one of our favorite times of the day.
- Because of her GI (Gastro-Intestinal) issue, she has not yet been fed. For now, her IV is providing sufficient nutrients/electrolytes. Hopefully soon, she will be cleared to receive nutrient-rich milk from Momma.
- Kacee has been consistently producing milk, which has been safely kept in a designated milk bank. She will continue to pump, stocking up for when Landry can finally receive oral feeding.
- Kacee has recovered well from her c-section. She is up on her feet, walking around seemlessly. Her wound is healing properly and her pain is easily remedied with ibuprofen.
- Kacee and I have been cleared to go home. We look forward to sleeping in our comfy bed! We will work towards gettting into a routine of a healthy balance of time spent at home and time spent with Landry in the NICU. It is difficult to be away from our little June Bug, but we feel she is in good hands, and fully trust our nurses/doctors.
Thank you for your support! We will be posting additional pictures as the days pass by. Continue praying for us. Overall, Landry is doing well. Please pray for her continued strength and resilience. Also pray for Kacee to fully recover from surgery and for us to courageously surrender our will to His.
Much Love,
Kacee & Kyle
"Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you."
- 2 Thessalonians 3:16
Subscribe to:
Posts (Atom)