Wednesday, November 18, 2015

Charlotte's NICU Stay // August 3

August 3 will forever be one of my favorite days with Charlotte.
8 days after her traumatic birth, we were finally able to hold our little girl.
 
From my IG: 8-3-2015 // So this happened this morning. And if this doesn't make you believe in God and miracles, I don't know what will! // Psalm 30:5 For his anger endureth but a moment; in his favour is life: weeping may endure for a night, but joy cometh in the morning.
 
 
From my IG: 8-2-2015 // Eight total days we went without holding our sweet girl. Eight days made up for in less than 5 minutes. My love tank is full. ♡♡♡ // This morning was a crazy, fast, busy one. Yesterday we missed her 1st messy diaper and passy action and that broke this Momma's heart. I told E that we needed to get to the hospital earlier than we normally do because obviously during her morning assessment monumental things happen. Monumental doesn't even cover this morning. We walk in, just after 10 am to her doctor, respiratory therapist and nurse all standing around watching her sats. Her doctor smiles at us with a good morning and a "she's off her Jet." I said, "I'm sorry. What?" He shrugs and smiles and says, "she wanted off of it. She was ready." Mind you we've been told the past few days that she needed to be at room level oxygen before this could happen and she was at 27% when we called for our morning update! He calls it "listening to your patient." Another 10 minutes goes by with all 5 of us watching her sats soar. He says she's ready to come off her other ventilator. My heart screamed with anxious, excited, nervous, thrilled reactions. He ordered a chest xray and the cannula to be ready. Her chest xray looked great, minus a small upper corner that wasn't inflating as it should. From there we watch the doctor extube her and we heard her cry. The most pitiful, raspy cry ever. My heart melted in a puddle. From there she was hooked up to her cannula and started a breathing treatment. Not 20 minutes later, she was in my arms! And we were both on Cloud 9. I could have held her forever, but I had to give her up to her Daddy due to my pumping schedule. I always knew seeing the two loves of my life together would melt me. And boy was I right. There's nothing quite like seeing your husband hold your newborn daughter for the first time. Seeing the look of love in his face; seeing what our love made. I'll never forget this day and I know 110% that God was in control of it from the beginning. She's our miracle from God and He fulfills His promises. // Next post will have prayer requests!  

 
My IG post basically recounts the whole morning, but there's things missing I want to remember. I want to always remember her doctor's mischievous smile when he told us she was off her jet. Oh, how we loved Dr. H! He was always the one to tell us any news with a positive spin. The other doctors were wonderful too. Don't get me wrong. But they all seemed to be more oriented to her numbers, while he was more oriented to her. I don't even know how to explain it, but I honestly feel like he loved our Charlotte. And even when he told me we'd get to hold her that morning, he told me he would be 3rd in line after me and Ethan to hold her. We all laughed, but he was serious. Because when I came back from lunch I found him holding her. He was draped in a hospital gown and he had our girl snuggled to his chest. It warmed my heart to know even when I wasn't there, Charlotte was being loved and taken care of.




 
Charlotte's breathing treatment post extubation is some of my favorite photos too. We'd never seen her sit up like this and listening to her little raspy cries could never get old.




 
When they told us we could hold her I told Ethan she needed a hat on. And of course this particular morning I'd left both her hats that were normally in my bag in the car. Thankfully Ethan is amazing and without hesitation ran downstairs to get them. Which in itself was an ordeal because you have to buzz out of the 3rd level NICU, go down the elevators to the 1st floor, go out to the parking garage, come back, get buzzed back in, and re-scrub in at the washing station! All this because I wanted her to wear a hat! :) Worth it. Totally worth it.



{One of my favorite pictures}







{1st time wearing clothes}

 
From my IG: 8-3-2015 // Our Little Love is about to have her long awaited, long prayed for MRI. Please pray she tolerates being moved and messed with, as well as for good results. This test will look at any structural damage her brain has and will give us a much more detailed view of her brain bleed. God is good and He's working mightily. Let's petition His throne and ask that they see nothing bad on her MRI. He's the Great Physician and with just one touch of His finger, she can be completely healed. I believe it and claim it!

{Sweet Girl at 8 days old}
 
Charlotte's NICU Story: Charlotte's Birth Story // Day 1 // July 27-29 // July 30 - August 2
 
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Tuesday, November 17, 2015

Charlotte's NICU Stay // July 30 - August 2

July 30, 2015
 
From my Instagram: Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Phil. 4:6-7 NKJV // Charlotte is having an EEG done right now for the next hour. Please pray her brain activity is normal. Also please pray for me and Ethan as we are very anxious about these results. I'm clinging to God's Word as we wait. // Char had a good night, is off ALL blood pressure medicines, and is putting out more urine, which helps with her swelling. We should know the results of her EEG tonight or tomorrow morning.
 
From my instagram: 7-30-2015 Another overall good day in Charlotte's road to recovery. She's still a very sick little one with very specific needs coming up, but for Day 4 she's making the kind of progress that's good for the heart. Today's big prayer request was her EEG, which we should know the results of tomorrow. And today she actually lost a couple of her medicines! Like she's completely off her two blood pressure medicines, she no longer has a catheter, she had her nose temperature probe removed and she no longer has to wear the hat that was holding her continuous EEG probes in her head! She's been warm for over 24 hours now, so that's a small milestone for her too. Ethan and I have a positive outlook for her, but she's still got major hurdles to cross. While I've been talking a lot about her brain, her other major organs are still not functioning. Her urine output has increased, but her kidneys are not functioning as the filters of blood they should be. Her liver and digestive system are also still not functioning. I know tonight's update seems mostly negative and I don't mean it that way, it's just so easy to look at her and see her beautiful little face and her healthy pink color and think there's no way she's still sick. But right now Charbaby is still very sick and still needs an incredible amount of healing and prayer, which God has been faithful to give her! Please pray specifically for her EEG results to be good, her kidneys to start functioning, and her swelling to go down. Thanks again for all your prayers, support, love and encouragement! And all the praise, honor and glory to God for healing her as much as He has and will continue to do!
 
{Char getting her foot printed}



{First time seeing her with her eyes open!}

{Getting her EEG}

{EEG shows brain activity. They were looking for signs of seizures.}

 
July 31, 2015
 
From my IG - 7-31-2015 // Day 5 has started off with good news! Sweet girl has been weaned off her morphine drip, but will still get doses every 2 hours as needed, her chest tube is OUT since the hole in her lungs has healed and all the fluid that was built up around her lungs is gone, AND sweet girl is getting her 1st "taste" of breast milk via her feeding tube. The doctor doesn't anticipate her digesting it well, but it's just another test we have to give her and another step in her healing process. We're still waiting on the results of her EEG, so please keep praying for good results! Our favorite doctor is on today and it's always reassuring to hear his updates. Please continue to pray for him and the other doctors and nurses to have wisdom for her care. With God's grace and mercies, we'll continue seeing little Charlotte continue to heal.
 
From my IG - 7-31-2015 // Here's a glimpse of how great our God is! These pictures are only TWO days apart! All praise, honor and glory to God! Sweet girl is taking her healing slow and steady, and that's just fine with us. We have to listen to her little body and let her figure things out on her own with help from her wonderful medical team. When we came in this morning we were delighted to see her chest tube gone, no more morphine drip, and she'd been weaned off her nitric oxide which helped her absorb the oxygen in her lungs. Over the course of the day her urine output is up, and she had her 1st "meal"! Speaking of that first meal, the doctor expected her to not tolerate it at all and she actually digested part of it! She'll get her second 1/2 ounce soon in her feeding tube and it will be monitored until the next feeding. We're still waiting on the EEG results, but those take time and as my Mom told me, "the results of her EEG have no effect on the progress she's made today." Please do continue to pray for those results to be normal. More specific prayer requests are that her MRI on Sunday comes back with no structural damage to her brain, that her lungs continue to keep fluid off themselves and continue to heal, that her kidneys, liver, and digestive system start healing better and functioning as the major organs that they are, and that her swelling continues to decrease. She lost 200 grams this morning, so that was fantastic news and is very evident in her picture. I thank God every day for this sweet baby He's given me and Ethan. I feel so blessed to be her Momma and can't wait for the day I get to hold her, take her home, and truly call her mine.




 
August 1, 2015
 
From my IG - 8-1-2015 // We got the results of Charlotte's EEG! And I have to say, the Lord is GOOD! He has touched our sweet Charbaby and it's evident in her healing! Her test showed no seizure activity and no sharp wave activity, which are both good signs! Her brain activity was symmetrical which means no one side of her brain is more damaged than the other. Going into it, her doctor expected her to have severe encephalopathy (damage to the brain) and hers came back mild to moderate. Overall a good EEG! I'd say all the prayers for her are being answered, so even with all her positive updates please don't stop praying for Charlotte! She is still very sick with alot of healing left to do! I just want God to receive all the honor, glory and praise for what He's doing with her!
 
From my IG - 8-1-2015 // Now that I'm a parent, I have the smallest of ideas how much God really loves us. The smallest of ideas, but I feel it more real now. God loves us so much that He gave his only begotten Son to die on a cross so we could have eternal life. I, on the other hand, have my one, precious daughter, and I promise you there is not one soul on earth I'd sacrifice her life for. Let that sink in for a moment. God loves us so much that He sacrificed His Son for you to have eternal life. That's an incredible amount of love. John 3:16-17 - For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.  For God sent not his Son into the world to condemn the world; but that the world through him might be saved. // Charlotte's morning started off with the best news we could have received all day. The results of her EEG came back good. (One post back has more details.) The rest of the day was slow. The doctor is currently trying to wean her off one of her two ventilators to get her down to room level oxygen, and Charlotte is taking her slow, sweet time adjusting to all changes. Her progress is slow, with a step forward here then a step back there, but forward progress nonetheless. I pray we come back in the morning to see her O2 levels are near 21%. Sweet Girl is not getting her MRI done tomorrow as originally planned because she needs to be weaned off her Jet ventilator first. I believe this setback is for all of us to have more time to pray for her MRI to come back good. Overall I'd say Charlotte had a good, but slow and steady day of healing. To end the night, I ask specific prayer for her MRI (whenever she gets it) to come back good, good ultrasound results to come back tomorrow, her to be weaned off her Jet ventilator, and a good night's rest. As always, we appreciate the prayers and have seen God working miracles on our baby girl. She's not in the clear yet and still needs all the prayers she can get.





 
August 2, 2015
 
From my IG - 8-2-2015 // Not the morning update were used to having. God's blessed Charlotte so much in her little life already and we were starting to take the good news for granted. Charlotte's brain bleed has spread from a grade 2 to a grade 3. We're not sure if this is due to her brain not being as swollen as it was at birth and the bleed had room to spread or if it's always been a 3 and this is actually a more accurate scan. We did get some good news this morning and we praise God in that. She's continuing to lose weight and other small steps of progress. Please continue to pray hard for our little girl. She's got alot of healing left to do and big hurdles to jump with her brain bleed and development. // But when Jesus heard it, He answered him, saying, “Do not be afraid; only believe, and she will be made well.” - Luke 8:50


 
From my IG - 8-2-2015 // Happy One Week Birthday, my Little Love! You've gone through more in your one week of life than many others do their entire lives. You're definitely our little fighter, little love, miracle baby, and our most precious gift from God! We think you look like Daddy, but definitely act like Mommy. We're so proud of what all you've accomplished and overcome in 7 short days. Charbaby, we love you and can't wait to spend the rest of our lives watching you grow and continue to amaze us! ♡, your Mommy


 
From my IG - 8-2-2015 // What started off as a rough morning was ended as a good day. Despite the news that Charlotte's brain bleed has spread, we still have so much to thank God for. Sweet girl had her 1st {very small} messy diaper, continues to have good heavy wet diapers, and is still off all blood pressure medicines, morphine doses, and she's being weaned off her sedation medicine and Jet ventilator. She needs to be at 21% oxygen to be weaned off and she's currently at 25%. So close, yet it's up to Charlotte to tolerate it. Her feedings are getting better and her little digestive system is waking up and working hard! With the last feeding she had her tummy left almost no residual leftovers! And that's very good news! We've still got specific prayers as her journey to complete health isn't yet complete. We still need her to be weaned off her Jet ventilator so she can get her MRI. And it's general, but we just need her overall health to continue to improve. She's got sick lungs, kidneys, liver, and the digestive system. Also continue to keep her brain bleed in your prayers that it not spread more. // Funny story about my sassypants ~ Charlotte is awake more now and does not like her ventilator tubes and has been caught multiple times trying to pull her tubes out of her mouth. Seriously, my one week old is death-gripping her tubes with those long little fingers. So much that her nurses are having to get creative when it comes to preventing this. My favorite one was her baby hog tie using a baby robe. I literally laughed when I saw how she was rigged up. But it makes us feel better knowing she's not "playing" with her "toys"! She'll have plenty of time for toys when she's older! // Thanks to all that have continue to prayer for our miracle baby. We truly appreciate all the prayers and know that God is hearing them! // Jeremiah 17:14 Heal me, O Lord, and I shall be healed; save me, and I shall be saved: for thou art my praise.




 
Charlotte's NICU Story: Charlotte's Birth Story // Day 1 // July 27-29
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Charlotte's NICU Stay // July 27-29

Charlotte's NICU stay wasn't your typical stay. Honestly most people assumed that because she was in the NICU she was a preemie. Being too small was never her problem. She was born at a healthy 40 weeks, 6 days. Her problem was the meconium aspiration and the snowball effect of terrible things that caused. And while preemies have their own set of challenges, Charlotte's was a whole different ball game.
 
July 27, 2015
 
By Day 2 most of her major organs had shut off, her brain was swollen and that's the day we found out she had a brain bleed. She was also given a chest tube to drain the blood and fluid off her lungs. Our good news for July 27, was that her kidneys were starting to make slow progress and an ultrasound on her abdomen didn't show any additional bleeds. I remember Day 2 being an awful one. We were exhausted beyond belief. We were given the worst news that her brain had a bleed and then later told they were giving her a chest tube. The hospital graciously offered to let us stay in their onsite family room, located across the hall from the Level 2 NICU, since she was so critical. We stayed there for a couple hours trying to rest, but it was seriously the most depressing room ever. It had the perk of a soft bed with pillows, but you could hear the cries of all the babies in the NICU right across the hall. All the crying just made us cry more. We'd never heard our baby cry and it was just a sad reminder of the situation we were in.
 
From my Instagram: Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body. - Elizabeth Stone // 7-27-15 Today had its ups and downs, but God graciously let us end it on a good note. We started the day rough with the news that she needed a chest tube to remove oxygen outside her lungs and later news that they had discovered a bleed on her brain. Her good news for the day was that her kidneys are making slow progress and an ultrasound done on her abdomen didn't show any other bleeds. Char still has a very long road to recovery, but by the Grace of God and every prayer, Ethan and I have faith that one day we'll bring our baby girl home. Please continue to lift our sweet girl up the The Great Physician, our God.
 
{July 27 - 2 days old}
 
{new chest tube} 

 
July 28, 2015
 
July 28 was a complete 180 from the day before. We had prayers answered and even got to give Charlotte a kiss on her arm. That was the first skin to skin contact we had with her. And I can still remember the flood of butterflies I got in my stomach when my lips touched her little arm. I can picture the nurses face when I answered "Really?!" to her question of "do you want to give her a good bye kiss?" She even apologized that no one had given us this chance yet. It was the best. And it's still one of my "favorite" memories from Char's stay. After so many tears, it was nice to finally have happy tears. I think I basically skipped out of the room, down the hall and into the waiting room where a bunch of our family and friends were sitting and exclaimed "WE GOT TO KISS HER!" Just thinking back on this moment is making me tear up.

From my Instagram: 7-28-15 Today was definitely a "top of the mountain" kind of day, especially after all of yesterday's bad news. While Charlotte remains critical, we saw many answered prayers - like her urine output increasing. That was a direct prayer request answered. Tomorrow is a huge day for Char. Since she was admitted on Sunday morning she's been on a cooling pad to help preserve her organs and tomorrow they start the rewarming process. We expect some downs tomorrow and know it'll be a long day. We need specific prayer that tomorrow's rewarming goes great. They'll raise her core temperature by half a degree every hour as long as Char tolerates it. We'll also have another brain scan tomorrow to check on her bleed. Please pray that the bleed has not spread. These are two very specific needs for our baby. We appreciate all the prayers. // Now why today was our "top of the mountain" day - Mommy and Daddy got to kiss our sweet girl for the very 1st time today. It was only on her arm, but man.. that was the most incredible moment. I can only imagine what really kissing and holding her will feel like. I swear my heart grew 100xs bigger. I also got to help change a diaper, swab her mouth with a q-tip dipped in my breast milk, and got to see her peepers when the nurse was checking her pupil dilation (which was good)! God gave us such good moments today with our sweet girl. I pray we continue to have more good moments and even better progress!

{July 28 - 3 days old}

{Giving Charlotte "oral care" by swabbing my breast milk in her cheeks to promote good bacteria}
 
July 29, 2015
 
"Rewarming Day" as we like to call it. I was terrified. I remember being so scared. Not only for Charlotte, but also myself. And my dad. It was his birthday and I didn't want anything terrible to happen on his birthday. Sounds bad, but I didn't want her to die on my Dad's birthday. Not that that was going to happen, but rewarming her had its challenges. It was explained to us that they would raise her body temperature by half a degree every hour and her body would have to meet the new temperature before being raised again. Things like seizures were high on the radar. Ethan and I slept at home the night before like every other night thus far and made our early morning call to the nurse for an update. I can't remember specifically, but I know we were shocked at how well she was doing. By the time we arrived to the hospital, she was completely warm. I remember her pretty pink tint. She looked "good."
 
From my Instagram - 7-29-2015 // Simply amazing day. A day filled with watching God perform miracles. A day that I was honestly dreading. A day that I can say was all God and all answered prayers! Sweet girl went through her rewarming process like a champ with little negative effects! She's actually a little too warm right now so all her prayer warriors can stop praying for her warmth! ;) She's also weaned herself off a blood pressure medicine, so she's down to just one! More awesome news is that her brain bleed has not spread! We're still not in the clear yet with her brain and an MRI will be done Sunday. I'll be asking specific prayer for that each day. The next couple of days should be calm, healing days. I'm praying for uneventful days full of good progress. Her specific needs for tomorrow are a good EEG and reduction in all her swelling. I love those luscious rolls, but they gotta go! :) Thank you all for your prayers and sweet words of encouragement. I'm definitely reading all of them and they help this Momma's heart tremendously. But most of all I thank our Great Physician and give Him all the glory, honor, and praise for our sweet girl's amazing progress so far!








 
{Taking her temperature}


 
Charlotte's NICU Story: Charlotte's Birth Story // Day 1
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