When was the last time I updated everyone? I cannot remember so I will do a quick recap of the past two weeks to catch everyone up. You'll have to forgive me if any of this is repeat information...
Monday, January 31: Bryce was taking the majority of his feedings by mouth (approx 6 of his 8 feedings). Grant was just beginning to bottle feed but was already doing as good, if not better, than Bryce. There was talk of him going home before big brother.
Tuesday, February 1: Dr. Essman comes in at 10am to examine Grant's eyes and determines that surgery needs to be performed because of the severity of his retinopathy of prematurity (ROP). Worst snow storm in the last 99 years begins. Paul and I make our way up to the hospital approximately 40 minutes before surgery is due to begin. We give Grant a kiss and then go to visit with Bryce and wait for Dr. Essman to come and talk to us. Approximately 15 minutes later, one of the neonatologists come to talk to us. Grant coded during intubation requiring 5 minutes of chest compressions. He was down for approximately 6 minutes. Dr. Essman came by shortly after to talk to us and explain the surgery, we signed some forms and then surgery began. Grant struggled to maintain his sats during surgery so a 1 hr procedure took nearly 3 hrs. The procedure itself went fine and Grant was resting peacefully and was heavily sedated by 3:30pm. The snow storm was crazy and I was snowed in at the hospital for the night. During the night Grant's heart rate and sats dropped repeatedly and he struggled each time to recover.
Wednesday, February 2: Grant continued to do poorly on the ventilator. We were not sure why he was struggling so bad but the theory was that he was just hating the vent and still recovering from coding. Bryce took every feed by mouth today.
Thursday, February 3: It was decided that they would try extubating Grant to see if that would solve the problem. He was reintubated less than 30 minutes later. His events became more frequent and an EEG was ordered : the events were actually seizures. His seizures were quite significant and often required bagging to get him to recover. A second drug (Kepra) was started to get the seizures under control. Thursday night he had a seizure that lasted nearly 30 minutes despite the 2 rounds of Ativan, large bolus of phenobarbital and pentobarb (sedation). I was emotionally exhausted.
Friday, February 4: Bryce continues to take all feeds by mouth. Grants seizures slowing coming under control.
Saturday, February 5: Care-by on Tuesday for Bryce if all goes well. Grant is still seizing but no longer requires bagging to recover.
Monday, February 7: Dr. Atkinson comes in to evaluate Bryce's eyes. I stayed during the procedure. It looks mid-evil. *sigh* He says that Bryce needs to be seen by Dr. Essman the following day; possibly surgery for ROP. My heart sank. Grant had no seizures this night. I stayed the night at the hospital.
Tuesday, February 8: Dr. Essman evaluates Bryce in the morning and determines that surgery is required. You could have knocked me over with a feather. One of the most incredible nurses, DaNae, switched days with another nurse to be present during his surgery (she'd already worked an 8 day stretch). DaNae became my biggest support during all of this. Her hugs and allowing me to cry on her shoulder helped tremendously as by this point, I was a wreck. Bryce did not have to be intubated for his surgery and the procedure went well. He was placed on the nasal prong ventilator to help him breathe while he recovered from the surgery but at no point required intubation. At 3pm he was switched back to nasal canula. Grant continued to improve.
Thursday, February 10: Grant was extubated and did very well. He was placed under an oxygen hood and did not require CPAP like originally anticipated. Bryce goes to care-by-parent.
Friday, February 11: Bryce is finally discharged and we are able to bring our first born son home from the hospital after 10 weeks. Grant takes his first bottle in nearly 2 weeks. He does wonderfully.
Saturday, February 12: Grant takes every feed by mouth and no feeding tube is needed. Bryce continues to adjust to a house full of noisy girls. His sisters are elated that he is home.
Sunday, February 13: Grant again takes all feeds by mouth and no feeding tube is needed. Bryce is very, very sleepy and needs to be wakened for each feeding. Daddy's birthday is today. What a wonderful birthday gift that his baby boy is home!
Monday, February 14th: Grant has his exam with Dr. Atkinson. Wears out from the surgery and requires an NG tube be placed. Feedings given through NG at 6pm and 9pm. No seizure activity for 4 days in a row. Talk of care-by-parent in the next week if he continues to take his bottle as well as he has been since Friday. MRI scheduled for Tuesday.
I know that this is different way to update than my norm but hopefully it gets everyone caught up to date on what has been happening. The detour that we took after Grant's coding was quite a detour and emotionally trying for both Paul and I but what an answer to pray that he picked back up on things after extubation and even did better than prior to surgery.
Please continue to pray for our little men. They have come so far but still have a long ways to go. We have cardiologists, pediatricians, neurologists, occupational, speech and physical therapists, caffeine, phenobarbital, oxygen tubes/tanks and apnea monitors. We're still learning how to nurse and wean off of our special Haberman bottles. It has been quite an adventure the past 10 weeks. Bradycardia, tachycardia, seizures, PDAs, PFOs, brain bleeds, codings, ROP and laser surgeries, reintubation.... they have had so many obstacles. But each time God has answered our prayers and brought them through with the help of some incredible staff at St. Johns. I look forward to seeing them continue to grow and develop in the coming months. God has a mighty plan for these tiny miracles!
Tuesday, February 15, 2011
Thursday, February 3, 2011
Where's the next stop because I want off this bus! So much has happened in the past few days that my mind is a bit muddled. You will have to bear with me as I try to sort it out and update everyone.
Grant and Bryce had been doing spectacularly this past week. They were both gaining weight and eating like champs. Grant began bottle feeding and was actually doing better than big brother who'd been bottle feeding for a couple of weeks. We began talking about the things that were needing to take place before they go to care-by-parent and then home. Then everything came to a crashing halt with Grant on Tuesday. Last week both boys had their routine eye exams. Bryce's are premature but ok so far. Grant has retinopathy and plus disease (I will post links to explain later) and they decided to repeat his eye exam on Monday. Monday morning the pediatrician looked at his eyes and decided that he may need surgery and wanted Dr. Essmon, the neo-surgeon, to take a look and give his opinion on Tuesday. Its not a super intensive surgery. They do it in the NICU. On Tuesday morning I received a call that they were doing the surgery at noon. In the middle of the worst blizzard since 1912 we headed up to the hospital to be with the boys.
When we arrived in the NICU after a very snowy drive Grant had already been moved to the isolation room for surgery prepping while Bryce remained in their spot on the back row. We gave Grant a kiss before they intubated and went back to see Bryce. I chatted with the mom of triplets and a few of the nurses; all of us blissfully unaware what was taking place with Grant. During intubation, Grant decided he wanted no part of it and coded. He dropped his heart rate dangerously low and his oxygen saturation plummeted. They had to administer 6 minutes of chest compressions and two rounds of epinepherine to get him back up. I am in awe of how resilient infants are. If you or I had coded like that we'd be a vegetable; best case scenario. They had to very heavily sedate him to do the surgery but the procedure, though taking three times as long as anticipated, went well.
Through the night, Grant began dropping his heart rate and sats more and more often. He wasn't supposed to be on the vent for more than 2 or 3 hours after intubation but due to the severity of his events, he remained on it through the night. They were able to wean his pressure settings some that night and into Wednesday but as his events became more severe, his settings had to go back up. Paul and I were very discouraged on Wednesday night to see that he was still intubated and an extreme touch-me-not. I whispered quietly to him that I loved him in hopes that hearing my voice would help him but it made his sats drop really low. I cried. What happened to my cuddle bug?? What happened to my sweet little boy? Here he was laying, completely miserable and very very touchy with a tube once again down his throat. I felt like it was December all over again. I did have a positive note to help me smile a little. I have gotten the clear to attempt nursing Bryce once a day. Last night with our first attempt, he nursed like a champ. I am very thankful for that major blessing amidst the chaos.
This morning I called for an update on Grant and his nurse said they were going to attempt to extubate him and see if that helped him a bit. At 11:30am he was extubated but after a lot of bagging and dropped sats, he was reintubated. They're discussing giving him steroids and restarting caffeine to see if we cant get him off the ventilator. Paul and I are completely discouraged by how things have gone backwards and I have had cried quite a bit in the past few days but we know and believe that he is in God's hands and he will rebound.
Please please pray for Grant's healing. Pray with us that he does not develop pneumonia or long term effects from this. I'm so ready to have my sons home with me. I'm so ready for my precious boys to finally be able to sleep soundly in our arms without having to put them back in isolates. I'm ready to not have to ask to hold them or touch them.
Grant and Bryce had been doing spectacularly this past week. They were both gaining weight and eating like champs. Grant began bottle feeding and was actually doing better than big brother who'd been bottle feeding for a couple of weeks. We began talking about the things that were needing to take place before they go to care-by-parent and then home. Then everything came to a crashing halt with Grant on Tuesday. Last week both boys had their routine eye exams. Bryce's are premature but ok so far. Grant has retinopathy and plus disease (I will post links to explain later) and they decided to repeat his eye exam on Monday. Monday morning the pediatrician looked at his eyes and decided that he may need surgery and wanted Dr. Essmon, the neo-surgeon, to take a look and give his opinion on Tuesday. Its not a super intensive surgery. They do it in the NICU. On Tuesday morning I received a call that they were doing the surgery at noon. In the middle of the worst blizzard since 1912 we headed up to the hospital to be with the boys.
When we arrived in the NICU after a very snowy drive Grant had already been moved to the isolation room for surgery prepping while Bryce remained in their spot on the back row. We gave Grant a kiss before they intubated and went back to see Bryce. I chatted with the mom of triplets and a few of the nurses; all of us blissfully unaware what was taking place with Grant. During intubation, Grant decided he wanted no part of it and coded. He dropped his heart rate dangerously low and his oxygen saturation plummeted. They had to administer 6 minutes of chest compressions and two rounds of epinepherine to get him back up. I am in awe of how resilient infants are. If you or I had coded like that we'd be a vegetable; best case scenario. They had to very heavily sedate him to do the surgery but the procedure, though taking three times as long as anticipated, went well.
Through the night, Grant began dropping his heart rate and sats more and more often. He wasn't supposed to be on the vent for more than 2 or 3 hours after intubation but due to the severity of his events, he remained on it through the night. They were able to wean his pressure settings some that night and into Wednesday but as his events became more severe, his settings had to go back up. Paul and I were very discouraged on Wednesday night to see that he was still intubated and an extreme touch-me-not. I whispered quietly to him that I loved him in hopes that hearing my voice would help him but it made his sats drop really low. I cried. What happened to my cuddle bug?? What happened to my sweet little boy? Here he was laying, completely miserable and very very touchy with a tube once again down his throat. I felt like it was December all over again. I did have a positive note to help me smile a little. I have gotten the clear to attempt nursing Bryce once a day. Last night with our first attempt, he nursed like a champ. I am very thankful for that major blessing amidst the chaos.
This morning I called for an update on Grant and his nurse said they were going to attempt to extubate him and see if that helped him a bit. At 11:30am he was extubated but after a lot of bagging and dropped sats, he was reintubated. They're discussing giving him steroids and restarting caffeine to see if we cant get him off the ventilator. Paul and I are completely discouraged by how things have gone backwards and I have had cried quite a bit in the past few days but we know and believe that he is in God's hands and he will rebound.
Please please pray for Grant's healing. Pray with us that he does not develop pneumonia or long term effects from this. I'm so ready to have my sons home with me. I'm so ready for my precious boys to finally be able to sleep soundly in our arms without having to put them back in isolates. I'm ready to not have to ask to hold them or touch them.
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