As I was browsing through the folder of pictures we have taken of the boys over the past 60 days, I am once again in awe of God's answers to prayer and the living proof of his miracles that I hold in my arms each night.
Two months ago the boys were both in critical condition; such tiny little babies who's cries were silenced by tubes into their lungs. I'd come home late at night after spending hours at their bedside only to see totes full of tiny baby boy clothes lined up against the wall in my room. I would push the sight out of my mind. We weren't sure these precious, incredibly tiny creatures were going to be coming home with us. As the days progressed, things at times were so grim that it felt unbearable. Seisures and brain bleeds, holes in the heart and very high oxygen requirements, desaturations and bradies... it was so overwhelming at times. God was always faithful to hear our cries and wrap His arms around the boys. The PDAs and PFOs closed without surgery, the brain bleeds stabilized and the seizures were brought under control. They were soon extubated to CPAPs and then nasal canulas. Their desaturations became less severe and the episodes of bradycardia occurred less often.
The boys continued to thrive and grow despite such large obstacles. They went from Giraffe isolates (special isolates for critical infants) to traditional isolates and then to open cribs. Then went from IV feedings of TPN and lipids to OG tube feeds and then NG tube feeds, full feeds and now feeds by bottle. They went from tiny two pound micro-preemies to sweet and chunky five pound newborn babies. From desatting just from sensing the isolate door opening to crying loudly until they are held and fed. My major "touch-me-not", Grant, has become my favorite cuddle bug. My sickest little boy, Bryce, has become the chunky one. :)
Time and time again I am in awe of God's faithfulness. In December I was terrified to even look at my precious babies' tiny clothes. Two months later I enjoy digging through their NEWBORN and 0-3 MONTH (WAHOO!!) clothes for outfits each day and have happily started putting up the preemie sleepers and preparing for their eventual homecoming. What wonderful blessings these little boys are!
We do have a new prayer request for the boys. Their eyes are checked every two weeks to monitor their development. This past Wednesday the physician was concerned by what he saw during Grant's exam. Both boys have Stage 1 Zone 2 retinopathy. Grant also has Plus Disease - a product of retinopathy. The worse case of Plus Disease is retinal detachment. Right now both of the boys are in the early stages and we are praying that God heals their eyes and that their vessel growth slows down to normal levels so that when they are rechecked on Monday & Wednesday, the physician says there's no need for the surgeon to come in and take a look at them. Please pray with us that God will step in an show himself again through the healing of our boys. He has answered our prayers for the boys over and over again and I know that He will take care of our precious babies as He always has.
Paul and Brooklyn are feeling much better and God-willing I will be able to ungarb (currently wearing mask, gloves & gown in order to see the boys) this coming week. I have gotten the clear to breastfeed Bryce, and hopefully Grant as well, and am so thankful for their continued progress with the bottle. God-willing, we will be able to bring them home as soon as the end of February which would make my heart soar! I give my Father all the praise for what precious miracles these two precious twin boys are and how much I have learned and grown through their NICU journey. The devil can throw everything he wants at us but my God always perseveres!!
Sunday, January 30, 2011
Thursday, January 27, 2011
RSV & Pneumonia, Oh My!
Yes, we have a house full of sickies. Raegan was first with bronchitis. Brooklyn soon followed with RSV and pneumonia. What a roller coaster week it has been! Sunday morning we decided to take Brooklyn in after repeated breathing treatments weren't helping with her wheezing, coughing & listless behavior. We got word - through the NICU - that Brooke was diagnosed with RSV. We were NOT happy that ER never told us that she had RSV but that's a story for another day.
RSV is a rather mild illness in older children and adults that usually presents itself as a cold. In younger children, however, it can be a bit more severe with pneumonia often following (as in Brooke's case). With premature infants, especially those with chronic lung disease like the twins, it can be frightening. Because I had been exposed to it, I had to wear a mask and gown in order to hold the boys and was able to come in to the NICU as long as I wasn't showing any cold symptoms. Monday, it hit me and I was in bed all afternoon. This meant that I couldn't come in to see the boys. I was devastated. I called the NICU that night to let them know I wasn't going to be coming in and to check up on the boys. Both were doing great and were not showing signs of RSV despite my holding them that Sunday before Brooke's diagnosis. Such a praise.
By Tuesday I was feeling much better. I called and spoke with Jenni (NP) to see what the incubation period was for RSV so that I knew when I could return and what the protocol would be at that point. The doctors had decided that I could come in and interact with the twins once my cold symptoms went away as long as I wore a mask, gloves and a gown. Brooklyn was beginning to show signs of feeling better by this point. She still has a nasty cough but the high fever and listlessness were gone. I was still leery of being in close contact with the boys so I kept my visit to the NICU very brief and avoided contact with them.
Brooklyn has continued to improve and has gone from needing the nebulizer every 4-6 hours to only needing it once a day; usually in the morning. I called the NICU this afternoon to see how the boys had done the previous night and learned that Ashley (OT) would be sitting down with Grant tonight and provided he was alert, would attempt his first bottle feeding. What a praise it was to get that news!! Bryce has been attempting bottle feeds for about a week but Grant has not shown any signs of interest until the past few days.
This evening I headed to the NICU for their 8/9 pm feeds. After a thorough scrubbing, I grabbed mask & gown and headed to their bedside. How big they've gotten!! Bryce is now 5 lbs even and Grant is 1 oz short of 5 lbs. They look like normal newborns at this point! Ashley sat down with Grant to see how he'd do with the bottle and he took 10 mls; 1/4 of his full feeds! What a blessing! While Ashley fed Grant she asked me if I planned on breastfeeding. As soon as I get the clear as far as RSV is concerned, I can attempt nursing Bryce since he does so well on the bottle! That made my day! I talked again with Jenni about the incubation period and they're going to call the CDC to find out the incubation time for RSV so we know how long I need to stay suited up. God-willing, that time will fly. The next time I am cleared to do skin-to-skin with the boys, I will be able to nurse my baby boy for the first time, provided he is alert for the feeding! What a blessing!!
Please pray that the illness that has shrouded our home leaves quickly, that Bryce does well at the breast and that Grant and Bryce both continue to improve on the bottle. We have come so far in the past 8 weeks. God-willing, we will be able to bring these precious boys home where they belong in the next 4-6 weeks!!
RSV is a rather mild illness in older children and adults that usually presents itself as a cold. In younger children, however, it can be a bit more severe with pneumonia often following (as in Brooke's case). With premature infants, especially those with chronic lung disease like the twins, it can be frightening. Because I had been exposed to it, I had to wear a mask and gown in order to hold the boys and was able to come in to the NICU as long as I wasn't showing any cold symptoms. Monday, it hit me and I was in bed all afternoon. This meant that I couldn't come in to see the boys. I was devastated. I called the NICU that night to let them know I wasn't going to be coming in and to check up on the boys. Both were doing great and were not showing signs of RSV despite my holding them that Sunday before Brooke's diagnosis. Such a praise.
By Tuesday I was feeling much better. I called and spoke with Jenni (NP) to see what the incubation period was for RSV so that I knew when I could return and what the protocol would be at that point. The doctors had decided that I could come in and interact with the twins once my cold symptoms went away as long as I wore a mask, gloves and a gown. Brooklyn was beginning to show signs of feeling better by this point. She still has a nasty cough but the high fever and listlessness were gone. I was still leery of being in close contact with the boys so I kept my visit to the NICU very brief and avoided contact with them.
Brooklyn has continued to improve and has gone from needing the nebulizer every 4-6 hours to only needing it once a day; usually in the morning. I called the NICU this afternoon to see how the boys had done the previous night and learned that Ashley (OT) would be sitting down with Grant tonight and provided he was alert, would attempt his first bottle feeding. What a praise it was to get that news!! Bryce has been attempting bottle feeds for about a week but Grant has not shown any signs of interest until the past few days.
This evening I headed to the NICU for their 8/9 pm feeds. After a thorough scrubbing, I grabbed mask & gown and headed to their bedside. How big they've gotten!! Bryce is now 5 lbs even and Grant is 1 oz short of 5 lbs. They look like normal newborns at this point! Ashley sat down with Grant to see how he'd do with the bottle and he took 10 mls; 1/4 of his full feeds! What a blessing! While Ashley fed Grant she asked me if I planned on breastfeeding. As soon as I get the clear as far as RSV is concerned, I can attempt nursing Bryce since he does so well on the bottle! That made my day! I talked again with Jenni about the incubation period and they're going to call the CDC to find out the incubation time for RSV so we know how long I need to stay suited up. God-willing, that time will fly. The next time I am cleared to do skin-to-skin with the boys, I will be able to nurse my baby boy for the first time, provided he is alert for the feeding! What a blessing!!
Please pray that the illness that has shrouded our home leaves quickly, that Bryce does well at the breast and that Grant and Bryce both continue to improve on the bottle. We have come so far in the past 8 weeks. God-willing, we will be able to bring these precious boys home where they belong in the next 4-6 weeks!!
Thursday, January 20, 2011
The Longest Stretch
We are in the longest stretch of the NICU stay - learning to eat by mouth (PO feeding). Anyone that has had NICU time knows that this wait can be somewhat agonizing. All of the major health hurdles like PDAs, brain bleeds, intubation, etc. are all behind you and the only thing you're waiting for is that light bulb to turn on for feeding by bottle/breast. It can feel like an eternity. I have to keep reminding myself that a) we really are in the home stretch and b) they will get it down sooner than later.
To all who have asked if there is any word as to how much longer before they come home, I think we're still sitting at anywhere from 4-8 weeks, depending on how well they pick up on feeding. They could pick it up quickly and be home by their due date of February 18th or they could struggle to pick it up and be home some time in March. Right now, we're thinking closer to 6-7 weeks and if they come home before then, what a praise!
Bryce weighs 4 pounds 6 ounces. He has finally gotten the green light to try PO feeding and so far has done well. He can try up to two times a day, provided that he's alert and showing interest (rooting). He fed once on Monday, taking 7 mls by mouth (a full feed for him is 38 mls). On Tuesday, he took 5 mls. Last night, he took 11 mls for Paul. This was the first time either of us had fed him. What a blessing to have him do so well for us!!
Grant weighs 4 pounds 6 ounces as well, just about 20 grams behind his brother. He is up to 35 mls per feeding but is still getting full feeds by NG tube as he hasn't shown that he's ready to try bottle feeding. Please pray with us that he will continue to improve with his pacifier and show the signs of readiness soon so that we can start him on PO feeding as well. The signs of readiness are being alert, rooting, maintaining a relaxed state when being held. Right now, he gets the hiccups or shakes a bit when he's brought out to be weighed or held - a sign that he's not yet ready.
Overall, both boys are doing very well. Both have had to be transfused in the past week but that is still to be expected as such young preemies. They are doing so well at gaining weight and are looking so much more like normal newborns, albeit still tiny in comparison to full termers. Paul and I are so blessed to be able to see such progress and growth in them each week. I have been struggling a tiny bit emotionally as I think I've just been running a little low on good sleep. I'm very ready to be able to have them home with me where I can see them 24/7 instead of once a day. I look forward to being able to cuddle them in my arms without having to put them down just 30 minutes to an hour later. They will be home before we know it and I just need to remember to give God all the glory for their improvements and be patient that they will be home in time, healthy and beautiful, even if its on noisy apnea monitors. ;)
To all who have asked if there is any word as to how much longer before they come home, I think we're still sitting at anywhere from 4-8 weeks, depending on how well they pick up on feeding. They could pick it up quickly and be home by their due date of February 18th or they could struggle to pick it up and be home some time in March. Right now, we're thinking closer to 6-7 weeks and if they come home before then, what a praise!
Bryce weighs 4 pounds 6 ounces. He has finally gotten the green light to try PO feeding and so far has done well. He can try up to two times a day, provided that he's alert and showing interest (rooting). He fed once on Monday, taking 7 mls by mouth (a full feed for him is 38 mls). On Tuesday, he took 5 mls. Last night, he took 11 mls for Paul. This was the first time either of us had fed him. What a blessing to have him do so well for us!!
Grant weighs 4 pounds 6 ounces as well, just about 20 grams behind his brother. He is up to 35 mls per feeding but is still getting full feeds by NG tube as he hasn't shown that he's ready to try bottle feeding. Please pray with us that he will continue to improve with his pacifier and show the signs of readiness soon so that we can start him on PO feeding as well. The signs of readiness are being alert, rooting, maintaining a relaxed state when being held. Right now, he gets the hiccups or shakes a bit when he's brought out to be weighed or held - a sign that he's not yet ready.
Overall, both boys are doing very well. Both have had to be transfused in the past week but that is still to be expected as such young preemies. They are doing so well at gaining weight and are looking so much more like normal newborns, albeit still tiny in comparison to full termers. Paul and I are so blessed to be able to see such progress and growth in them each week. I have been struggling a tiny bit emotionally as I think I've just been running a little low on good sleep. I'm very ready to be able to have them home with me where I can see them 24/7 instead of once a day. I look forward to being able to cuddle them in my arms without having to put them down just 30 minutes to an hour later. They will be home before we know it and I just need to remember to give God all the glory for their improvements and be patient that they will be home in time, healthy and beautiful, even if its on noisy apnea monitors. ;)
Wednesday, January 12, 2011
An End In Sight
God is so good to us!! Our boys are doing so good these past few weeks and it has been incredible to watch them progress.
Bryce is weighing in at 3 pounds 13 ounces. He is on full bolus feeds and yesterday was switched from an OG tube to an NG tube (through the nose) so that he can suck his pacifier easier - a step closer to bottle feeding. :) Grant weighs 3 pounds 11 ounces. He is on full feeds as well, though on OG still. Both boys are breathing with a nasal canula as the only assistance (giving a small puff of air every so often). Grant was on CPAP until Monday when they decided to alternate between CPAP and the nasal canula. By Tuesday, he was doing so well on the canula that they discontinued use of the CPAP. What a blessing! They have both improved so much in the past six weeks! Both boys several times yesterday were doing so well that they were able to shut the oxygen off for a couple of hours at a time and let the boys breathe completely on their own. God willing, they will able to completely wean from O2 assistance before they're discharged! :)
We've been able to hold both boys skin-to-skin since shortly after Christmas. Paul and I go up to the NICU for their 8 o'clock assessment and hold the boys through their feeds. We have both thoroughly enjoyed cuddling our little men and they greatly enjoy being cuddled! Monday night I got a very special treat - I was able to hold them both at the same time! I cannot explain the feeling of holding both the boys at the same time. It was truly priceless to see both of them resting peacefully against my chest. I didn't want to put them back in their isolates. They are such precious miracles and I am so amazed and in awe that both of these tiny baby boys are my sons. I have TWO sweet infants to love on and watch grow into Godly men. My heart is full to overflowing with such wonderful blessings!
From here on out, the boys are just working on gaining weight, maintaining their temperature on their own and taking their entire feeds from a bottle. It is awesome to finally have an end in sight to this NICU roller coaster ride! Please pray with us that God will open the doors for us to bring them home the end of February or beginning of March. I'm so ready to have those boys home and be able to hold them and not have to put them back into an isolate!!
Bryce is weighing in at 3 pounds 13 ounces. He is on full bolus feeds and yesterday was switched from an OG tube to an NG tube (through the nose) so that he can suck his pacifier easier - a step closer to bottle feeding. :) Grant weighs 3 pounds 11 ounces. He is on full feeds as well, though on OG still. Both boys are breathing with a nasal canula as the only assistance (giving a small puff of air every so often). Grant was on CPAP until Monday when they decided to alternate between CPAP and the nasal canula. By Tuesday, he was doing so well on the canula that they discontinued use of the CPAP. What a blessing! They have both improved so much in the past six weeks! Both boys several times yesterday were doing so well that they were able to shut the oxygen off for a couple of hours at a time and let the boys breathe completely on their own. God willing, they will able to completely wean from O2 assistance before they're discharged! :)
We've been able to hold both boys skin-to-skin since shortly after Christmas. Paul and I go up to the NICU for their 8 o'clock assessment and hold the boys through their feeds. We have both thoroughly enjoyed cuddling our little men and they greatly enjoy being cuddled! Monday night I got a very special treat - I was able to hold them both at the same time! I cannot explain the feeling of holding both the boys at the same time. It was truly priceless to see both of them resting peacefully against my chest. I didn't want to put them back in their isolates. They are such precious miracles and I am so amazed and in awe that both of these tiny baby boys are my sons. I have TWO sweet infants to love on and watch grow into Godly men. My heart is full to overflowing with such wonderful blessings!
From here on out, the boys are just working on gaining weight, maintaining their temperature on their own and taking their entire feeds from a bottle. It is awesome to finally have an end in sight to this NICU roller coaster ride! Please pray with us that God will open the doors for us to bring them home the end of February or beginning of March. I'm so ready to have those boys home and be able to hold them and not have to put them back into an isolate!!
Monday, January 3, 2011
Progress
So what has gone on in the past 8 or so days? Lets see.....
Both of the boys are doing good. They weigh in at 3 lbs 6 oz. Bryce was extubated on Sunday the 27th and put on CPAP. He did so well that by late Wednesday, he was put on nasal canula. Grant was extubated on Tuesday and was switched to nasal canula on Friday morning. He has since then returned back to CPAP after wearing out on nasal canula but both are doing well at working towards fully breathing on their own.
Grant had a bit of a rough time last week. On Christmas day, his nurses began noticing bowel loops - a sign of dilation (swelling) of the intestinal wall. While doing his assessment on Sunday night (the 26th), his nurse found blood in his poop. He went NPO and was switched back to the TPN and lipids while they did further testing. NEC was the preliminary diagnosis. X-rays were ordered every 4 hours and antibiotics were started. The following day, they also put a suction tube down into his stomach to drain excess air and fluids that may have been causing the dilation. NEC can be quite a serious issue so they watched him very closely. By Monday evening, his x-rays were looking better and no visible blood was found in his stools after the initial find on Sunday night. The original plan was to wait 7-10 days before reintroducing feeds if all went well but he improved so quickly that feeding was started back up on Friday afternoon. He is now up to 5.5 mls every hr; going up by 1 ml every 12 hrs.
Bryce is on full feeds as of Saturday and his TPN & Lipids were discontinued. He's at 10.5 mls an hour. In the coming days they will begin switching him from continuous feeds to bolus feeds; the step before trying oral feeds. He has been having episodes of rapid breathing and the occasional brady episode but has done well enough to remain on the nasal canula for the time being. Both of the boys are growing so much and looking more and more like little newborns and less like little old men. :)
This past week both of their UAC lines stopped working and were removed. On Wednesday I was able to hold them both for the first time. I was so excited to be able to hold them that I was absolutely giddy on the way to the hospital that evening. They both did an awesome job of making their mama feel absolutely special! Once settled into my arms, their breathing slowed and their O2 levels went way up... such an awesome thing. They enjoyed being held as much as I enjoyed holding them! Paul was able to hold Bryce for the first time on Friday night and will be going back up this evening to hold him again. :) The boys still have a little ways to go but they've come such a long way in the past month. A month..... I cannot believe that my sweet boys are a month old already!! How far they've come in that month! We went from wondering whether or not our sweet boys would make it to talking about full feeds, gaining enough weight to start wearing outfits, etc. What an answer to prayer!! If they come home around their due date, which is not unreasonable to think will happen at this point, they will be coming home this coming month! How awesome to be able to say that!!!
Right now we're focusing on them gaining weight and feeding via transpiloric and then OG tube, as well as getting Grant switched back over to nasal canula as he can tolerate it. Praise God that we are not having to worry about ventilators any longer! The boys have eye exams and Grant has his next head ultrasound this coming Monday (the 10th). Please continue to pray that the boys will improve and will handle full feeds by OG in the coming weeks, that they will continue to grow and that February will be the month we will be able to bring our boys home.
Both of the boys are doing good. They weigh in at 3 lbs 6 oz. Bryce was extubated on Sunday the 27th and put on CPAP. He did so well that by late Wednesday, he was put on nasal canula. Grant was extubated on Tuesday and was switched to nasal canula on Friday morning. He has since then returned back to CPAP after wearing out on nasal canula but both are doing well at working towards fully breathing on their own.
Grant had a bit of a rough time last week. On Christmas day, his nurses began noticing bowel loops - a sign of dilation (swelling) of the intestinal wall. While doing his assessment on Sunday night (the 26th), his nurse found blood in his poop. He went NPO and was switched back to the TPN and lipids while they did further testing. NEC was the preliminary diagnosis. X-rays were ordered every 4 hours and antibiotics were started. The following day, they also put a suction tube down into his stomach to drain excess air and fluids that may have been causing the dilation. NEC can be quite a serious issue so they watched him very closely. By Monday evening, his x-rays were looking better and no visible blood was found in his stools after the initial find on Sunday night. The original plan was to wait 7-10 days before reintroducing feeds if all went well but he improved so quickly that feeding was started back up on Friday afternoon. He is now up to 5.5 mls every hr; going up by 1 ml every 12 hrs.
Bryce is on full feeds as of Saturday and his TPN & Lipids were discontinued. He's at 10.5 mls an hour. In the coming days they will begin switching him from continuous feeds to bolus feeds; the step before trying oral feeds. He has been having episodes of rapid breathing and the occasional brady episode but has done well enough to remain on the nasal canula for the time being. Both of the boys are growing so much and looking more and more like little newborns and less like little old men. :)
This past week both of their UAC lines stopped working and were removed. On Wednesday I was able to hold them both for the first time. I was so excited to be able to hold them that I was absolutely giddy on the way to the hospital that evening. They both did an awesome job of making their mama feel absolutely special! Once settled into my arms, their breathing slowed and their O2 levels went way up... such an awesome thing. They enjoyed being held as much as I enjoyed holding them! Paul was able to hold Bryce for the first time on Friday night and will be going back up this evening to hold him again. :) The boys still have a little ways to go but they've come such a long way in the past month. A month..... I cannot believe that my sweet boys are a month old already!! How far they've come in that month! We went from wondering whether or not our sweet boys would make it to talking about full feeds, gaining enough weight to start wearing outfits, etc. What an answer to prayer!! If they come home around their due date, which is not unreasonable to think will happen at this point, they will be coming home this coming month! How awesome to be able to say that!!!
Right now we're focusing on them gaining weight and feeding via transpiloric and then OG tube, as well as getting Grant switched back over to nasal canula as he can tolerate it. Praise God that we are not having to worry about ventilators any longer! The boys have eye exams and Grant has his next head ultrasound this coming Monday (the 10th). Please continue to pray that the boys will improve and will handle full feeds by OG in the coming weeks, that they will continue to grow and that February will be the month we will be able to bring our boys home.
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