I have spent the past few weeks in a blur. Ophthalmologists, pediatrician, sleep disorder physician, home health nurse, speech therapist.... Have I forgetten anyone? We have had appointment after appointment after appointment. Add to that banking, pharmacy and grocery runs, laundry, vacuuming, cooking, and taking care of six children and you have one very exhausted woman.
I have been completely wrapped up in my own little world lately; completely lost within my list of daily appointments and chores. I have wondered on a constant basis if this is all that my life consists of. I've been whining, complaining and even begging for some time off. I have definitely been productive these days. I am a very busy mother and wife. Yet I am realizing how quickly I've forgotten how big I'm blessed.
Not too long ago, a good friend of mine (and fellow NICU/multiples mom) texted me and asked for prayer for a friend. Her friend had given birth at 31 weeks. The precious baby lived only 5 1/2 hours and then was taken to heaven. I read her text for prayer and cried. Here I have been, completely consumed with all that is going on in my life, and completely forgetting how precious these lives I'm caring for really are. In the midst of all the madness, I forget to say thank you to our Heavenly Father for blessing me with such beautiful children.
Morning comes so quickly in this house lately. Bryce wakes numerous times during the night to nurse. Brooklyn has been a restless sleeper and even the older girls have been a bit off with their sleep patterns lately. This has made for very interesting dynamics in this house. Fussy toddlers, screeching and whiny preschoolers, argumentative little girls. I have found myself wanting to run away from it all for just a little while. Yet again, I'm reminded that God has blessed me mightily. I have a beautiful near preteen (10 in Sept - oh my gosh!!) who loves to help, is always striving to do her best and has such a beautiful heart. I have a sweet five year old who loves life. She is passionate about all that she does. Loving and energetic, she fills the room with smiles. Then there's Raegan. Sweet, ornery Raegan. What a spit fire that child is!! Always so much expression on that little girl's face!! She makes me roll with laughter at her antics. Then there is our miracle baby #1. She is such a precious little one. Always babbling and getting into something. Grabbing a book and plopping down to carefully look through it's pages - such a precious sight to watch. Bryce and Grant.... What miracles!! There was a time when we were not sure we'd ever take them home yet home they are! It has been so incredible to watch them grow and develop. They are two tiny, constant reminders of God's mercy and grace. Each time I find myself getting lost in frustration with my never ending to-do list, I am reminded of these blessings - and so many more - and find myself feeling foolish for complaining about such trivial things.
So instead of stressing over the things left undone today, or complaining about the lack of sleep, I need to count the many blessings God has poured out on me and press on. Embrace the life God has given you. All too quickly it can pass you by.
I have been challenged by the fact that I get so wrapped up in my own little world that I neglect the ones around me. As much as I would like to get out and do things to help others, right now my hands are already full to over flowing. Yet I always have spare minutes that I can use to drop a note to someone and thank them for their friendship, for their help, or just to see how they are doing. I am never so busy that I can't stop to pray when God lays someone on my heart. Yet most days I find myself so buried in my own thoughts that I don't take time for anyone else. I need to stop missing opportunities to say hi, thank you or I love you to those around me. Without those people that God has placed into my life, I would be an utter mess.
Thank you to everyone that prayed continuously for our boy's healing. Thank you to all of you who brought us meals. Thank you for your friendships. For the late night IHOP or McDonaldS trips just to talk. For the days of hanging out in the back yard in the heat of the summer with a lounge chair and a water hose, having fun spraying the girls as they ran around in their bathing suits. I truly am blessed! Thank you, Father, for such sweet reminders!
Saturday, April 9, 2011
Monday, March 28, 2011
Never A Dull Moment
Like I need proof that I'm missing a few screws! One day it will be funny to look back and read all of my scatterbrained moments and laugh.
Today was just more proof that children eat your brain cells in utero. I have had a horrible time of arriving anywhere at the time I'm supposed to. If my appointment is for 12:00, be assured that I won't get there before 12:10. This morning, however, I was actually running on time. The boys were in their car seats, albeit quite upset about it, Raegan was ready to go as my little helper, the diaper bag was packed and Grant's HAM was packed up. All I needed to do was spritz my hair with a little water to tame the frizz and I was good to go. I wandered into my bathroom in search of our spray bottle but was unsuccessful in locating it. I decided to check the girls' bathroom as they often borrow things from mine. While I didn't find ours, I did find a little one that would work. I needed to get going so as not to be late like every other day. As I began spraying my hair a smell filled the air. Was that... Easter eggs?? Pickles?? And then it hit me. This tiny spray bottle was NOT just filled with water. It was the spray bottle we use for cleaning mirrors; water mixed with vinegar.
There I stood, completely ready to go aside from one minor detail: I smelled like a freshly died Easter egg. Gag! I quickly threw my head under the tub faucet and did a quick wash to remove the offending odor. I neglected to notice that my sweater still smelled of vinegar. Off I went, now late as always, with my three year old asking me from the back seat what that smell was. Sigh. At least Grant's nurse got a good chuckle out of it!
Today was just more proof that children eat your brain cells in utero. I have had a horrible time of arriving anywhere at the time I'm supposed to. If my appointment is for 12:00, be assured that I won't get there before 12:10. This morning, however, I was actually running on time. The boys were in their car seats, albeit quite upset about it, Raegan was ready to go as my little helper, the diaper bag was packed and Grant's HAM was packed up. All I needed to do was spritz my hair with a little water to tame the frizz and I was good to go. I wandered into my bathroom in search of our spray bottle but was unsuccessful in locating it. I decided to check the girls' bathroom as they often borrow things from mine. While I didn't find ours, I did find a little one that would work. I needed to get going so as not to be late like every other day. As I began spraying my hair a smell filled the air. Was that... Easter eggs?? Pickles?? And then it hit me. This tiny spray bottle was NOT just filled with water. It was the spray bottle we use for cleaning mirrors; water mixed with vinegar.
There I stood, completely ready to go aside from one minor detail: I smelled like a freshly died Easter egg. Gag! I quickly threw my head under the tub faucet and did a quick wash to remove the offending odor. I neglected to notice that my sweater still smelled of vinegar. Off I went, now late as always, with my three year old asking me from the back seat what that smell was. Sigh. At least Grant's nurse got a good chuckle out of it!
Friday, March 25, 2011
Missing: Mommy's Marbles
Can I begin by saying that I'm so very, very grateful for my mother being here to help out? I'd be a huge basket case if it weren't for her. We are busy each week with doctors appointments, staggered feedings and the chaos that comes with being a family of 8 with 4 three years of age and younger. We have weekly speech therapy for both boys to monitor their ability to take a bottle. As crazy as it may sound to some, it is a huge help. Grant has a very unorganized suck and can take up to 40 minutes to drink 2 1/2 ounces. He has improved greatly this week with his volume and is now taking up to 3 1/2 ounces at a time. Bryce was doing very good at taking 3-4 ounces at a time but has struggled to increase his weight. This week we increased his calorie intake to 28 calories to compensate for the number of times that he nurses, rather than taking the bottle.
I don't know if I mentioned it previously but both of the boys require higher calories due to their severe prematurity. Breast milk and "normal" formula is 20 calories. Grant is currently on 26 calories and gains between 1/2 - 1 ounce a day. Bryce had also been on 26 calories but he's been struggling to put on even a 1/4 of an ounce a day. The problem is not something that I would ever have considered a problem up until the twins' birth - nursing. Both of the boys are getting to the point where they'd rather nurse than bottle feed. Grant will nurse about 3-4 times a day but easily takes his bottle when it is offered. It takes 3-5 minutes to get him to latch on a times but once he does, he's good about emptying it. Bryce, however, is losing interest in the bottle. We have to really work with him to take even 2 ounces from the bottle in the past few days. It is absolutely AWESOME that micro preemie twins with as many issues as they had preferring the breast over the bottle but poor Bryce really needs those extra calories from the formula that I can't give him with breast milk. We have ST (speech therapy) on Tuesday and hopefully they will be able to guide me on what to do regarding this. Upping his calories was a good start but if he's not taking the bottle, it doesn't do a lot of good.
Other than feeding, both boys are doing very well. Grant sleeps up to 9 hours at night and does a fantastic job of making up for it in his feeds during the day. Bryce has been waking up every 2 hours to feed at night which is typical for a breast fed newborn. Both are beginning to focus on us when we're holding them or talking to them. They are also beginning to track us if they hear us talking as we cross the room. Grant is up to 8 pounds even and Bryce is 7 pounds 4 ounces. They are still dinky but they seem so big to me considering how tiny those little boys were when they first entered the world!! Bryce and Grant (especially Grant) are also starting to coo and I swear that I've never heard anything sweeter in all of my life. These boys are such precious miracles!!
Since bringing the boys home from the hospital, we've been looking for another mode of transportation. Our minivan, while awesome, only holds 7 passengers. It also only held 3 car seats so it has been impossible to go anywhere with the girls during the week. This is yet another reason I'm terribly grateful for my mother. I only have room in the van for the boys plus Brooklyn so whenever the boys have a doctors appointment or I need to run an errand, mom watches the girls while I take the boys. It has made things a lot easier. However, we ARE going to have to be able to go as a family at some point and driving two vehicles to go anywhere is certainly not cost effective. We were blessed yesterday to be able to find a tank...er.... large vehicle for a great price and in great condition with low miles that fits all 8 of us comfortably. *I am still reeling from the thought that there are 8 of us in this family, btw* We bought a Ford Expedition. I swore I'd never go back to a domestic and certainly NEVER own a Ford (gasp) but it runs well and we can all go places as a family so I can suck it up, I guess. LOL
So why the title? Well, it has been quite an adjustment having two infants in the house, in addition to Brooklyn who is still a baby herself, and her three older sisters. And trying to figure out a way to get the whole family from point A to point B has been an interesting journey. However, the biggest adjustment for me is the acceptance of the fact that I'm just not all there right now with all that is going on. This morning I had an appointment for a much needed trim. I brought Grant and Raegan with me and left the younger 3 at home. When everyone asked which one of the twins I had, I of course said Grant. However, each time I'd talk about him after that, I'd call him Bryce. Earlier in the month I had a prescription called in for Bryce to our local pharmacy. For some reason, the prescription was filled under Grant's name instead of Bryce's. While they were in the middle of switching things over to Bryce, they asked for his insurance card to make sure that it was filed properly. I promptly handed them Grant's insurance card and yes, I knew it was Grant's when I handed it over. Confused the poor lady comes back and apologizes for all the confusion and told me that the script had been filled for the right baby after all. How foolish did I look when the light bulb came on and I had to explain that it was filled for the wrong baby and I just gave her the wrong insurance card. There have been times that I can't even remember my own name from being pulled in 38 different directions during the day. I know that this is just part of adjusting to life as a mom of 6 - 2 of which have special needs. But good gracious, how I'd love to have a few of those brain cells back! Its absolutely embarrassing some of the stupid things that I do and its always when I have none of the kids with me to explain away the complete airheadedness. Most people must think I have more than a few marbles loose. Sigh. I will be so happy when some of those marbles find their way home. I know. You don't have to tell me - to some extent, I will always be a few Fruit Loops short of a full bowl - but I know that at least SOME of those brain cells will become functional again once the kids are a little older and sleeping for 3 hours solid is not a luxury.
I read over my blogs since the boys' homecoming and have to sigh. I've gone from formulated thoughts to lots of ramblings and rabbit trails. Ah well. At least you have some good reading material if you desperately need to sleep but can't. Read my craziness and you'll conk right out! ;) Seriously though, I wouldn't trade one lost night's sleep or brain cell for the fact that both of these boys are home from the hospital and are beautiful, healthy and growing little babies! As much as I'd like to, I have no right to complain. Each night when I go to bed, I get to kiss two gifts from God (well, technically SIX!!). :)
*Correction (and proof that I'm a few marbles short): We bought an Excursion NOT an Expedition.
I don't know if I mentioned it previously but both of the boys require higher calories due to their severe prematurity. Breast milk and "normal" formula is 20 calories. Grant is currently on 26 calories and gains between 1/2 - 1 ounce a day. Bryce had also been on 26 calories but he's been struggling to put on even a 1/4 of an ounce a day. The problem is not something that I would ever have considered a problem up until the twins' birth - nursing. Both of the boys are getting to the point where they'd rather nurse than bottle feed. Grant will nurse about 3-4 times a day but easily takes his bottle when it is offered. It takes 3-5 minutes to get him to latch on a times but once he does, he's good about emptying it. Bryce, however, is losing interest in the bottle. We have to really work with him to take even 2 ounces from the bottle in the past few days. It is absolutely AWESOME that micro preemie twins with as many issues as they had preferring the breast over the bottle but poor Bryce really needs those extra calories from the formula that I can't give him with breast milk. We have ST (speech therapy) on Tuesday and hopefully they will be able to guide me on what to do regarding this. Upping his calories was a good start but if he's not taking the bottle, it doesn't do a lot of good.
Other than feeding, both boys are doing very well. Grant sleeps up to 9 hours at night and does a fantastic job of making up for it in his feeds during the day. Bryce has been waking up every 2 hours to feed at night which is typical for a breast fed newborn. Both are beginning to focus on us when we're holding them or talking to them. They are also beginning to track us if they hear us talking as we cross the room. Grant is up to 8 pounds even and Bryce is 7 pounds 4 ounces. They are still dinky but they seem so big to me considering how tiny those little boys were when they first entered the world!! Bryce and Grant (especially Grant) are also starting to coo and I swear that I've never heard anything sweeter in all of my life. These boys are such precious miracles!!
Since bringing the boys home from the hospital, we've been looking for another mode of transportation. Our minivan, while awesome, only holds 7 passengers. It also only held 3 car seats so it has been impossible to go anywhere with the girls during the week. This is yet another reason I'm terribly grateful for my mother. I only have room in the van for the boys plus Brooklyn so whenever the boys have a doctors appointment or I need to run an errand, mom watches the girls while I take the boys. It has made things a lot easier. However, we ARE going to have to be able to go as a family at some point and driving two vehicles to go anywhere is certainly not cost effective. We were blessed yesterday to be able to find a tank...er.... large vehicle for a great price and in great condition with low miles that fits all 8 of us comfortably. *I am still reeling from the thought that there are 8 of us in this family, btw* We bought a Ford Expedition. I swore I'd never go back to a domestic and certainly NEVER own a Ford (gasp) but it runs well and we can all go places as a family so I can suck it up, I guess. LOL
So why the title? Well, it has been quite an adjustment having two infants in the house, in addition to Brooklyn who is still a baby herself, and her three older sisters. And trying to figure out a way to get the whole family from point A to point B has been an interesting journey. However, the biggest adjustment for me is the acceptance of the fact that I'm just not all there right now with all that is going on. This morning I had an appointment for a much needed trim. I brought Grant and Raegan with me and left the younger 3 at home. When everyone asked which one of the twins I had, I of course said Grant. However, each time I'd talk about him after that, I'd call him Bryce. Earlier in the month I had a prescription called in for Bryce to our local pharmacy. For some reason, the prescription was filled under Grant's name instead of Bryce's. While they were in the middle of switching things over to Bryce, they asked for his insurance card to make sure that it was filed properly. I promptly handed them Grant's insurance card and yes, I knew it was Grant's when I handed it over. Confused the poor lady comes back and apologizes for all the confusion and told me that the script had been filled for the right baby after all. How foolish did I look when the light bulb came on and I had to explain that it was filled for the wrong baby and I just gave her the wrong insurance card. There have been times that I can't even remember my own name from being pulled in 38 different directions during the day. I know that this is just part of adjusting to life as a mom of 6 - 2 of which have special needs. But good gracious, how I'd love to have a few of those brain cells back! Its absolutely embarrassing some of the stupid things that I do and its always when I have none of the kids with me to explain away the complete airheadedness. Most people must think I have more than a few marbles loose. Sigh. I will be so happy when some of those marbles find their way home. I know. You don't have to tell me - to some extent, I will always be a few Fruit Loops short of a full bowl - but I know that at least SOME of those brain cells will become functional again once the kids are a little older and sleeping for 3 hours solid is not a luxury.
I read over my blogs since the boys' homecoming and have to sigh. I've gone from formulated thoughts to lots of ramblings and rabbit trails. Ah well. At least you have some good reading material if you desperately need to sleep but can't. Read my craziness and you'll conk right out! ;) Seriously though, I wouldn't trade one lost night's sleep or brain cell for the fact that both of these boys are home from the hospital and are beautiful, healthy and growing little babies! As much as I'd like to, I have no right to complain. Each night when I go to bed, I get to kiss two gifts from God (well, technically SIX!!). :)
*Correction (and proof that I'm a few marbles short): We bought an Excursion NOT an Expedition.
Tuesday, March 15, 2011
Week 1 Update
Taking care of six children is an interesting challenge. Can I just start out by saying that? Goodness. It has been an interesting adjustment since bringing Grant home this past Sunday (March, 5th). I am so thankful that I have my mother here to help or things would be in utter chaos; not that it isn't borderline chaos anyway.
Both of the twins are doing well. Bryce weighs 7 lbs even and is such a good eater. He is definitely a snuggler. I spent a good bit of last night holding him because he would fuss like crazy if you set him down. Spoiled, I know, but with a sweet face like his, how could I refuse? ;) He officially went wireless today!! Dr Rising, our pulmonologist, nixed the home apnea monitor (HAM) for him this morning. I cannot tell you how happy I am to be less one HAM. Our nightly routine for the past week has included several minutes of detangling HAMS and Grant's oxygen tubing. How they manage to get so tangled is beyond me. Grant is such a chunky monkey!!! He weighs in at a whopping 7 lbs 15.5 oz. He is by far the worst eater I've ever had but hopefully the weekly speech therapy will help with that. Speaking of which.... I cannot tell you how many goofy looks I get when I say the boys have speech therapy. We have them in speech therapy because they're not talking as clearly as we'd like them to. ;) In all seriousness, speech therapy is to work on their ability to suck well and effectively take a bottle. Poor oral control can lead to speech issues on down the road, believe it or not.
The girls are adjusting remarkably well with boy of the boys home. Morgan and Haidyn are a great help to us and love being little porters, bringing us diapers, wipes, burp cloths, whatever we need to keep the little men clean, fed and happy. :) We let them sit down and hold the boys once a day and they eat up that time with their brothers. Brooklyn is doing better now that both boys are home and we can devote more one-on-one time with her. She loves to cuddle up (ie sit on) her brothers so we have to keep the boys up away from her reach. Tummy time and bouncy seat usage is limited to Brooklyn's nap and meal times. LOL :)
Overall, it is going as smoothly as we can expect. Paul is a wonderful help with feeding the boys during the night and my mother helps me with them during the day. I cannot believe that the boys are both home and both doing so well. To think that they started out at just over 2 lbs a piece and are now chunky, happy and healthy between 7 & 8 pounds!
Both of the twins are doing well. Bryce weighs 7 lbs even and is such a good eater. He is definitely a snuggler. I spent a good bit of last night holding him because he would fuss like crazy if you set him down. Spoiled, I know, but with a sweet face like his, how could I refuse? ;) He officially went wireless today!! Dr Rising, our pulmonologist, nixed the home apnea monitor (HAM) for him this morning. I cannot tell you how happy I am to be less one HAM. Our nightly routine for the past week has included several minutes of detangling HAMS and Grant's oxygen tubing. How they manage to get so tangled is beyond me. Grant is such a chunky monkey!!! He weighs in at a whopping 7 lbs 15.5 oz. He is by far the worst eater I've ever had but hopefully the weekly speech therapy will help with that. Speaking of which.... I cannot tell you how many goofy looks I get when I say the boys have speech therapy. We have them in speech therapy because they're not talking as clearly as we'd like them to. ;) In all seriousness, speech therapy is to work on their ability to suck well and effectively take a bottle. Poor oral control can lead to speech issues on down the road, believe it or not.
The girls are adjusting remarkably well with boy of the boys home. Morgan and Haidyn are a great help to us and love being little porters, bringing us diapers, wipes, burp cloths, whatever we need to keep the little men clean, fed and happy. :) We let them sit down and hold the boys once a day and they eat up that time with their brothers. Brooklyn is doing better now that both boys are home and we can devote more one-on-one time with her. She loves to cuddle up (ie sit on) her brothers so we have to keep the boys up away from her reach. Tummy time and bouncy seat usage is limited to Brooklyn's nap and meal times. LOL :)
Overall, it is going as smoothly as we can expect. Paul is a wonderful help with feeding the boys during the night and my mother helps me with them during the day. I cannot believe that the boys are both home and both doing so well. To think that they started out at just over 2 lbs a piece and are now chunky, happy and healthy between 7 & 8 pounds!
Wednesday, March 9, 2011
Thirteen Weeks
Thirteen weeks ago, I was sitting in POD 2 of St Johns NICU staring at the smallest baby boys that I had ever laid eyes on. Bryce, weighing just 2 lbs 5 oz was extubated and breathing with the help of a SiPAP machine. Grant, weighing 2 lbs 9 oz was still intubated and showing his first signs of seizure activity. We had no idea what to expect. Would the boys even come home? Thursday, December 2nd we found out that Grant had a grade 2 brain bleed and was seizing, requiring phenobarbital. I was devastated. I remember hearing only the first few words of Jenni's explanation before my brain checked out. I had a good cry, gathered myself and then asked Jenni to reexplain what that brain bleed meant. Three days later, Bryce crashed and was reintubated. The drive to the hospital that night was unnerving. I wasn't sure what we were going to hear when we got to the NICU and my knees nearly buckled while waiting outside the NICU doors to be ok'd to enter. That night I came home and looked at the totes full of baby clothes, diapers and blankets piled up along the wall in our bedroom. I burst into tears wondering if we would ever be able to bring home these tiny baby boys. I was afraid that we'd never bring them home to our family. The next 4 weeks were heart wrenching. The boys were constantly up and down with their health. I slept with my phone under my pillow, terrified to answer when it would ring and "Unknown" would pop up knowing that it was likely the NICU.
January was better with both boys being extubated and both advancing towards bottle feeding. Then came February and a set back I never saw coming; Grant coded while being intubated for eye surgery. We spent another two weeks on pins and needles. I think that I broke down in the NICU more those two weeks than the rest of our NICU time combined. Once again I wondered if both twins would be coming home. Bryce improved enough that on Friday, February 11th we were able to bring him home seven days before his due date and just 2 days shy of daddy's birthday. What an awesome way that was to celebrate Paul's birthday! The next few weeks were a frustrating blur trying to get Grant to catch up to his brother and come home as well. Yet, through all of that, here we are with both boys home.
As we prepared to bring Grant home on Sunday, I was a crazy mix of emotions. DaNae, one of our favorite day time nurses brought the discharge papers into our Care-by-Parent room and we got pictures for the first time with she and both of the boys. She admitted Bryce (or was it Grant?); the first one to take care of him and the one who "caught" him after Dr Williams removed him from my belly. Becky was busy taking pictures of the boys on the bed as DaNae and I stood to the side and watched. I gave DaNae a hug and bawled. I cannot thank her enough for all that she did for us during the time Grant was struggling with seizures on the vent back in February. I would never have been able to make it through that week, or the weeks that followed, without her. Funny that I was so very ready to have the boys both home yet felt sad to leave the NICU and the incredible staff who work there. Becky and I bawled on eachother as Grant was loaded into the van to go home. I climbed in and looked back at the boys as we drove out of the parking lot. Again I bawled. We had BOTH boys in our van. No more late night visits to the NICU, no more dreaded calls or disheartening lab results. No more NEC scares, NG tubes or ventilators. No more alarming monitors, or screeching isolate temperature alarms.
Here we are, thirteen weeks after their birth and despite all of struggles, they are here, they are healthy and they are HOME. Home. I honestly wondered if that day would ever come. We have traded NICU visits to specialist appointments. Opthamologists and pulmonologists, pediatricians, occupational therapists, speech therapists, home-health nurses. Crazy med schedules and complicated formula concoctions. Three hour feeds and LONG nights. Yet I wouldn't trade a moment of it. God heard the many many cries for healing that were offered up for our precious boys and these tiny babies have become small miracles. I know what it feels like to ache to hear your baby cry. I know how it feels for your arms to ache to hold them. I can now hold them all day long if I wanted. I don't have to put them down and go home. They are home with me! I hear their sweet cries each day.
Bryce struggled when we first brought him home to eat and gain weight. We've upped his calorie count, added AR to his formula and propped up his bed and he is doing much better. He's even beginning to get the jowls that little brother has developed. Grant is doing good now that he is home and is eating a lot better than I expected. Its still a bit of a challenge to get him to eat during the night but he eats like a champ often during the day. They love to snuggle and love to be close to eachother. They are getting spoiled already because we don't want to put them down. But that's okay. We'll worry about that later. Right now I just want to enjoy every moment of them being home and hold them as often as they want. :D
Thank you all so very much for your prayers. Thank you for the many encouraging messages that you sent out to us to help lift us up when we were struggling to make it through the day. Who am I that God would hear our cries and b less us with such incredible miracles?
January was better with both boys being extubated and both advancing towards bottle feeding. Then came February and a set back I never saw coming; Grant coded while being intubated for eye surgery. We spent another two weeks on pins and needles. I think that I broke down in the NICU more those two weeks than the rest of our NICU time combined. Once again I wondered if both twins would be coming home. Bryce improved enough that on Friday, February 11th we were able to bring him home seven days before his due date and just 2 days shy of daddy's birthday. What an awesome way that was to celebrate Paul's birthday! The next few weeks were a frustrating blur trying to get Grant to catch up to his brother and come home as well. Yet, through all of that, here we are with both boys home.
As we prepared to bring Grant home on Sunday, I was a crazy mix of emotions. DaNae, one of our favorite day time nurses brought the discharge papers into our Care-by-Parent room and we got pictures for the first time with she and both of the boys. She admitted Bryce (or was it Grant?); the first one to take care of him and the one who "caught" him after Dr Williams removed him from my belly. Becky was busy taking pictures of the boys on the bed as DaNae and I stood to the side and watched. I gave DaNae a hug and bawled. I cannot thank her enough for all that she did for us during the time Grant was struggling with seizures on the vent back in February. I would never have been able to make it through that week, or the weeks that followed, without her. Funny that I was so very ready to have the boys both home yet felt sad to leave the NICU and the incredible staff who work there. Becky and I bawled on eachother as Grant was loaded into the van to go home. I climbed in and looked back at the boys as we drove out of the parking lot. Again I bawled. We had BOTH boys in our van. No more late night visits to the NICU, no more dreaded calls or disheartening lab results. No more NEC scares, NG tubes or ventilators. No more alarming monitors, or screeching isolate temperature alarms.
Here we are, thirteen weeks after their birth and despite all of struggles, they are here, they are healthy and they are HOME. Home. I honestly wondered if that day would ever come. We have traded NICU visits to specialist appointments. Opthamologists and pulmonologists, pediatricians, occupational therapists, speech therapists, home-health nurses. Crazy med schedules and complicated formula concoctions. Three hour feeds and LONG nights. Yet I wouldn't trade a moment of it. God heard the many many cries for healing that were offered up for our precious boys and these tiny babies have become small miracles. I know what it feels like to ache to hear your baby cry. I know how it feels for your arms to ache to hold them. I can now hold them all day long if I wanted. I don't have to put them down and go home. They are home with me! I hear their sweet cries each day.
Bryce struggled when we first brought him home to eat and gain weight. We've upped his calorie count, added AR to his formula and propped up his bed and he is doing much better. He's even beginning to get the jowls that little brother has developed. Grant is doing good now that he is home and is eating a lot better than I expected. Its still a bit of a challenge to get him to eat during the night but he eats like a champ often during the day. They love to snuggle and love to be close to eachother. They are getting spoiled already because we don't want to put them down. But that's okay. We'll worry about that later. Right now I just want to enjoy every moment of them being home and hold them as often as they want. :D
Thank you all so very much for your prayers. Thank you for the many encouraging messages that you sent out to us to help lift us up when we were struggling to make it through the day. Who am I that God would hear our cries and b less us with such incredible miracles?
Tuesday, February 15, 2011
A Detour and A Homecoming
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!
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!
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.
Sunday, January 30, 2011
Things Revisited
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!!
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!!
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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