I am sitting in what feels like the millionth hospital room I have stayed in during the last two months. But tonight I am insanely happy. Next to me, sprawled out on the couch snoring, is Andy. In front of me, sound asleep in their bassinets, are Jacen and Spencer! We are rooming in which, in theory, is one of the last steps before taking our boys home. It's been a whirlwind of a past week!
Just over a week ago I wrote about how frustrating feedings were since the boys didn't have the hang of it yet. This past friday night our night nurse decided to try a new nipple on their bottles. The nuk orthodontic nipple made a huge difference! Spencer went from taking 10, 15, 20 mL per feeding to taking all 60 with no problems. Jacen didn't show such a huge difference but still progressed. By Sunday Andy and I asked the doctors if we could switch to an ad lib (on demand) feeding schedule since their wakeful times didn't seem to coincide with their feeding times. To our surprise they got us another nesting room and we've been here since! We did every feeding ourselves from Sunday at 2pm until today at noon. Not much sleep happening here. Jacen passed his carseat test yesterday and Spencer passed his today. The doctor is a little concerned with Spencer's weight gain since it's not as much as he would like. Today they decided it was time for us to room in. The earliest Jacen will go home is Friday and Spencer a day or two after that. I'm trying not to get my hopes up because something could still happen to keep us here longer.
But for now my boys are in front of me and they are monitor free! Cue anxiety. I keep checking to make sure they're breathing and every little grunt and sneeze is sending me to check on them. I'm hoping by the end of tonight I'll have less anxiety. I need to sleep sometime! But these two little boys are so incredibly precious and I'm so scared I won't do a good job at being their mommy. I think Andy and I might take shifts being awake and keeping an eye on them, at least for tonight.
It's been such a long journey to get here. One year and five days ago I began chronicling it at my original blog Hoping For Baby Graham. What an amazing year it has been! We have had our struggles but we have also been so incredibly blessed. I am so thankful for all that we have and can't wait to see what the next year has in store for us.
Wednesday, May 30, 2012
Monday, May 21, 2012
The home stretch
I didn't believe it when the NICU nurses and doctors said that the journey would continue to get more frustrating as time went on. They said the end is almost always the worst. We have now been at the hospital every day for 58 straight days, 48 of them spent in the NICU. Our boys are doing fantastic and we are so incredibly ready to bring them home. We know it will be tough but we can't wait. That's why this home stretch is so tough.
Jacen is up to 5lbs7oz and Spencer is 5lbs6oz. They have come a long way from their 2lb13oz and 3lb3oz little selfs! They are maintaining their temperatures perfectly, not having episodes of apnea or bradycardia, and steadily gaining weight. The one thing they're not yet doing? Finishing all their meals on their own without needing the feeding tube. It doesn't help that their feeds went from 48mL of fortified breastmilk every 3 hours last week to 56mL and 58mL of pure breastmilk this week. That's a big increase! Andy and I know they will get there, and we are so proud of all that they have accomplished, but it's tough not to be frustrated. We keep reminding ourselves that this isn't going to happen in our time. We've trusted God's perfect timing up to now we need to stop second guessing him.
Breastfeeding is so far a bust and has me frustrated as well. I weigh them before and after since 1gram supposedly equals 1mL of intake. Both boys latch really well but then tend to fall asleep. I love that they find me so comfortable and comforting but I need to figure out a way to keep them awake for their 30 minute meal time. Yesterday Jacen latched perfectly and did a really good job sucking, I was so proud! Unfortunately when I picked him up I found that the boppy was totally soaked. The little stinker had sucked in the milk and then promptly drooled most of it out. After 20 minutes of great breastfeeding he only actually ingested 2mL. I have such mixed emotions about breastfeeding right now. I desperately want to be able to do it and for it to be a success, but I also feel like it's hurting their ability to go home when they can usually take at least 1/3 of a bottle. The lactation consultant and one of the doctors keep encouraging me to continue and I think I will. I've been told if we exclusively bottle feed at this age there is a decent chance they would refuse to breastfeed once we get home.
I know that in a few weeks when the boys are home and we've established yet another new normal that this time will seem like it flew by. I'm doing my best to just live in the moment and cherish every second with our precious boys.
Jacen is up to 5lbs7oz and Spencer is 5lbs6oz. They have come a long way from their 2lb13oz and 3lb3oz little selfs! They are maintaining their temperatures perfectly, not having episodes of apnea or bradycardia, and steadily gaining weight. The one thing they're not yet doing? Finishing all their meals on their own without needing the feeding tube. It doesn't help that their feeds went from 48mL of fortified breastmilk every 3 hours last week to 56mL and 58mL of pure breastmilk this week. That's a big increase! Andy and I know they will get there, and we are so proud of all that they have accomplished, but it's tough not to be frustrated. We keep reminding ourselves that this isn't going to happen in our time. We've trusted God's perfect timing up to now we need to stop second guessing him.
Breastfeeding is so far a bust and has me frustrated as well. I weigh them before and after since 1gram supposedly equals 1mL of intake. Both boys latch really well but then tend to fall asleep. I love that they find me so comfortable and comforting but I need to figure out a way to keep them awake for their 30 minute meal time. Yesterday Jacen latched perfectly and did a really good job sucking, I was so proud! Unfortunately when I picked him up I found that the boppy was totally soaked. The little stinker had sucked in the milk and then promptly drooled most of it out. After 20 minutes of great breastfeeding he only actually ingested 2mL. I have such mixed emotions about breastfeeding right now. I desperately want to be able to do it and for it to be a success, but I also feel like it's hurting their ability to go home when they can usually take at least 1/3 of a bottle. The lactation consultant and one of the doctors keep encouraging me to continue and I think I will. I've been told if we exclusively bottle feed at this age there is a decent chance they would refuse to breastfeed once we get home.
I know that in a few weeks when the boys are home and we've established yet another new normal that this time will seem like it flew by. I'm doing my best to just live in the moment and cherish every second with our precious boys.
Thursday, May 10, 2012
Isolation and mourning
Are you ready for some more 3am deep thoughts? This will probably be even more rambling than normal due to the early hour and sleep deprivation.
I had a sad day yesterday. Most days I'm able to have a sad moment or two and then move on. Spending time with my boys is the highlight of my world and I'm so thankful they're doing as well as they are. They're both up to 4lbs10oz and slowly getting the hang of eating. I'm thankful for every day the doctors say, "no real update" or call them "boring" since that means they're doing good. But being a preemie mom is incredibly isolating.
Yesterday marked one year since my beloved Grandpa passed away. I remember telling my mom last year that next we wouldn't spend Mother's Day in the hospital. Guess what? We will be spending it in the hospital after all. It'll be a much happier occasion but it's still not what I had hoped. I know it's not what anyone hoped.
When I first went into preterm labor I went into my tough girl stubborn mode. I told friends and family that I was okay, that we didn't need anything. That was really a lie. We needed love and support and we got it. I had so many friends visit us in the hospital and so many people call, text, email, and message me on facebook. But as time has passed that obvious support has waned. I can't blame anyone but myself since I keep telling people I'm fine. Why should anyone think I'm a liar? I know people are silently supporting us.
But it's also difficult now because most times people want to know when the boys are coming home, or when they can meet them, or when we can take them out once they're home. The truth is that we don't know. We really hope our boys will be home by the end of the month but even then our challenges don't end. Our boys were born 10 and a half weeks early and that doesn't change once they're released from NICU. We won't get to be normal parents for a long time. We have been told that even a simple cold is likely to result in them returning to the hospital within their first year of life. So we won't be able to go to anything where there are large gatherings of people. That includes taking them to my work, taking them to library story times, visiting Andy's Grandma at her home, even going to the grocery store or mall will present danger. I know we are going to get called over protective, I know people don't understand. I would not have understood before. But it is what it is and the health of our boys is what is most important.
Being pregnant with the boys was isolating because I was tired all the time, I was large, and I couldn't do a lot of the things I used to do. But being a preemie mom is even more isolating. I'm dedicated to breastmilk feeding so I continue to pump every three hours around the clock. This essentially means that every three hours I need to be either at home or at the NICU where a hospital grade pump is available. I bought a regular electric pump but after trying it yesterday it's obvious the NICU's lactation consultant is right, it just doesn't have the same pumping ability. So for the sake of my supply I need to continue using the huge hospital grade pump. I have to pump at least eight times a day for 30 minutes. That adds up to four and a half hours in a day. Eight hours a day I am at the NICU working with the boys on bottle and breast feeding, and bonding with them. Between the 11pm and 11am pumpings I attempt to get a little bit of sleep. There is very little time for anything else. But I miss my friends, I miss our family. Heck, I miss spending regular time with Andy.
I even feel somewhat isolated from my babies right now since the most important thing is for them to continue to grow. A sleeping baby is a growing baby. So we really only hold them, touch them, love on them while we're working on feeding them. I know things will improve drastically once the boys are home. It will still be difficult, I know, but so much better. I can't wait until I can snuggle with them throughout the day instead of just at feeding times!
In summary, this sucks. I've been trying to avoid saying or thinking it since I was worried it would make me ungrateful for how well my boys are doing. But the NICU support group I attended on Tuesday helped me realize that this sucks and it is 100% okay to feel that way. I need to mourn the loss of a normal pregnancy and I need to learn to reach out for the support that I need. Even though the boys are doing well it still is a loss. I didn't get to have the excited family in the waiting room anxiously awaiting their arrival, I didn't get to have an intervention free birth, I didn't get to do skin to skin time or attempt to breast feed at birth (heck, I didn't get to hold Jacen for 9 days and Spencer for 10), I didn't get to happily leave the hospital with them when I was discharged. It sucks it sucks it sucks! I miss feeling them move inside me and it makes me so sad and angry that we were robbed of that time together. I have so much guilt even though I know all of this is out of my control and that God has a plan.
I hate that yet again I have issues with pregnancy. After our miscarriage and subsequent infertility I struggled with seeing a pregnant woman. I told myself that everyone has a story and I didn't know theirs. But it stung that so many women were able to get and stay pregnant. Now here I am with similar feelings again. I mourn the loss of my third trimester and all the normal annoyances associated with it. As ridiculous as it is I mourn not getting to take the glucose test. I actually cried last week when a friend mentioned taking it because I never got to. I realize the drink is nasty, but it's normal. I didn't get that.
We're finding a new normal but I think it's still okay to be sad sometimes. I'm just trying to focus of the positives 95% of the time, there really are a lot of them. I am so blessed to have two beautiful growing boys! I know that things will get better.
I had a sad day yesterday. Most days I'm able to have a sad moment or two and then move on. Spending time with my boys is the highlight of my world and I'm so thankful they're doing as well as they are. They're both up to 4lbs10oz and slowly getting the hang of eating. I'm thankful for every day the doctors say, "no real update" or call them "boring" since that means they're doing good. But being a preemie mom is incredibly isolating.
Yesterday marked one year since my beloved Grandpa passed away. I remember telling my mom last year that next we wouldn't spend Mother's Day in the hospital. Guess what? We will be spending it in the hospital after all. It'll be a much happier occasion but it's still not what I had hoped. I know it's not what anyone hoped.
When I first went into preterm labor I went into my tough girl stubborn mode. I told friends and family that I was okay, that we didn't need anything. That was really a lie. We needed love and support and we got it. I had so many friends visit us in the hospital and so many people call, text, email, and message me on facebook. But as time has passed that obvious support has waned. I can't blame anyone but myself since I keep telling people I'm fine. Why should anyone think I'm a liar? I know people are silently supporting us.
But it's also difficult now because most times people want to know when the boys are coming home, or when they can meet them, or when we can take them out once they're home. The truth is that we don't know. We really hope our boys will be home by the end of the month but even then our challenges don't end. Our boys were born 10 and a half weeks early and that doesn't change once they're released from NICU. We won't get to be normal parents for a long time. We have been told that even a simple cold is likely to result in them returning to the hospital within their first year of life. So we won't be able to go to anything where there are large gatherings of people. That includes taking them to my work, taking them to library story times, visiting Andy's Grandma at her home, even going to the grocery store or mall will present danger. I know we are going to get called over protective, I know people don't understand. I would not have understood before. But it is what it is and the health of our boys is what is most important.
Being pregnant with the boys was isolating because I was tired all the time, I was large, and I couldn't do a lot of the things I used to do. But being a preemie mom is even more isolating. I'm dedicated to breastmilk feeding so I continue to pump every three hours around the clock. This essentially means that every three hours I need to be either at home or at the NICU where a hospital grade pump is available. I bought a regular electric pump but after trying it yesterday it's obvious the NICU's lactation consultant is right, it just doesn't have the same pumping ability. So for the sake of my supply I need to continue using the huge hospital grade pump. I have to pump at least eight times a day for 30 minutes. That adds up to four and a half hours in a day. Eight hours a day I am at the NICU working with the boys on bottle and breast feeding, and bonding with them. Between the 11pm and 11am pumpings I attempt to get a little bit of sleep. There is very little time for anything else. But I miss my friends, I miss our family. Heck, I miss spending regular time with Andy.
I even feel somewhat isolated from my babies right now since the most important thing is for them to continue to grow. A sleeping baby is a growing baby. So we really only hold them, touch them, love on them while we're working on feeding them. I know things will improve drastically once the boys are home. It will still be difficult, I know, but so much better. I can't wait until I can snuggle with them throughout the day instead of just at feeding times!
In summary, this sucks. I've been trying to avoid saying or thinking it since I was worried it would make me ungrateful for how well my boys are doing. But the NICU support group I attended on Tuesday helped me realize that this sucks and it is 100% okay to feel that way. I need to mourn the loss of a normal pregnancy and I need to learn to reach out for the support that I need. Even though the boys are doing well it still is a loss. I didn't get to have the excited family in the waiting room anxiously awaiting their arrival, I didn't get to have an intervention free birth, I didn't get to do skin to skin time or attempt to breast feed at birth (heck, I didn't get to hold Jacen for 9 days and Spencer for 10), I didn't get to happily leave the hospital with them when I was discharged. It sucks it sucks it sucks! I miss feeling them move inside me and it makes me so sad and angry that we were robbed of that time together. I have so much guilt even though I know all of this is out of my control and that God has a plan.
I hate that yet again I have issues with pregnancy. After our miscarriage and subsequent infertility I struggled with seeing a pregnant woman. I told myself that everyone has a story and I didn't know theirs. But it stung that so many women were able to get and stay pregnant. Now here I am with similar feelings again. I mourn the loss of my third trimester and all the normal annoyances associated with it. As ridiculous as it is I mourn not getting to take the glucose test. I actually cried last week when a friend mentioned taking it because I never got to. I realize the drink is nasty, but it's normal. I didn't get that.
We're finding a new normal but I think it's still okay to be sad sometimes. I'm just trying to focus of the positives 95% of the time, there really are a lot of them. I am so blessed to have two beautiful growing boys! I know that things will get better.
Saturday, May 5, 2012
One month old!
Our boys are now one month old. It's still surreal that an entire month has passed since they were born. It's been an eventful month! We are so thankful both boys are doing fantastic. We couldn't ask for anything more, except that they continue to grow and get to come home soon.
As of his one month birthday Jacen is up to 4lbs2oz! He is still anemic but we're all hopeful he won't need a transfusion. He is on iron and sodium supplements. He is currently eating 38mL of fortified breast milk every 3 hours. Most of that is through his feeding tube but he is starting to suck from the bottle and breast. Hopefully in the next week or two he'll begin taking more and more of his feedings from us. Jacen is definitely our chill little cuddle buddy. He doesn't get too upset most of the time and loves skin to skin time. He was not a fan of his one month pictures though!
Spencer is up to 4lbs4oz! He does not have to take the supplements his brother does and is currently eating 40mL of fortified breast milk every 3 hours. He is taking most of his feedings through the tube but it working on bottle and breast too. Spencer is our little drama king. We joke that he has an on/off switch because he goes from happy to upset back to happy in quick progression. He has a high pitched cry that makes us laugh every time we hear it because we know he's just complaining and is fine. He's also our little cuddle buddy though since he always calms down when held by mom or dad.
We are so very blessed! We're very hopeful that the boys might be ready to come home by the end of the month. In order to do so they must be maintaining their own body temperature in an open crib (moving to one in a few days), eating all 8 meals from bottle or breast, gaining weight, not having any episodes of apnea or bradycardia, and pass their car seat tests.
We're busy getting ready for them to come home and visiting them in the NICU. Between pumping 4.5 hours a day, at least a 30 minute commute to the hospital each way, being at the hospital for about 8 hours a day, eating, sleeping, showering etc there doesn't seem to be enough time in the day! But we're managing and seem to have found our "normal" for now. I just can't wait for the boys to be able to come home. I know it's going to be challenging being 100% responsible for their care but I am so incredibly ready!
Subscribe to:
Posts (Atom)