Life at home with Jackson is so wonderful and easy. Granted, he has decided that he doesn't like to sleep at night and would instead prefer to stay up in Mommy's arms, but other than that, it's a piece of cake. We've started to finally get settled into the life of having a baby, and I think we're doing a pretty good job of it if I do say so myself.
Yesterday, Jackson went to his first ENT office visit, and the ENT talked about how impressed he is with Jackson's progress. He said that the majority of babies of he sees with vocal cord paralysis go home on feeding tubes and really struggle to feed safely. Jackson is home, before his due date, taking 8 bottles a day like a champ! He said that that was a very good sign. We'll go back to see him in two months for another check-up. :)
Today, we went to Target to pick up our pictures from last week. They look so amazing! I'm so happy with how they turned out. We also picked up some new hats for Jackson and Kohls and a new shirt for me! Because of my overactive thyroid, I've lost so much weight that I"m not thinner than I was before I had Jackson. So, none of my clothes fit! I'm trying to make due with my clothes from before, but everything seems to swallow me whole or be too big in some sections. I'm not going to lie... I feel like I look like a hobo sometimes. But, from what I understand, what new mom doesn't? :)
I'm super excited about my friend Idarah's baby shower tomorrow. Her son Kaden was Jackson's neighbor in the NICU. He was born in June at 23 weeks and 6 days. He is such a cutie and is the toughest little guy in the world. I'm in awe of his parents who keep their chin up throughout this tough journey and always keep their faith. I often looked to Idarah for inspiration while we were in the NICU with Jackson. I'm so excited to be joining her and her family to celebrate the 2nd cutest baby in the whole world tomorrow (Jackson, of course, is the cutest). :)
In other news, Jackson LOVES Baby Einstein. I let him watch one episode a day, and he seems to be mesmorized by the TV! There is a little puppet yellow jacket on the screen that makes cooing noises and Jackson loves it!! :) It is adorable to watch him watching the TV with such enjoyment, making little noises, and smiling. It's so hard to tear myself away from it to go do laundry, brush my teeth, or even just sit in the room quietly by myself for 30 seconds. :)
Life here is wonderful. I can't even begin to thank each of you diligent readers enough for your thoughts and prayers throughout this tough journey. I am so thankful to be home, and yet, my heart goes out to all of the families still in the NICU, at Childrens, or stuck in HRP. I often wish there was more I could do for all of the families still stuck in the trenches, day in and day out thinking about O2 saturation, weight gain, or trophic feeds. It still doesn't seem quite real that my baby is safe, at home, and doing so well.
With love,
Anna
Preemie Ticker
Friday, August 27, 2010
Wednesday, August 25, 2010
Being a Mom
Over the last few days, I've had a number of my really good friends going through tough situations in their personal lives. For each of these friends, I've listened, tried to be a source of encouragement, and prayed, hard, for thing to work out to their satisfaction. The toughest part of everything is that our satisfaction isn't always what is easiest or most pleasant in the short run. Sometimes, we have to endure difficult situations, deal with people we have a hard time handling, or confront our own actions and the actions of other people without knowing what the "right" thing to do is.
Becoming a mom has really showed me that the "right" thing is different for everybody and every situation. Thinking back to our "scary talk" with the neonatologist before Jackson was born reminds me exactly how important knowing what is "right" for me is different than what is "right" for someone else. The doctor explained to Ryan and I exactly what our odds were for having a healthy, no complications baby born anywhere from 24 to 34 weeks were and asked us "do you want us to do everything we can to save your son not knowing what the outcome may be?" At the time, Ryan and I knew that our answer was "Yes!" and looking at my perfect, wonderful, healthy son laying on his Daddy's chest right now, I know that we made the right decision. Despite the long, frustrating journey we endured in the hospital, I have no doubt that we made the right decision. That being said, becoming a mom has taught me that another person in that same hospital room could have, for whatever reason, made a different decision and that would have been "right" for his/her family.
The point is, I've learned that I can't be as judgmental as I once was. People make the best decision for themselves at the time they make it. We are influenced by many things. From the outside looking in, or even the inside looking in, we may not understand their decisions, we may not like the situation, but in the end, we must find a way to do what is best for ourselves, and now, for our little ones. Since welcoming Jackson into the world, I've become an adult and with this step comes certain responsibilities. Looking at his beautiful face, I know that I wouldn't trade a moment of being an adult for anything.
With love,
Anna
Becoming a mom has really showed me that the "right" thing is different for everybody and every situation. Thinking back to our "scary talk" with the neonatologist before Jackson was born reminds me exactly how important knowing what is "right" for me is different than what is "right" for someone else. The doctor explained to Ryan and I exactly what our odds were for having a healthy, no complications baby born anywhere from 24 to 34 weeks were and asked us "do you want us to do everything we can to save your son not knowing what the outcome may be?" At the time, Ryan and I knew that our answer was "Yes!" and looking at my perfect, wonderful, healthy son laying on his Daddy's chest right now, I know that we made the right decision. Despite the long, frustrating journey we endured in the hospital, I have no doubt that we made the right decision. That being said, becoming a mom has taught me that another person in that same hospital room could have, for whatever reason, made a different decision and that would have been "right" for his/her family.
The point is, I've learned that I can't be as judgmental as I once was. People make the best decision for themselves at the time they make it. We are influenced by many things. From the outside looking in, or even the inside looking in, we may not understand their decisions, we may not like the situation, but in the end, we must find a way to do what is best for ourselves, and now, for our little ones. Since welcoming Jackson into the world, I've become an adult and with this step comes certain responsibilities. Looking at his beautiful face, I know that I wouldn't trade a moment of being an adult for anything.
With love,
Anna
Monday, August 23, 2010
A Very Busy Day.... after a very sleepless night.
Last night was an extremely sleepless night for Ryan and I. I'm having a very difficult time working out an overnight schedule where I can feed and change Jackson every there hours and pump every four. Let me tell you...it isn't possible if sleep needs to be in the mix too. I think, as annoying as it is going to be, that I'm going to start pumping every three hours again. That way I will eliminate the up and down routine and can sleep without waking up in pain. ::sigh:: Ryan had a bit of a sleepless night last night because Jackson decided to not only pee and poop all over Ryan, his clothes, the changing table, and the wall, but then to refuse to go back to sleep after Ryan cleaned him up. In addition to that, Jackson's apnea monitor kept going off because of the leads kept coming off so after the third false alarm we changed the lead. The company told us to reuse the heart leads for a week straight, but obviously, that isn't going to work!
Today was a very busy day for us. We went to our first pediatrician visit (I LOVE MY PEDIATRICIAN!!). Jackson, of course, got a clean bill of health and she kept commenting on how good he looks!! :) My little man weighed in at 6 pounds 5 ounces (with his diaper on, so take away a little bit) and is now 19 1/4 inches long! :) We are going back to see her in two weeks.
This afternoon we went to Jackson's eye doctor for an eye exam. He is getting eye exams to check for Retinopathy of Prematurity (where the blood vessels in the eye don't grow correctly). Luckily, all of his eye exams have come back normal. I held Jackson for this eye exam and it was a nightmare!! He cried and cried and cried. They had to hold his eyes open with these metal clamp-like things. It was sooo hard! As soon as it was over I gave him lots of kisses and helped console him. The doctor kept saying, "He's doing a great job! Babies are usually screaming their heads off!" The problem with that statement: MY BABY CAN'T SCREAM HIS HEAD OFF BECAUSE OF THE VOCAL CORD PARALYSIS!! He cried the loudest I have ever heard before. Granted, it isn't all out full-term baby crying, but it was really loud for him. After I calmed him down, which surprisingly only took a minute or so, he laid in my arms and slept until we were ready to go. It's amazing how my kisses and hugs can calm him down so quickly. It's a really special feeling. The eye doctor wants to see him back again in two weeks, and this time is sending us home with a prescription for the eye drops to dialate his eyes at home. Today it took two hours to get his eyes ready, and we were just sitting there waiting. :(
The next few days should be very quiet and peaceful at home. We don't have to go out again until his ENT appointment on Thursday. Thank goodness for peace and quiet.
BTW: Having him home is still the most wonderful thing in the whole world. :)
With love,
Anna
Today was a very busy day for us. We went to our first pediatrician visit (I LOVE MY PEDIATRICIAN!!). Jackson, of course, got a clean bill of health and she kept commenting on how good he looks!! :) My little man weighed in at 6 pounds 5 ounces (with his diaper on, so take away a little bit) and is now 19 1/4 inches long! :) We are going back to see her in two weeks.
This afternoon we went to Jackson's eye doctor for an eye exam. He is getting eye exams to check for Retinopathy of Prematurity (where the blood vessels in the eye don't grow correctly). Luckily, all of his eye exams have come back normal. I held Jackson for this eye exam and it was a nightmare!! He cried and cried and cried. They had to hold his eyes open with these metal clamp-like things. It was sooo hard! As soon as it was over I gave him lots of kisses and helped console him. The doctor kept saying, "He's doing a great job! Babies are usually screaming their heads off!" The problem with that statement: MY BABY CAN'T SCREAM HIS HEAD OFF BECAUSE OF THE VOCAL CORD PARALYSIS!! He cried the loudest I have ever heard before. Granted, it isn't all out full-term baby crying, but it was really loud for him. After I calmed him down, which surprisingly only took a minute or so, he laid in my arms and slept until we were ready to go. It's amazing how my kisses and hugs can calm him down so quickly. It's a really special feeling. The eye doctor wants to see him back again in two weeks, and this time is sending us home with a prescription for the eye drops to dialate his eyes at home. Today it took two hours to get his eyes ready, and we were just sitting there waiting. :(
The next few days should be very quiet and peaceful at home. We don't have to go out again until his ENT appointment on Thursday. Thank goodness for peace and quiet.
BTW: Having him home is still the most wonderful thing in the whole world. :)
With love,
Anna
Sunday, August 22, 2010
Happiest Days of my Life
The past two days have been the happiest days of my life. Having Jackson home is simply incredible. Life with him, the cats, and Ryan is so easy. I asked Ryan yesterday if having a newborn home was supposed to be this easy, and he said that he didn't think so.
Jackson essentially just sleeps, eats, and poops and that's okay. Yesterday while we were making dinner I put him in his bouncer next to the TV and played some Baby Einstein for him. HE LOVED IT! He kept looking at the TV and making little noises. It was the cutest thing ever!
On Friday, we went to Target's Portrait Studio and had professional pictures taken. They are so beautiful! Here are two of my favorites:
The bottom one parallels my first baby, Kitty, who passed away over a year ago and Jackson. Kitty was always there for me during all of the infertility treatments, the losses, and during the time when we were told we'd never have children. She really became my baby. When she passed away, I her favorite blanket in half and buried her in half and kept half for me to sleep with. This picture is Jackson wrapped in my half of the blanket with Kitty's picture. Love it! :)
Speaking of cats, our cats are remarkably not interested in Jackson. Hannah, Jacob, Grace, Miss Brooks, and Mario have all looked at him, but they have decided they could care less about him. I always told people that would be the way it was but no one believed me. :)
I'm going to go wash bed linens and get ready for the day. Ryan's parents are arriving today to visit so I want to make sure my house is at least somewhat presentable. We have big plans for tonight... today is Hannah's 13th birthday so we're having a catnip party later! :)
With love,
Anna
Jackson essentially just sleeps, eats, and poops and that's okay. Yesterday while we were making dinner I put him in his bouncer next to the TV and played some Baby Einstein for him. HE LOVED IT! He kept looking at the TV and making little noises. It was the cutest thing ever!
On Friday, we went to Target's Portrait Studio and had professional pictures taken. They are so beautiful! Here are two of my favorites:
The bottom one parallels my first baby, Kitty, who passed away over a year ago and Jackson. Kitty was always there for me during all of the infertility treatments, the losses, and during the time when we were told we'd never have children. She really became my baby. When she passed away, I her favorite blanket in half and buried her in half and kept half for me to sleep with. This picture is Jackson wrapped in my half of the blanket with Kitty's picture. Love it! :)
Speaking of cats, our cats are remarkably not interested in Jackson. Hannah, Jacob, Grace, Miss Brooks, and Mario have all looked at him, but they have decided they could care less about him. I always told people that would be the way it was but no one believed me. :)
I'm going to go wash bed linens and get ready for the day. Ryan's parents are arriving today to visit so I want to make sure my house is at least somewhat presentable. We have big plans for tonight... today is Hannah's 13th birthday so we're having a catnip party later! :)
With love,
Anna
Thursday, August 19, 2010
We're Home!!
Hi everyone! I'm so happy to announce that Jackson was discharged from the hospital today, and we are now home! I don't have much time tonight to post pictures and other exciting tidbits from the day, but I just wanted to make sure to share the good news with you! I've been waiting two days to announce it to the world! Tomorrow once we've settled in I'll post all types of fun details!!
Love to all!
Anna
Love to all!
Anna
Wednesday, August 18, 2010
Holding My Breath
Hi everyone...
just wanted to let y'all know that big things are in the works for the next few days. I don't want to jinx anything, but stay tuned!!
Big News:
1. Jackson is still off the cannula.
2. Jackson is still taking all of his bottles.
3. Jackson passed his carseat test yesterday.
4. Jackson is getting his circumcision today.
With lots of love,
Anna
just wanted to let y'all know that big things are in the works for the next few days. I don't want to jinx anything, but stay tuned!!
Big News:
1. Jackson is still off the cannula.
2. Jackson is still taking all of his bottles.
3. Jackson passed his carseat test yesterday.
4. Jackson is getting his circumcision today.
With lots of love,
Anna
Tuesday, August 17, 2010
Room Air!!!
I have an endocrinologist appointment this morning, but I wanted to post a quick update for all...
JACKSON'S OFF THE CANNULA AND ON ROOM AIR!!
He is also taking all of his bottles (10 minutes each overnight!) and is doing exceptionally well. I gave him a bath yesterday, and of course, he loved the spa treatment! We could be home next week! :)
Stats:
Weight: 6 pounds 1 ounce
Respiratory: Off respiratory support, breathing on his own, doing well! No more cannula!
Feeds: 8 bottles per day, 45-50 cc each, no desats during feeds. No more feeding tube!
Goals:
1. Stay off nasal cannula.
2. Complete carseat test and pass! (It's an angle tolerance test to see if he can sit in his car seat safely without desating.
3. Get through his circumcision and continue doing well. Keep him feeling comfortable and without pain.
4. Wean off lasix.
5. COME HOME SOON!!
With love,
Anna
JACKSON'S OFF THE CANNULA AND ON ROOM AIR!!
He is also taking all of his bottles (10 minutes each overnight!) and is doing exceptionally well. I gave him a bath yesterday, and of course, he loved the spa treatment! We could be home next week! :)
Stats:
Weight: 6 pounds 1 ounce
Respiratory: Off respiratory support, breathing on his own, doing well! No more cannula!
Feeds: 8 bottles per day, 45-50 cc each, no desats during feeds. No more feeding tube!
Goals:
1. Stay off nasal cannula.
2. Complete carseat test and pass! (It's an angle tolerance test to see if he can sit in his car seat safely without desating.
3. Get through his circumcision and continue doing well. Keep him feeling comfortable and without pain.
4. Wean off lasix.
5. COME HOME SOON!!
With love,
Anna
Thursday, August 12, 2010
P = M V
Yesterday, Jackson had a wild and crazy day of reflux. He even had refluxed milk come out of his mouth once.. yuck! I felt so bad for him! They did take off his cannula in the morning, but it had to go back on around 11am due to some really bad reflux episodes. His doctor decided to put him on reflux medicine (prevacid) and when I just spoke to his night nurse, she said that the meds seemed to be working well! His doctor said she is planning to take him back off his cannula on Friday.
I hate pushing him so much so many days in a row, but I think he's getting to a point that fixing these things will finally make everything turn around for him. I hope so because I hate to see my little man uncomfortable, struggling, and in pain!
On a good note, we tried out his bouncer yesterday.... and he loved it!! I'm going to post a picture later today (my camera is in the other room). He sat in his bouncer for about 3 hours looking around at his toys, sucking on his paci, and chilling out! When the doctor came to make rounds on him today she commented on how awake and alert he was! (Awww...my little man is getting so big and grown up!)
The doctors and nutritionist decided to increase Jackson's calories again in his feeds because of the added thickener in his milk. The thickener doesn't have any calories or nutritional value, so he will require more calories because the volume is getting displaced by the thickener. (i.e. he gets 45 cc per feed. Now for every 30 cc breastmilk he gets, 5 cc is thickener. So he's losing 5 cc of nutritional value.) They are also going to add protein to the milk to help him be higher on the weight gain curve. They are also adding 2 cc thickener to his tube feedings to help his reflux.
Jackson also had a really bad stomach ache yesterday. He had terrible dirty diapers... yuck! I was worried about it because there was so much and it was so runny. PT/OT was there when I was changing a diaper and she said it was probably caused by the solution they used in the swallow study yesterday. Hopefully, it should be gone today because I don't want him to get dehydrated!
I also went back to my endocrinologist yesterday morning. He said that my blood work came back and I have "moderately severe hyperthyroidism" that wasn't postpartum hyperthyroidism. This means that I will require a medicine regime to help control it and that I have had it for awhile...which means that I had thyroid issues during the pregnancy! I spoke to Jackson's doctor and she said that it didn't hurt Jackson and this his thyroid numbers (his TSH) have all come back normal every time. There is research to suggest, however, that hyperthyroidism can negatively affect female fertility. I have another appointment next Tuesday. From the sounds of things, the next 6 months to a year will involve lots of doctors visits with lots of blood work because the medicine will constantly have to be adjusted to balance my hormones. Great... another six months to a year of visits to Atlanta.
Current Stats:
Weight: 5 pounds 14.6 ounces!
Respiratory: Oxygen Tank. Nasal Cannula. 1/64 liter. Tried him off nasal cannula in the am. Lots of desats earlier in the day due to reflux. Put back on cannula. Additional desats through the day. Started reflux meds. Few desats overnight (the meds are working!)
Feeds: 45 cc every three hours. 5 cc thickener in bottles. 2 cc thickener in tube feedings. 25 cc bottle at 11am (totally tired from stomach ache). Full bottle at 8pm in 25 minutes. Few desats at beginning of feed due to being over excited. Full bottle at 2am in 15 minutes. No desats!
Goals:
1. Keep on gaining weight! Lets hit 6 pounds!
2. See ENT (whenever he shows up) to access and treat vocal cords.
3. Keep on taking full bottles!
4. No desats!
5. Manage reflux.
6. Come home!!
With love,
Anna
I hate pushing him so much so many days in a row, but I think he's getting to a point that fixing these things will finally make everything turn around for him. I hope so because I hate to see my little man uncomfortable, struggling, and in pain!
On a good note, we tried out his bouncer yesterday.... and he loved it!! I'm going to post a picture later today (my camera is in the other room). He sat in his bouncer for about 3 hours looking around at his toys, sucking on his paci, and chilling out! When the doctor came to make rounds on him today she commented on how awake and alert he was! (Awww...my little man is getting so big and grown up!)
The doctors and nutritionist decided to increase Jackson's calories again in his feeds because of the added thickener in his milk. The thickener doesn't have any calories or nutritional value, so he will require more calories because the volume is getting displaced by the thickener. (i.e. he gets 45 cc per feed. Now for every 30 cc breastmilk he gets, 5 cc is thickener. So he's losing 5 cc of nutritional value.) They are also going to add protein to the milk to help him be higher on the weight gain curve. They are also adding 2 cc thickener to his tube feedings to help his reflux.
Jackson also had a really bad stomach ache yesterday. He had terrible dirty diapers... yuck! I was worried about it because there was so much and it was so runny. PT/OT was there when I was changing a diaper and she said it was probably caused by the solution they used in the swallow study yesterday. Hopefully, it should be gone today because I don't want him to get dehydrated!
I also went back to my endocrinologist yesterday morning. He said that my blood work came back and I have "moderately severe hyperthyroidism" that wasn't postpartum hyperthyroidism. This means that I will require a medicine regime to help control it and that I have had it for awhile...which means that I had thyroid issues during the pregnancy! I spoke to Jackson's doctor and she said that it didn't hurt Jackson and this his thyroid numbers (his TSH) have all come back normal every time. There is research to suggest, however, that hyperthyroidism can negatively affect female fertility. I have another appointment next Tuesday. From the sounds of things, the next 6 months to a year will involve lots of doctors visits with lots of blood work because the medicine will constantly have to be adjusted to balance my hormones. Great... another six months to a year of visits to Atlanta.
Current Stats:
Weight: 5 pounds 14.6 ounces!
Respiratory: Oxygen Tank. Nasal Cannula. 1/64 liter. Tried him off nasal cannula in the am. Lots of desats earlier in the day due to reflux. Put back on cannula. Additional desats through the day. Started reflux meds. Few desats overnight (the meds are working!)
Feeds: 45 cc every three hours. 5 cc thickener in bottles. 2 cc thickener in tube feedings. 25 cc bottle at 11am (totally tired from stomach ache). Full bottle at 8pm in 25 minutes. Few desats at beginning of feed due to being over excited. Full bottle at 2am in 15 minutes. No desats!
Goals:
1. Keep on gaining weight! Lets hit 6 pounds!
2. See ENT (whenever he shows up) to access and treat vocal cords.
3. Keep on taking full bottles!
4. No desats!
5. Manage reflux.
6. Come home!!
With love,
Anna
Wednesday, August 11, 2010
I'm so thankful!!
Yesterday was such a good day filled with lots of new information and an action plan I think will help Jackson feel better and progress. At 2pm today, my little man had his swallow study and it showed us some interesting new information: Jackson has been silently aspirating his food. This means that instead of going down into the stomach, some of the milk has been going into the lungs. This explains his desats during feeds, his regression back to the cannula, and his refusal to take all of his bottle or take his bottle period. This also explains why he looked so uncomfortable during his feedings and possibly why he has the stridor-like breathing. Silent aspiration is very serious and if left undetected can lead to a serious infection called aspiration pneumonia or other serious complications. Luckily, we caught it early and can treat it by thickening his milk. We were told that his milk needs to be thickened a lot (apparently the max amount that they like to thicken it at our hospital) but this should help and make him safe while eating! I'm so thankful that our wonderful PT/OT recommended to do this test and find out what was wrong! This does mean, however, that I have to stop breastfeeding because we can't thicken my milk at the source. If he weans off the thickener then some day I may be able to breastfeed again, but there are no promises. So, it looks like I'll be "visiting the bat cave" for at least the next 2-3 months. Great.
Jackson has taken two full bottles since they thickened his milk. It's the first two bottles he's taken in days, and the first two full bottles in a row since Thursday! I'm so happy!
In other Jackson news, the doctor wrote an order to take him off the nasal cannula in the morning! She also called an ENT for a consult about his crying. She was going to just put him on reflux meds to see if that would help, but Jackson began to make the crying face not long after she went to the next room, so I called her back over and she looked at him. She decided then to call for the consult and hold off on the meds until we see what the ENT says. Jackson also had an eye exam last night, and everything came back immature with no ROP! (That's what is normal at this point). That's great news!! We were told earlier that if he was going to develop any ROP it would have developed by this point, so yea!
Overall, yesteday was a very successful day because we started the ball rolling on quite a few issues and have started getting some answers! :)
I also put together his bouncer yesterday at the hospital. We're going to try it out later today!
Current Stats:
Weight: 5 pounds 14 ounces!
Respiratory: Oxygen tank. Nasal Cannula. 1/64 liter. Few desats. Off the cannula in the AM!
Feeds: 45 cc every three hours. Reduced to 2-3 PO feeds per day until we see how the thickener helps. Took a full bottle at 8pm and 2am! :)
Goals:
1. Keep on gaining weight! Six pounds here we come!
2. Get results from ENT and fix his vocal cords as directed.
3. Keep on taking bottles! :)
4. Successfully wean off nasal cannula! Few desats only!
5. Try out bouncer seat! Hopefully he'll love it!
6. Come home soon!
With love,
Anna
Jackson has taken two full bottles since they thickened his milk. It's the first two bottles he's taken in days, and the first two full bottles in a row since Thursday! I'm so happy!
In other Jackson news, the doctor wrote an order to take him off the nasal cannula in the morning! She also called an ENT for a consult about his crying. She was going to just put him on reflux meds to see if that would help, but Jackson began to make the crying face not long after she went to the next room, so I called her back over and she looked at him. She decided then to call for the consult and hold off on the meds until we see what the ENT says. Jackson also had an eye exam last night, and everything came back immature with no ROP! (That's what is normal at this point). That's great news!! We were told earlier that if he was going to develop any ROP it would have developed by this point, so yea!
Overall, yesteday was a very successful day because we started the ball rolling on quite a few issues and have started getting some answers! :)
I also put together his bouncer yesterday at the hospital. We're going to try it out later today!
Current Stats:
Weight: 5 pounds 14 ounces!
Respiratory: Oxygen tank. Nasal Cannula. 1/64 liter. Few desats. Off the cannula in the AM!
Feeds: 45 cc every three hours. Reduced to 2-3 PO feeds per day until we see how the thickener helps. Took a full bottle at 8pm and 2am! :)
Goals:
1. Keep on gaining weight! Six pounds here we come!
2. Get results from ENT and fix his vocal cords as directed.
3. Keep on taking bottles! :)
4. Successfully wean off nasal cannula! Few desats only!
5. Try out bouncer seat! Hopefully he'll love it!
6. Come home soon!
With love,
Anna
Tuesday, August 10, 2010
Momentum
After days of struggling, the doctor has finally agreed to run some extra tests on Jackson to try to find out why he's now refusing to eat. A week ago, he'd wake up hungry and down a bottle. Granted, he'd have few desats into the 70s, but no one seemed to think that was a problem. Over the weekend, Jackson stopped taking his bottles and almost outright refused to swallow. Starting two days ago, he would wake up hungry, act like he wanted the bottle, but once you got it in his mouth he wouldn't suck and swallow. As soon as you'd give up, he'd act alert again and suck like crazy on his fingers or paci. Yesterday, PT/OT came to evaluate him during the feedings. At 11am, he just looked really uncomfortable and unhappy during the feed. PT/OT recommended to the doctor to try thickening his feeds. So, at 5pm, they tried that and he did a little better (took half a bottle) but still looked uncomfortable about halfway through the feed. So, they called the doctor and convinced them to do a swallow study. Hopefully they'll do the test today, but if not tomorrow.
A swallow study is a test where they feed Jackson and then watch on x-ray how he swallows. They are looking to see if the milk is going down the wrong pipe or if there is something else wrong. It can also help determine if he needs thickening and if so, how much.
We (the nurses, Ryan, and I) also have two more concerns about Jackson. The first is that he doesn't cry. Ever. I have never once actually heard Jackson cry like a normal baby. He never cries on his own, and when I flicked his foot (to make him breathe...I'm not mean) he let out one strange sounding whimper but nothing more. Sometimes he lookes like he wants to cry, but nothing comes out. Then, he resorts to desating and grunting to show his displeasure. Early on, nurses kept telling me he'd cry when he was off the vent, he'd cry when he was older, he doesn't have anything to cry about... but now that he's 37 1/2 weeks corrected, we are beginning to get concerned that maybe there is some swelling in his vocal cords or something like that. The second thing we are concerned about is the noises he makes when he breathes. It sounds like he's gasping for breath or something like that. I've heard people use the word "stridor" but when I asked the doctor about it a week or so ago, she said that wasn't it. I don't know...but I don't think he's supposed to sound like that when he breathes.
So, overall, today is a day where we will hopefully find out some new information, make some changes for Jackson, and regain some more momentum to help him be ready to come home.
Stats:
Weight: 5 pounds 11.1 ounces
Respiratory: Oxygen tank. Nasal cannula. 1/64 liter normally. 1/32 liter during feeds. Some desat into 80s, but overall doing much better. (do we really consider him dropping to 84 or 83 a desat??)
Feeds: 4 PO feeds per day. 11am: 17cc. 5 pm: 24 cc. 11pm: 30 cc. 5am: skipped PO feed to let him rest for swallow study.
Goals:
1. Keep on gaining weight.
2. Figure out what's wrong with Jackson's feeding, breathing, and crying.
3. Get back to doing well on bottle feeding.
4. Increase good stimulation now that he's old enough to enjoy toys, a playmat, and bouncer!
5. Come home soon!
With love,
Anna
A swallow study is a test where they feed Jackson and then watch on x-ray how he swallows. They are looking to see if the milk is going down the wrong pipe or if there is something else wrong. It can also help determine if he needs thickening and if so, how much.
We (the nurses, Ryan, and I) also have two more concerns about Jackson. The first is that he doesn't cry. Ever. I have never once actually heard Jackson cry like a normal baby. He never cries on his own, and when I flicked his foot (to make him breathe...I'm not mean) he let out one strange sounding whimper but nothing more. Sometimes he lookes like he wants to cry, but nothing comes out. Then, he resorts to desating and grunting to show his displeasure. Early on, nurses kept telling me he'd cry when he was off the vent, he'd cry when he was older, he doesn't have anything to cry about... but now that he's 37 1/2 weeks corrected, we are beginning to get concerned that maybe there is some swelling in his vocal cords or something like that. The second thing we are concerned about is the noises he makes when he breathes. It sounds like he's gasping for breath or something like that. I've heard people use the word "stridor" but when I asked the doctor about it a week or so ago, she said that wasn't it. I don't know...but I don't think he's supposed to sound like that when he breathes.
So, overall, today is a day where we will hopefully find out some new information, make some changes for Jackson, and regain some more momentum to help him be ready to come home.
Stats:
Weight: 5 pounds 11.1 ounces
Respiratory: Oxygen tank. Nasal cannula. 1/64 liter normally. 1/32 liter during feeds. Some desat into 80s, but overall doing much better. (do we really consider him dropping to 84 or 83 a desat??)
Feeds: 4 PO feeds per day. 11am: 17cc. 5 pm: 24 cc. 11pm: 30 cc. 5am: skipped PO feed to let him rest for swallow study.
Goals:
1. Keep on gaining weight.
2. Figure out what's wrong with Jackson's feeding, breathing, and crying.
3. Get back to doing well on bottle feeding.
4. Increase good stimulation now that he's old enough to enjoy toys, a playmat, and bouncer!
5. Come home soon!
With love,
Anna
Monday, August 9, 2010
"What's an extra few days?"
Hi everyone. As many of you know, I'm not the best at expressing myself outwardly. I tend to just stomp my foot, repeat myself over and over, and shut down until I can make sense of uncomfortable or disheartening news. I, sadly, am in that mode today, so my blog will not be as articulate as usual.
Jackson continued to take less and less on his bottles. He outright refused his 11am. The night nurse last night discussed the need to go down on his bottles. When we arrived today, the charge nurse was at the desk and talked with us. She heard that we'd been having a rough few days (wow. These things really get out) and discussed with us the option to move to a quieter room away from the nurses station. She made some comment about Jackson being an older baby who had been in the NICU for a long time and needs lots of adult stimulation... I knew that was true, but it saddened me to hear it out loud put that way. Then, once we made it back to Jackson's room the nurse immediately said that she wanted to call the doctor and get Jackson put back on the nasal cannula to stop these desats. I was crushed! The strangest part was she asked what our opinion was... I don't want to have to give my opinion! My opinion is that he should either a) be in my uterus still or b) be at home. (Sorry, that sounds like a foot stomping thing to say)
After that, I fell apart. I am a terrible Mommy. I was so mad at Jackson for not getting it together. How awful is that? I was mad at my little 5 1/2 pound baby for not being able to breathe without assistance!! I am so embarrassed and ashamed at myself. I spent the entire morning crying. I was feeding him at the 11am, he was refusing to eat, and I just broke down and lost it. I had to give him to Ryan and leave. I went to the parent room and simply cried and cried and cried. It wasn't so much that he had to go back on the cannula, it was the realization that Jackson would not be ready to leave next week, would probably not make it home before my due date, and quite possibly, could be staying a long time past my due date. Yet again, this situation has proven to be as different as can be from the fantasy of childbirth and bring a child into our family.
As the afternoon progressed, I got better and better. I'm terribly embarrassed that I lost control like that in front of everyone and in front of Jackson. I know that our situation could be so much worse, and I'm terribly embarrassed for losing it. I feel like the worst Mommy in the whole NICU and the whole world.
I want my baby to be ready to come home. I feel such a sense of urgency that I feel isn't shared among everyone else. Many people are like "what's an extra few days? few weeks?" For me, it's an eternity. It's a few more days of sleepless nights worrying and pumping alone. It's a few more weeks of not having time to get laundry done, a clean house, and a non-PBandJ lunch. It's an eternity of not being able to walk around with my baby, introduce him to things like sunshine and the cats, and know that he's just like all of the other babies in the world. It's countless days of not knowing when he'll come home, waiting on backtracking, not having any control over much of anything, entrusting him to other people, and listening to the constant beep of the monitors. It's that many more days of dreaming of the NICU monitor beeps. I wish everyone else shared my sense of urgency to have him home.
Current Stats:
Weight: 5 pounds 11.4 ounces
Respiratory: Nasal Cannula. Oxygen Tank. 1/64 liter. Sating 99-100 percent.
Feeds: 4 PO feedings per day. 18 cc at 5am. 8 cc at 11am (refused bottle). 35 cc at 5pm (he was on nasal cannula at this point). 38 cc at 11pm. 24 calorie breastmilk. 45 cc every three hours.
Goals:
I can't even think about goals right now. My goal is to make it through tomorrow in one piece. I'll think about goals when I'm in a better place mentally and emotionally.
With love,
Anna
Jackson continued to take less and less on his bottles. He outright refused his 11am. The night nurse last night discussed the need to go down on his bottles. When we arrived today, the charge nurse was at the desk and talked with us. She heard that we'd been having a rough few days (wow. These things really get out) and discussed with us the option to move to a quieter room away from the nurses station. She made some comment about Jackson being an older baby who had been in the NICU for a long time and needs lots of adult stimulation... I knew that was true, but it saddened me to hear it out loud put that way. Then, once we made it back to Jackson's room the nurse immediately said that she wanted to call the doctor and get Jackson put back on the nasal cannula to stop these desats. I was crushed! The strangest part was she asked what our opinion was... I don't want to have to give my opinion! My opinion is that he should either a) be in my uterus still or b) be at home. (Sorry, that sounds like a foot stomping thing to say)
After that, I fell apart. I am a terrible Mommy. I was so mad at Jackson for not getting it together. How awful is that? I was mad at my little 5 1/2 pound baby for not being able to breathe without assistance!! I am so embarrassed and ashamed at myself. I spent the entire morning crying. I was feeding him at the 11am, he was refusing to eat, and I just broke down and lost it. I had to give him to Ryan and leave. I went to the parent room and simply cried and cried and cried. It wasn't so much that he had to go back on the cannula, it was the realization that Jackson would not be ready to leave next week, would probably not make it home before my due date, and quite possibly, could be staying a long time past my due date. Yet again, this situation has proven to be as different as can be from the fantasy of childbirth and bring a child into our family.
As the afternoon progressed, I got better and better. I'm terribly embarrassed that I lost control like that in front of everyone and in front of Jackson. I know that our situation could be so much worse, and I'm terribly embarrassed for losing it. I feel like the worst Mommy in the whole NICU and the whole world.
I want my baby to be ready to come home. I feel such a sense of urgency that I feel isn't shared among everyone else. Many people are like "what's an extra few days? few weeks?" For me, it's an eternity. It's a few more days of sleepless nights worrying and pumping alone. It's a few more weeks of not having time to get laundry done, a clean house, and a non-PBandJ lunch. It's an eternity of not being able to walk around with my baby, introduce him to things like sunshine and the cats, and know that he's just like all of the other babies in the world. It's countless days of not knowing when he'll come home, waiting on backtracking, not having any control over much of anything, entrusting him to other people, and listening to the constant beep of the monitors. It's that many more days of dreaming of the NICU monitor beeps. I wish everyone else shared my sense of urgency to have him home.
Current Stats:
Weight: 5 pounds 11.4 ounces
Respiratory: Nasal Cannula. Oxygen Tank. 1/64 liter. Sating 99-100 percent.
Feeds: 4 PO feedings per day. 18 cc at 5am. 8 cc at 11am (refused bottle). 35 cc at 5pm (he was on nasal cannula at this point). 38 cc at 11pm. 24 calorie breastmilk. 45 cc every three hours.
Goals:
I can't even think about goals right now. My goal is to make it through tomorrow in one piece. I'll think about goals when I'm in a better place mentally and emotionally.
With love,
Anna
Sunday, August 8, 2010
The Preemie Two-Step
Yesterday was a better day for Jackson, but he's still not back to his usual self. When we got there in the morning, he was desating very frequently. Honestly, I felt like we were back to two or three weeks ago. I was very upset and very frustrated. The nurse canceled our bath (again!) and seemed very concerned. When we fed him at 11am he took half the bottle before the nurse took it away from Ryan because he was desating too frequently. We didn't think it was anything he couldn't handle (he came right back up!) and therefore, we became very frustrated. After we positioned him better on the boppy (best baby accessory ever) he started sating 99-100 and chilled out. He fell asleep and seemed comfortable in Ryan's lap. He slept most of the afternoon, doing his periodic desats, but seemed fine. When we spoke to the doctor around 2pm, she decided to give him a dose of lasix and said we'd just watch it. She said not to be surprised if Jackson had to go back on the cannula (oh no!) and that he could just be tired and still adjusting. The afternoon went much better than the morning and he took another 1/2 bottle at 5pm. He didn't seem as interested in the bottle and just seemed tired.
Throughout the night as we talked to the night nurse she talked to us about his feeding. She believes that he is just too tired, and therefore, she is going to suggest to the doctor to decrease his PO feedings to let him rest. She said that once he starts taking full bottles again (instead of 1/2 bottle at every feeding) they could increase him more but she believes it was just too much too fast. Ryan agrees with her completely, and I see her argument. I do think that he needs time to rest, but I terribly afraid that if they reduce his PO feeds then they will be slow and hesitant to increase them again just like when we tried to go fast with the respiratory weaning process and then we went to the opposite extreme where we weaned uber slowly. In addition, the doctor had written in her progress notes that she expected him to come home between the 15-19 and now reducing his PO feeds will push that back. Thanks Jackson for doing the preemie two-step, I totally realize that you're the boss and you'll come home as late as you want. :(
In other news, I got my nose pierced yesterday. It's something I've wanted to do since high school, and I just never got around to doing it. Ryan took me yesterday afternoon, and I love it! I'll take a picture today and post it tonight!
Current Stats:
Weight: 5 pounds 10.4 ounces
Respiratory: No support. Frequent desats. Self-recovers.
Feeds: 4 PO feedings. 1/2 bottle each time. Frequent desats during feeds. Probably reducing PO frequency today.
Goals:
1. Keep on gaining weight.
2. Reduce desat frequency.
3. Build feeding endurance.
4. If PO feedings reduced, work back up to 4.
5. Get some rest.
With love,
Anna
Throughout the night as we talked to the night nurse she talked to us about his feeding. She believes that he is just too tired, and therefore, she is going to suggest to the doctor to decrease his PO feedings to let him rest. She said that once he starts taking full bottles again (instead of 1/2 bottle at every feeding) they could increase him more but she believes it was just too much too fast. Ryan agrees with her completely, and I see her argument. I do think that he needs time to rest, but I terribly afraid that if they reduce his PO feeds then they will be slow and hesitant to increase them again just like when we tried to go fast with the respiratory weaning process and then we went to the opposite extreme where we weaned uber slowly. In addition, the doctor had written in her progress notes that she expected him to come home between the 15-19 and now reducing his PO feeds will push that back. Thanks Jackson for doing the preemie two-step, I totally realize that you're the boss and you'll come home as late as you want. :(
In other news, I got my nose pierced yesterday. It's something I've wanted to do since high school, and I just never got around to doing it. Ryan took me yesterday afternoon, and I love it! I'll take a picture today and post it tonight!
Current Stats:
Weight: 5 pounds 10.4 ounces
Respiratory: No support. Frequent desats. Self-recovers.
Feeds: 4 PO feedings. 1/2 bottle each time. Frequent desats during feeds. Probably reducing PO frequency today.
Goals:
1. Keep on gaining weight.
2. Reduce desat frequency.
3. Build feeding endurance.
4. If PO feedings reduced, work back up to 4.
5. Get some rest.
With love,
Anna
Friday, August 6, 2010
The Day After
It's amazing how our not-so-great days (or even bad days) now were once considered good days a few months ago. Sadly, today was Jackson's transition day (aka the Day After a bunch of new changes). Throughout the day he was frequently desating (O2 saturation went from 94 to 86 to 78 to 84 to 89 to 91 to 96 all day long...it was like a yo-yo) and quite fussy. His doctor assured me that he was having a transition day and the multitude of changes were to blame for the desats, not his lungs. He seemed to get better throughout the day and when I spoke to his nurse tonight she said that after some position changes he has stopped the desating and gone back to his normal high O2 saturation! :)
I was able to coax him to sleep for an hour or so, but for the rest of the afternoon he was kicking his feet and grunting. I believe he was working on "presents" for us and having a difficult time. He hadn't a messy diaper since midnight (which is unusual for him) so I mentioned it to his doctor and she agreed that he needed a little help. So, after "a little help" my little man exploded! (Isn't it great how I can write about explosions on my blog with such excitement?! Six months ago I would have NEVER thought this would be my daily conversation with the world!)
His feeds today went pretty well. He took half a bottle at 5am, 11am, and 11pm, and he took a full bottle at 5pm! Right now he's just building up his endurance! :)
Tomorrow, Ryan and I will be giving Jackson a bath together. It'll be the first bath that Ryan participates in and the first bath I complete without the nurses! I told Ryan told, "We're going to have a baby in two weeks so we better get ready!" :)
Current Stats:
Weight: 5 pounds 8.9 ounces
Respiratory: No support. Yo-Yo desats all day long. Settled into his space now and is high sating.
Feeds: Full feeds, 45 cc every three hours. 4 PO (by mouth) feedings per day. Took about half a bottle (approx 23-30 cc) at 5am, 11am, and 11pm feeding. Took full bottle at 5pm feeding. No bradys during feeds. Desats to high 70s and back up during feeds.
Goals:
1. Keep on gaining weight!
2. Complete transition. Reduce desating and go back to his baseline.
3. Keep building endurance on feeds. Take all four feeds by mouth! :)
4. Come home soon!
With love,
Anna
I was able to coax him to sleep for an hour or so, but for the rest of the afternoon he was kicking his feet and grunting. I believe he was working on "presents" for us and having a difficult time. He hadn't a messy diaper since midnight (which is unusual for him) so I mentioned it to his doctor and she agreed that he needed a little help. So, after "a little help" my little man exploded! (Isn't it great how I can write about explosions on my blog with such excitement?! Six months ago I would have NEVER thought this would be my daily conversation with the world!)
His feeds today went pretty well. He took half a bottle at 5am, 11am, and 11pm, and he took a full bottle at 5pm! Right now he's just building up his endurance! :)
Tomorrow, Ryan and I will be giving Jackson a bath together. It'll be the first bath that Ryan participates in and the first bath I complete without the nurses! I told Ryan told, "We're going to have a baby in two weeks so we better get ready!" :)
Current Stats:
Weight: 5 pounds 8.9 ounces
Respiratory: No support. Yo-Yo desats all day long. Settled into his space now and is high sating.
Feeds: Full feeds, 45 cc every three hours. 4 PO (by mouth) feedings per day. Took about half a bottle (approx 23-30 cc) at 5am, 11am, and 11pm feeding. Took full bottle at 5pm feeding. No bradys during feeds. Desats to high 70s and back up during feeds.
Goals:
1. Keep on gaining weight!
2. Complete transition. Reduce desating and go back to his baseline.
3. Keep building endurance on feeds. Take all four feeds by mouth! :)
4. Come home soon!
With love,
Anna
A Big Day!!
Wow! So many things happened yesterday that my head is still spinning! Jackson took a full bottle for me at 11am. Yea! The doctor saw him at 1pm and: a) discontinued his lasix, potassium, and caffeine! b) increased his feedings to four times a day! That means 3 bottles a day, one breastfeed, and then we offer him one more bottle after breastfeeding! c) told me to bring in his carseat for his carseat test in the next few days! d) told me that she expects him to come home in the next two weeks! Oh my! and the big news...
Jackson got moved to the seventh floor!!
Okay, so let me tell you the story of how the moved occurred. Throughout the day I became more and more frustrated that he was still on the second floor. Granted, it came in waves. Sometimes I was okay with it, other times I wanted to pull my hair out! All of the wonderful nurses tried to convince me that G was a better place to be, but part of me wondered if that was to help me chill out. I've been waiting for Jackson to promote upstairs for a long time. Ryan and I have talked about it, and he made a really good point. The nurses down stairs (especially the nurses he frequently gets in G who only primarily work in G) aren't used to working with babies at this stage (off respiratory support and taking bottles). Granted, they can all give a baby a bottle, but they don't do it day in and day out like the nurses upstairs do. When I spoke to the charge nurse earlier today (I didn't seek her out, she was just nearby) she indicated that there was no plan to move Jackson. :(
At group tonight, we were discussing not being upstairs with one of the nurse managers and the other families at group. I expressed my frustration and my (somewhat) outrage that other families were getting to move upstairs, especially other families who weren't as close to discharge as we are, and yet, we aren't moving.
So, we went back to see Jackson after group, and his night nurse was starting to give him a bottle. He had breastfed at 5pm and finished taking the bottle we gave him around 6ish (don't worry, he wasn't feeding that whole time, it just took a bit for all of us to get settled). At 8pm, we went to give him another bottle. Ryan took over for the nurse, but sadly, Jackson was too tired and uncordinated to take the bottle. He had a big desat, was holding his breath, and took a bit to finally get settled in the bed and his sats back up. It was somewhat scary, but I didn't panic too much.
On the way home, Ryan and I were talking about the feeding and our desire to move upstairs. When we got home, I sat down to grab a bite to eat, and Ryan came in with his phone and said he was going to call the charge nurse and discuss Jackson's move to 7th seventh floor. I was shocked!! For those of you that know Ryan well, he isn't the type to take the initiative and call about something like that. Work related matters, he's all about it. But something as mundane and not critical as moving Jackson's upstairs, I didn't expect him to call without my bugging and nagging him, which I totally didn't do! So, he spoke to the charge nurse and she agreed to try to move him in the next few days. When I spoke to his nurse at 3am she said he was getting moved today!! Granted, she didn't sound too happy about the fact that Ryan had called, but in the long run, I'm sure that it doesn't matter. In the end, we felt Jackson should promote upstairs and be with the people that feed all the time. :)
Stats:
Weight: 5 pounds 9.1 ounces!
Respiratory: None!! One desat episode during feed tonight. No worries.
Feeding: Full feeds. 45 cc every three hours. Calories decreased to 24 (the doctor wanted to "monitor his weight gain on the calories he'll go home on"!)By mouth feeds 4 times per day. 3 only bottles. One breastfeed. One bottle offered after breastfeeding.
Goals:
1. Keep on gaining weight!
2. Take all three bottles per day!
3. Be successful with the breastfeeding / bottle feeding combo!
4. No bradys, apnea, or desats! Tolerate no caffeine and lasix!
5. Enjoy new room upstairs!
6. COME HOME SOON! :)
With love,
Anna
Jackson got moved to the seventh floor!!
Okay, so let me tell you the story of how the moved occurred. Throughout the day I became more and more frustrated that he was still on the second floor. Granted, it came in waves. Sometimes I was okay with it, other times I wanted to pull my hair out! All of the wonderful nurses tried to convince me that G was a better place to be, but part of me wondered if that was to help me chill out. I've been waiting for Jackson to promote upstairs for a long time. Ryan and I have talked about it, and he made a really good point. The nurses down stairs (especially the nurses he frequently gets in G who only primarily work in G) aren't used to working with babies at this stage (off respiratory support and taking bottles). Granted, they can all give a baby a bottle, but they don't do it day in and day out like the nurses upstairs do. When I spoke to the charge nurse earlier today (I didn't seek her out, she was just nearby) she indicated that there was no plan to move Jackson. :(
At group tonight, we were discussing not being upstairs with one of the nurse managers and the other families at group. I expressed my frustration and my (somewhat) outrage that other families were getting to move upstairs, especially other families who weren't as close to discharge as we are, and yet, we aren't moving.
So, we went back to see Jackson after group, and his night nurse was starting to give him a bottle. He had breastfed at 5pm and finished taking the bottle we gave him around 6ish (don't worry, he wasn't feeding that whole time, it just took a bit for all of us to get settled). At 8pm, we went to give him another bottle. Ryan took over for the nurse, but sadly, Jackson was too tired and uncordinated to take the bottle. He had a big desat, was holding his breath, and took a bit to finally get settled in the bed and his sats back up. It was somewhat scary, but I didn't panic too much.
On the way home, Ryan and I were talking about the feeding and our desire to move upstairs. When we got home, I sat down to grab a bite to eat, and Ryan came in with his phone and said he was going to call the charge nurse and discuss Jackson's move to 7th seventh floor. I was shocked!! For those of you that know Ryan well, he isn't the type to take the initiative and call about something like that. Work related matters, he's all about it. But something as mundane and not critical as moving Jackson's upstairs, I didn't expect him to call without my bugging and nagging him, which I totally didn't do! So, he spoke to the charge nurse and she agreed to try to move him in the next few days. When I spoke to his nurse at 3am she said he was getting moved today!! Granted, she didn't sound too happy about the fact that Ryan had called, but in the long run, I'm sure that it doesn't matter. In the end, we felt Jackson should promote upstairs and be with the people that feed all the time. :)
Stats:
Weight: 5 pounds 9.1 ounces!
Respiratory: None!! One desat episode during feed tonight. No worries.
Feeding: Full feeds. 45 cc every three hours. Calories decreased to 24 (the doctor wanted to "monitor his weight gain on the calories he'll go home on"!)By mouth feeds 4 times per day. 3 only bottles. One breastfeed. One bottle offered after breastfeeding.
Goals:
1. Keep on gaining weight!
2. Take all three bottles per day!
3. Be successful with the breastfeeding / bottle feeding combo!
4. No bradys, apnea, or desats! Tolerate no caffeine and lasix!
5. Enjoy new room upstairs!
6. COME HOME SOON! :)
With love,
Anna
Thursday, August 5, 2010
Everyday is a little more "D" news!
Last week, I never thought I'd hear the nurses and doctor mention the "D" word (discharge). I felt like we would spend the rest of our lives at Northside, especially in Pod G. For the past two days, the nurses and doctor have been discussing with me life after the NICU. His doctor has been getting all of her ducks in a row, making sure that she has everyone's contact information (my OB and perinatologist, Jackson's pediatrician). She has been going through the discharge checklist ordering final tests. Today, she discussed with me what doctor's we would see after discharge and the follow-up schedule for these doctors (eye doctor, audiologist, lung doctor, developmental specialist at Emory, etc). There is a light at the end of the tunnel and it's getting bigger and bigger each day! When I asked how much longer she (the doctor) thought he would be there, she said anywhere from two to four weeks depending on how he does taking his bottles! I suddenly began feeling the panic to get my house in order! I told Ryan that he and I would be "having a baby soon"! :)
Yesterday, Jackson had his hearing test...and he passed! It's one of the big things that has to happen before discharge. The audiologist said that both ears came back normal at all frequencies. They did a brain response test to test whether or not the physiological parts all work properly. She said that this doesn't test how he interprets the sounds, but that the sounds are physically going where they need to go properly. It's another normal test that has come back and a huge sigh of relief for us. So far, nothing has come back abnormal. He may actually make a full recovery and have no special needs (at least no major ones)!
In other news, Jackson took half his bottle yesterday morning (waking him up was a nightmare), did well breastfeeding at 5pm (tough to tell how much he took because the scale, yet again, didn't work properly), and then took a full bottle at 8pm! His nurse, Sharon, said that he seemed eager to eat at 8pm (he was rooting, smacking his lips, sticking his fingers in his mouth, etc) so instead of waiting until 11pm she went ahead and tried it to see what he'd do. This is exciting a) because he took a full bottle! and b) because he took a full bottle at a back-to-back feeding time which means he's picking up some endurance! This is a great sign for things to come!!
The only other real news I have is that we were told by someone yesterday who will remain nameless that Jackson needs to have the part of the tongue that connects the actual tongue to the bottom of the mouth clipped. She said it's a common problem in little babies, very minor, but needs to happen because it is preventing him from latching properly now and can affect speech later on. I'm going to talk about it with his doctor today, so tonight I should have more information! :)
Current Stats:
Weight: 5 pounds 8.9 ounces (a 5 1/2 pound baby!)
Respiratory: No support! One desat during his bottle this morning, but that's it!!
Feeds: Full feeds, 40 cc every three hours. Calories in breastmilk reduced to 26! Half bottle at 11am, good breastfeeding session at 5pm (scale was broken so we don't know how much), and full bottle at 8pm! That's three feedings a day and we need to complete 8 before we can go home! We're getting closer!
Goals:
1. Keep on gaining weight!
2. Take full bottles at the two feedings we're trying right now.
3. No desats or bradys!
4. Wean off caffeine and lasix (plan is to do it by Saturday!)
5. Come home ASAP! :)
With love,
Anna
Yesterday, Jackson had his hearing test...and he passed! It's one of the big things that has to happen before discharge. The audiologist said that both ears came back normal at all frequencies. They did a brain response test to test whether or not the physiological parts all work properly. She said that this doesn't test how he interprets the sounds, but that the sounds are physically going where they need to go properly. It's another normal test that has come back and a huge sigh of relief for us. So far, nothing has come back abnormal. He may actually make a full recovery and have no special needs (at least no major ones)!
In other news, Jackson took half his bottle yesterday morning (waking him up was a nightmare), did well breastfeeding at 5pm (tough to tell how much he took because the scale, yet again, didn't work properly), and then took a full bottle at 8pm! His nurse, Sharon, said that he seemed eager to eat at 8pm (he was rooting, smacking his lips, sticking his fingers in his mouth, etc) so instead of waiting until 11pm she went ahead and tried it to see what he'd do. This is exciting a) because he took a full bottle! and b) because he took a full bottle at a back-to-back feeding time which means he's picking up some endurance! This is a great sign for things to come!!
The only other real news I have is that we were told by someone yesterday who will remain nameless that Jackson needs to have the part of the tongue that connects the actual tongue to the bottom of the mouth clipped. She said it's a common problem in little babies, very minor, but needs to happen because it is preventing him from latching properly now and can affect speech later on. I'm going to talk about it with his doctor today, so tonight I should have more information! :)
Current Stats:
Weight: 5 pounds 8.9 ounces (a 5 1/2 pound baby!)
Respiratory: No support! One desat during his bottle this morning, but that's it!!
Feeds: Full feeds, 40 cc every three hours. Calories in breastmilk reduced to 26! Half bottle at 11am, good breastfeeding session at 5pm (scale was broken so we don't know how much), and full bottle at 8pm! That's three feedings a day and we need to complete 8 before we can go home! We're getting closer!
Goals:
1. Keep on gaining weight!
2. Take full bottles at the two feedings we're trying right now.
3. No desats or bradys!
4. Wean off caffeine and lasix (plan is to do it by Saturday!)
5. Come home ASAP! :)
With love,
Anna
Tuesday, August 3, 2010
The Best News Yet!
Hello everyone! I'm sorry I haven't updated the blog in two days, but to be honest, I was afraid to post because I was afraid I'd jinx us. I have some major news for everyone...
Jackson is off respiratory support!!!
In other news, he took a full bottle yesterday for Ryan, so the doctor decided to increase his feeds to two bottles and one breastfeeding per day. When Sharon (his night nurse) gave him a bottle last night, he took 25cc and had one episode during the feeding. This morning, PT/OT came to give him a bottle, but sadly due to operator error (the OT training feed him and it was VERY unsuccessful... she really just didn't know what she was doing) he only took 7 cc and had two episodes during the feed. I got really upset and said that I didn't want her feeding him anymore. I hated to be a jerkface about it, but lets be honest, a) I don't want someone who is struggling to feed my baby and b) I want to take my baby home ASAP so I only want to put our best foot forward. :) Hopefully tonight's feeding will go well. He also slept through our breastfeeding attempt at 5pm. He was just out cold and I couldn't wake him up to save my life.
Other than that, things are going well. I hope to bring him home in the next 3-4 weeks! :)
I got to give him a bath today for the first time. Well really, the nurse bathed him but I helped and watched. Next time I'll be able to do it by myself! :)
In other news, we celebrated Mario's fourth birthday on Friday! He's a big boy now!!
Speaking of big boys, Jackson now sucks on his thumb and is wearing newborn clothes! He's outgrown most of his preemie clothes! Isn't it adorable??
Lastly, I've been working in the nursery and I just put up some wall stickers! Also, look at the great paint job Ryan's dad did and the beautiful border that Ryan and his mom put up!
Current Stats:
Weight: 5 pounds 7 ounces!
Respiratory: NO SUPPORT!! Two heartrate/desat episodes during 11am feeding. Few desats!
Feeds: 2 bottles / 1 breastfeed per day. Increased feeds to 40 cc every 3 hours. Took 25 cc at 11pm feeding (yesterday) and 7 cc at 11am feeding today. Took 0 cc at 5pm breatfeeding.
Goals:
1. Keep on gaining weight!
2. Work on bottle feeding...take at least half a bottle at every bottle feeding.
3. Wake up for breastfeeding! :)
4. Reduce episodes during feedings.
5. Come home! :)
With love,
Anna
Jackson is off respiratory support!!!
In other news, he took a full bottle yesterday for Ryan, so the doctor decided to increase his feeds to two bottles and one breastfeeding per day. When Sharon (his night nurse) gave him a bottle last night, he took 25cc and had one episode during the feeding. This morning, PT/OT came to give him a bottle, but sadly due to operator error (the OT training feed him and it was VERY unsuccessful... she really just didn't know what she was doing) he only took 7 cc and had two episodes during the feed. I got really upset and said that I didn't want her feeding him anymore. I hated to be a jerkface about it, but lets be honest, a) I don't want someone who is struggling to feed my baby and b) I want to take my baby home ASAP so I only want to put our best foot forward. :) Hopefully tonight's feeding will go well. He also slept through our breastfeeding attempt at 5pm. He was just out cold and I couldn't wake him up to save my life.
Other than that, things are going well. I hope to bring him home in the next 3-4 weeks! :)
I got to give him a bath today for the first time. Well really, the nurse bathed him but I helped and watched. Next time I'll be able to do it by myself! :)
In other news, we celebrated Mario's fourth birthday on Friday! He's a big boy now!!
Speaking of big boys, Jackson now sucks on his thumb and is wearing newborn clothes! He's outgrown most of his preemie clothes! Isn't it adorable??
Lastly, I've been working in the nursery and I just put up some wall stickers! Also, look at the great paint job Ryan's dad did and the beautiful border that Ryan and his mom put up!
Current Stats:
Weight: 5 pounds 7 ounces!
Respiratory: NO SUPPORT!! Two heartrate/desat episodes during 11am feeding. Few desats!
Feeds: 2 bottles / 1 breastfeed per day. Increased feeds to 40 cc every 3 hours. Took 25 cc at 11pm feeding (yesterday) and 7 cc at 11am feeding today. Took 0 cc at 5pm breatfeeding.
Goals:
1. Keep on gaining weight!
2. Work on bottle feeding...take at least half a bottle at every bottle feeding.
3. Wake up for breastfeeding! :)
4. Reduce episodes during feedings.
5. Come home! :)
With love,
Anna
Sunday, August 1, 2010
Mixed Feelings
The longer Jackson is in the NICU, the further along his corrected ago becomes (he's 36 weeks and 2 days), and the bigger he becomes, the more anxious and upset I become. At this point, i can't help but think to myself, 'If I was just able to stay pregnant this long, I could have had Jackson and both of us be discharged from the hospital on the same day or close to it.' I realize that that is an outrageous statement because I didn't choose to have Jackson so early, but it is in my head none-the-less.
I'm just becoming so antsy to have him home. Now that he is so close, I just feel like I'm having one breakdown after the next. Granted, this could be my already out-of-whack hormones. The doctor's warned me I could become a complete nutcase because of the excess hormones in my body (thank goodness I'm seeing the endocrinologist on Thursday) but it doesn't lesson what I am feeling now.
I'm sorry. I don't think I'm articulating my feelings very well. Maybe this anxiety and frustration isn't something I can explain in words. I wish all of you could know what my heart is feeling, but then again, I'm very thankful that none of you have to know what my heart is feeling.
Today was a pretty good day for Jackson. He only had one very minor episode where he barely dropped his heartrate (to 100) and his O2 saturation (to the 60s). He took his full bottle (39 cc when he only required 37) and transferred 16 cc when we breastfed. The only change the doctor made today was to reduce the number of calories they are adding to my breastmilk from 30 to 28 (normal breastmilk has 20).
I'm hoping today will be another good day for him. He has ougrown most of his preemies clothes so I brought down his newborn ones today!! Expect lots of great pictures in new cute outfits! :)
Current Stats:
Weight: 5 pounds 2.9 ounces (lost a little due to lasix)
Respiratory: Oxygen Tank. 1/64 liter. One minor episode post feeding. Very few desats. Mainly 95-100 percent O2 saturation.
Feeding: Full feeds (37 cc every three hours). Completed one full bottle and transferred 16 cc breastfeeding.
Goals:
1. Keep on gaining weight!
2. Take another full bottle so we can increase his daily bottles from 1 to 2.
3. Continue transferring large amount while breastfeeding.
4. Wean off respiratory support.
5. Come home soon.
With love,
Anna
I'm just becoming so antsy to have him home. Now that he is so close, I just feel like I'm having one breakdown after the next. Granted, this could be my already out-of-whack hormones. The doctor's warned me I could become a complete nutcase because of the excess hormones in my body (thank goodness I'm seeing the endocrinologist on Thursday) but it doesn't lesson what I am feeling now.
I'm sorry. I don't think I'm articulating my feelings very well. Maybe this anxiety and frustration isn't something I can explain in words. I wish all of you could know what my heart is feeling, but then again, I'm very thankful that none of you have to know what my heart is feeling.
Today was a pretty good day for Jackson. He only had one very minor episode where he barely dropped his heartrate (to 100) and his O2 saturation (to the 60s). He took his full bottle (39 cc when he only required 37) and transferred 16 cc when we breastfed. The only change the doctor made today was to reduce the number of calories they are adding to my breastmilk from 30 to 28 (normal breastmilk has 20).
I'm hoping today will be another good day for him. He has ougrown most of his preemies clothes so I brought down his newborn ones today!! Expect lots of great pictures in new cute outfits! :)
Current Stats:
Weight: 5 pounds 2.9 ounces (lost a little due to lasix)
Respiratory: Oxygen Tank. 1/64 liter. One minor episode post feeding. Very few desats. Mainly 95-100 percent O2 saturation.
Feeding: Full feeds (37 cc every three hours). Completed one full bottle and transferred 16 cc breastfeeding.
Goals:
1. Keep on gaining weight!
2. Take another full bottle so we can increase his daily bottles from 1 to 2.
3. Continue transferring large amount while breastfeeding.
4. Wean off respiratory support.
5. Come home soon.
With love,
Anna
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