Trevyn and Daxton's Extraordinary Adventure
Wednesday, January 8, 2014
Kicking off 2014!
Wow. Apparently people still read my posts from the little adventure we went on with my boys. Just in December 2013, 26 people viewed this blog. I'm assuming that many are parent's with preemies looking for some answers or comfort perhaps.
I think it's time for an update on my little family and my little miracles!
Athan is 4.5 years and Dax and Trev are 2.5 years.
Athan is probably the sweetest little boy I have ever met. Occasionally we do get little outbursts of attitude from him which are borderline entertaining given that they are so far from his typical demeanor. Matt and I never believed in putting our kids in boxes, gender or otherwise. Over the last year he has done ballet, soccer, swim and gymnastics. He wasn't quite graceful enough for ballet but he loved it (or was it all the little girls that had crushes on him that he loved?). We stopped once we moved away from Seattle but we are hoping to get him started again soon. He's getting better at swimming and we are continuing this especially since a property we are working on has a stream and pond on it. He loved Soccer and this soccer mama was so proud of her little man following in my footsteps. I haven't found soccer for his age group in Olympia but I think he is old enough next year and I can't wait! He started preschool this year, too! I can't believe how much time flies! I look back and remember the moments I started feeling nauseous while working at Enterprise and can't believe that was 5 years ago! He's going to be a big Kindergartner soon!
Athan is also the sweetest big brother. He frequently tries to teach his brothers things and loves to try and be daddy and tell his brothers that they should eat their dinner so they can have dessert. He also tries to convince them to use to their manners and gives them a bed time kiss every night. If for some reason he misses their bed time kiss, he gets very upset and won't calm until he can go in and give them kisses.
Daxton, Daxton, Daxton... Where to start... He is a full on drama queen, 2 going on 40, knows what he wants and how and when he wants it and won't accept anything else. He is a blanket baby and can't sleep without one. We intentionally switched blankies as he grew up so he didn't get attached to just one. While we thought this would make his blankie addiction easier, it's caused a whole new problem. Now, he's not addicted to one blankie, he wants a different, but very specific, blankie every night. And Heaven forbid we get it wrong or worse, give the blankie he wants to Trevyn! He loves to entertain people and his smile lights a room. Sometimes I look at him and can't believe how close we came to losing him on too many occasions. We started him in swimming this year and he HATED it. He and Trev were the only kids in the class that refused to leave the steps and would scream uncontrollably if we tried to convince them to. I'm happy to say that we've moved past this and they are becoming more comfortable in the water.
So far Dax has shown no long term effects from prematurity though Matt and I have some concerns that he may be on the Autism spectrum because of the way he handles situations that stress him out or that he just doesn't like. His spine development is going well and we have seen no curvature so far! However, he does have a new diagnosis of Pectus Caranatum (pectus.org). It likely won't cause any serious health problems but it can be dramatic for his physical appearance. We will likely need to have him in a brace during his preteen years. Sucks because kids can be cruel but I believe that Athan and Trev will tackle anyone who tries to pick on Dax. Though, I'm honestly not sure that Dax will need protection. He's kind of a fireball!
Trevyn is the master of disguise! I think he is simultaneously the most evil and the cutest child. He has mastered the pouty lip (or as we call it, the booboo lip). The booboo lip has never gotten me in the past and even with him I am still able to see right through it. But, it is so darn cute I find myself wanting to get it out of him just so it warms my heart. He doesn't talk much still but his sweet demeanor is all the presence he needs in order to fall in love with him. We have him in speech therapy and it is helping a bit though it’s a slow process. We have another audiology appointment coming up in a few months to confirm that his speech delays aren’t due to a hearing problem. It’s difficult because he gets so on edge and panicked anytime we set foot in a Dr. office that we can’t even get headphones on him to check his hearing thoroughly…
Same ol’ story with his hypertension. We are getting another renal ultrasound soon and I am hoping that it shows that the kidney is almost gone. Our new nephrologist said that she would recommend keeping him on the Enalipril indefinitely to control the blood pressure as opposed to doing the minor surgery to cut off the blood flow to the bad kidney. This is opposite what our nephrologist at UC Davis told us so now we need to start figuring out what we think is best…. I hate the idea of keeping him on BP meds forever… ugh…
As for Matt and I, we are slowly but surely pulling ourselves out of the rut that losing Nature’s Nexus got us into. It was definitely a difficult, albeit not unexpected, blow. I’m slowly building my business consulting and financial management firm and I am starting classes again to move forward towards getting my CPA license. Matt is looking at getting back into the work force again as well after taking a few years to raise the 3 little monsters. Honestly, we are in one of the most difficult times of our lives professionally and financially, but our kids are finally mostly healthy, we are beyond happy in our marriage and life together and despite the fact that we are broke and just lost one of our cars, we couldn’t be happier in so many ways. I suppose that’s a positive result of dealing with all the hardship the past 3 years has brought. We are really able to put things in perspective and I am grateful for that.
Tuesday, May 8, 2012
Marshall Family Update
I can hardly believe that it has been over 10 months already since the boys were born and over 7 months since they came home!! I figured it's time for an update!
Dax- is a DIVA!!! He is crawling EVERYWHERE and this little man knows what he wants and he knows how to get it from mommy and daddy and even big brother Athan! He has developed this shrill cry that he knows we have a hard time with and he pushes it to a higher pitch the more frustrated he becomes. Think offspring of a Howler monkey and a vulcher and that is about how it sounds. He just started, at Grandma Millett's insistence, trying to say Dada. He has gotten "da" but no repetition yet. He'll be talking our ear off before we know it and telling stories about flying pigs that are blue that he saw at grandma and Pa Marshalls house after they fed him blue mushrooms that tasted like peanut butter and jelly (this is an actual story that Athan claims happened...)
We have an appointment with Shriners hospital tomorrow to get his spine x-rayed to make sure it is growing straight. This will be an ongoing thing until he stops growing (18yrs??). X-rays and specialists and some yummy raw food in Sacramento are in store! He also recently saw a pediatric urologist and there is a chance he may have a hernia and possibly a dual hernia. blargh... basically all babies in utero have hernias and generally normal births close up. Given that Dax's birth was far from normal, his didn't close up properly. We are waiting to see if there is fluid trapped (which will eventually be reabsorbed by his body) or if it is a full fledged hernia...
Trevyn - is the easiest little sweet heart ever! He smiles with little to no convincing and he is happy just exploring the toys and textures around him. Give him a full belly and a clean diaper and he is good to go! He is starting to get the idea of crawling but hasn't quite figured out the coordination yet. I give him a week before we lose him in the house somewhere. kidding! I hope... : /
Trevyn's blood pressure is still elevated and we still have him on meds. At this point we still have no idea why it is high and are just keeping our fingers crossed that he outgrows it. We have ruled out all the things that are easy to rule out with simple scans and exams. Further searching for an answer can become more dangerous to his health than just waiting it out, controlling it with meds and hoping it resolves... I am hoping it is a thing of the past before 6 months from now!!!
Athan - Is such a wonderful big brother. He tells them he loves them all the time, lets us know when they need milk, dances with them and gives plenty of hugs and kisses. Dax and Trev really look up to him and he can make them laugh like Matt and I can't! His knee is quickly becoming a thing of the past. He had a few bad behavioral days a few weeks back but otherwise he is a very well behaved child (please, someone tell me if I am delusional??) He loves to go to airports and parks and was born to swim! We are considering gymnastics for him as well. He is completely mostly potty trained during the day time. He occasionally has accidents and justifies it by saying "I just go a little bit pee pee, Mama!"
Moomy and Daddy - We're still alive!!! I look forward to the day when we both get a full nights sleep and can kick each other in bed for snoring again! Oh, the simple things...
Friday, December 16, 2011
Next to Normal
Amid all the craziness of life it gets very difficult to keep up with all of this and everyone.
My little (er, big....) family feels like a normal(ish..) family finally! I feel like the NICU days are a thing of the past and I have an amazing and loving toddler and 2 wonderful baby boys. I am happy to say that Dacember holds not a single Dr's appointment for the twins! While this sounds like such a simple accomplishment, it felt damn near impossible only 3 months ago when the boys first came home. Yes, I said 3 months ago! Tomorrow is the 3 month anniversary of the day we finished our NICU stay and brought Trev home!!!
Typically with a baby, every new accomplishment is filled with joy and excitement as parents get to watch their little one grow and learn about the world. Babies who are born prematurely and thrive in the NICU and are discharged are not in the clear with their health. They are at a greatly increased risk of having numerous disorders. Every little normal accomplishment (smiling, eating, rolling over, sucking thumb, kicking both legs) is now so much more than a milestone where I get to watch my boys grow. I watch them accomplish new things and I feel like I am watching them overcome the odds. It's a wonderful thing to see positive progression of their development! And both boys so far seem to be right on point with their growth!
Dax loves to beam his smile across the room and cannot get enough of people smiling back at him. Well, until he's had enough. Then he will let you know! When Athan got tired as a baby, he simply stopped playing and went to sleep. When Dax gets tired, it's everyone's problem until he falls asleep! However, he doesn't want you to feed him, burp him, cuddle him, wrap him, talk to him, hold him or put him down until he is asleep. He LOVES his swing. When he gets his screaming/I'm tired moods, sometimes the only thing he likes is the swing. We can hold him and make the exact same motion while swinging us in his arms but it is simply not the same in his eyes. I think it is just too much stimulation for him perhaps.
Trev finds so much satisfaction in sticking his tongue out at people. It seems every night, after I get home from work, the first thing he does is stick his tongue out and then smile at me. I predict he will be the shy one of my children as he is very specific as to when he chooses to talk to us and when he just wants to look. When Trev was born, he appeared to have a receding hairline and very thin hair. I assumed he got my side of the families hair traits. Then, one day, I woke up and it seemed that hair had sprouted overnight. Suddenly, I saw a little baby Matt head. It's so cute!
We have good control of Trev;s blood pressure now with medicine still. Our last visit to his nephrologist went well. While his BP is still elevated, a healthy blood pressure increases as you grow. Since he has done so much growing and his BP hasn't been increasing, it is technically getting better. We checked it today and he was at 101/49. Much better than in the past.
We went to Shriner's Hospital for Children in Sacramento last month to speak with a specialist about Dax's spine. All I can say is WOW. Shriner's is an amazing resource with amazing people! I have never had such a wonderful experience at a medical facility before. We arrived and checked in and someone escorted us to the lobby, which is gorgeous. Then we saw a resident Dr. first and shortly after, the attending Dr. She ordered a new round of X-rays and we were escorted to the X-ray department. We waited, maybe, 3 minutes in the waiting room for X-rays and then went back to the Dr who had the X-rays already. All in all, we spoke to a specialist, got X-rays and followed up on them within maybe 2 hours. Can you imagine that at any other hospital?? Nope! And it's completely free!!
Anyhow, I expected to see the specialist and get an idea of when she planned to perform surgery to fix his spine. Instead, she tells us that many children with spinal abnormalities grow with a perfectly straight spine and that his is currently not showing any curvature. The plan is to continue X-rays every 6 months as he grows and watch for signs of curvature. If it happens, we plan treatment then. He may never need surgery! Time will tell!
I have so much to be grateful for this holiday season! I hope you all have a wonderful Christmas and a Happy New Year!!
My little (er, big....) family feels like a normal(ish..) family finally! I feel like the NICU days are a thing of the past and I have an amazing and loving toddler and 2 wonderful baby boys. I am happy to say that Dacember holds not a single Dr's appointment for the twins! While this sounds like such a simple accomplishment, it felt damn near impossible only 3 months ago when the boys first came home. Yes, I said 3 months ago! Tomorrow is the 3 month anniversary of the day we finished our NICU stay and brought Trev home!!!
Typically with a baby, every new accomplishment is filled with joy and excitement as parents get to watch their little one grow and learn about the world. Babies who are born prematurely and thrive in the NICU and are discharged are not in the clear with their health. They are at a greatly increased risk of having numerous disorders. Every little normal accomplishment (smiling, eating, rolling over, sucking thumb, kicking both legs) is now so much more than a milestone where I get to watch my boys grow. I watch them accomplish new things and I feel like I am watching them overcome the odds. It's a wonderful thing to see positive progression of their development! And both boys so far seem to be right on point with their growth!
Dax loves to beam his smile across the room and cannot get enough of people smiling back at him. Well, until he's had enough. Then he will let you know! When Athan got tired as a baby, he simply stopped playing and went to sleep. When Dax gets tired, it's everyone's problem until he falls asleep! However, he doesn't want you to feed him, burp him, cuddle him, wrap him, talk to him, hold him or put him down until he is asleep. He LOVES his swing. When he gets his screaming/I'm tired moods, sometimes the only thing he likes is the swing. We can hold him and make the exact same motion while swinging us in his arms but it is simply not the same in his eyes. I think it is just too much stimulation for him perhaps.
Trev finds so much satisfaction in sticking his tongue out at people. It seems every night, after I get home from work, the first thing he does is stick his tongue out and then smile at me. I predict he will be the shy one of my children as he is very specific as to when he chooses to talk to us and when he just wants to look. When Trev was born, he appeared to have a receding hairline and very thin hair. I assumed he got my side of the families hair traits. Then, one day, I woke up and it seemed that hair had sprouted overnight. Suddenly, I saw a little baby Matt head. It's so cute!
We have good control of Trev;s blood pressure now with medicine still. Our last visit to his nephrologist went well. While his BP is still elevated, a healthy blood pressure increases as you grow. Since he has done so much growing and his BP hasn't been increasing, it is technically getting better. We checked it today and he was at 101/49. Much better than in the past.
We went to Shriner's Hospital for Children in Sacramento last month to speak with a specialist about Dax's spine. All I can say is WOW. Shriner's is an amazing resource with amazing people! I have never had such a wonderful experience at a medical facility before. We arrived and checked in and someone escorted us to the lobby, which is gorgeous. Then we saw a resident Dr. first and shortly after, the attending Dr. She ordered a new round of X-rays and we were escorted to the X-ray department. We waited, maybe, 3 minutes in the waiting room for X-rays and then went back to the Dr who had the X-rays already. All in all, we spoke to a specialist, got X-rays and followed up on them within maybe 2 hours. Can you imagine that at any other hospital?? Nope! And it's completely free!!
Anyhow, I expected to see the specialist and get an idea of when she planned to perform surgery to fix his spine. Instead, she tells us that many children with spinal abnormalities grow with a perfectly straight spine and that his is currently not showing any curvature. The plan is to continue X-rays every 6 months as he grows and watch for signs of curvature. If it happens, we plan treatment then. He may never need surgery! Time will tell!
I have so much to be grateful for this holiday season! I hope you all have a wonderful Christmas and a Happy New Year!!
Friday, October 28, 2011
Updates All Around!
Every night I feel like I am in a competition. With who, I'm not sure. My three boys perhaps... Most nights end in my victory and occasionally I lose. But, when I lose it usually means that at least one of my boys loses too... so perhaps I am not in competition with them? A competition with gas, maybe? Hunger pains? Tonight, I seem to be winning as all 3 of my boys are.... hmmm.... make that two of my boys are sleeping and Trev is in his swing grunting at me when he should be sleeping. We're gonna wait and see how that one ends. Perhaps he will work it out on his own. A mommy can hope, right?
As time goes on, our lives are taking shape more and more. Here is a little taste of where we all are in life right now.
I am attempting to balance work life with home life, though the scales definitely seem to tip towards home life. I am so greteful to work with close friends who would give me the world if they could! Because of them I am able to tip the balance to my home life more than I would be able to at most other jobs. I am involved in opening a restaurant in Redding right now. I like to consider myself master taste tester! I am not the culinary genious of the group but I have gained a good appreciating for good food. And I do have one signature dish of my own on the menu! It involves goat cheese and that is all the info you get! If you want to know more, you must come! We are a few weeks out from being open and I expect to see all of you there!
Matt is not working currently and he spends his days mostly in our living room keeping the 3 boys entertained, clean, fed and happy. A very exhausting job to say the least! He is considering working a little bit part time during the holiday season. We'll see if that works out.
Athan is stepping into his role of big brother as well as I could have hoped! Though he did throw a ball at Dax earlier. That was a fun conversation explaining to him that his brother can't catch a ball yet. Athan brings them blakets, holds their bottle for them and gives lots of kisses. It is amazing to see how sweet that boy is!
His knee is looking great after having his surgery over 2 months ago. He has a very nice pronounced 2" scar vertically right over his kneecap. We've explained to him that one day it will help him get attention from the ladies! The Dr. said it looks great and he doesn't expect the hemangioma to recur so we are done with that chapter of his life and we just need to keep an eye on it to make sure we don't see signs of it returning.
He is beginning to speak so well! Every day I am amazed by his vocabulary.
------ And that is where the boys decided I would stop writing the other night. Now to pick up where I left off. Athan's vocabulary...--------------------------------------------------
It's amazing to see his little mind at work learning new things constantly. He has gotten to the point where we no longer need to teach him words. HE simply absorbs them from conversations. Speaking of conversations, he has very clear conversations with us now. Matt told me today he walked by my empty mug that still had a tea bag in it and said, "Uh oh, Mommy didn't eat it all!" Cute. though apparently he doesn't quite understand tea yet!
Daxton is growing and developing very well. He is well over 8 lbs now and has grown out of newborn size diapers already! He really likes to talk to us and is starting to give us smiles often. He is a very easygoing baby and quite content just sitting on his own after he eats so that Trev can eat too. Tonight was the first night I have had him demand that I hold him while he falls asleep. We have his first Shriners appt on Nov 14th which I can't wait to get more information as to what his treatment will be. I just want to know what my baby is in store for. He has his 3rd (and hopefully last) eye exam since his discharge on NOV 1st to make sure that his retina has developed properly. With all the O2 he was given early on I was concerned about ROP but his last few eye exams have been getting better and better and he just had one spot left in his left eye where the blood vesselsdevelopd in a way that is referred to as popcorn. We expect this to be all resolved when we go in on Tuesday.
Trevyn is growing and developing well also. He knows what he wants and is not afraid to tell us. Poor baby has a lot of gas pains and was a bit colicky when we first got him home though this seems to be gone now. We get a lot of sweet "sleep smiles" from him which are quite precious. I'm pretty sure he was working on sticking his tongue out with Jeanette tonight!
We are currently going to the pediatric unit at the hospital twice a week to check his BP as it was elevated again shortly after he was discharged. His pediatric nephrologist wants his diastolic BP to get below 100 and it has been around 115+. On his last visit Trev was being fussy which makes it hard to get a good BP read. We decided to take a break after getting really high readings so he could calm down a bit. We walked up to the NICU to say hi to the nurses. While we were up there I mentioned what was going on with his BPs and the nurses measured Trev's arm for me and determined that they were using the wrong size cuff to take his BPs! They gave me the right size and we proceeded down to the peds unit to try again. This time we got 2 high BPs and 2 normal ones. I didn't want to torture his poor little arm any more so we decided to leave it at that. I plan to take him in again tomorrow and hopefully we will get some normal pressures!
We also have an appointments with a pediatric cardiologist in mid november for a small valve between Trev's atria of the heart that never closed, called ASD. We will see how that goes but the Neonatologist seemed optimistic about it.
I want to add more picures to my blogs but I am finding it to be a very time consuming pain in the butt. Whenever I load one it automatically loads on the top of the page and I have to drag it through the entire blog to get it in the right place. Anyone know of anyway to get it to load in a specific location?
Thursday, October 13, 2011
4 Men and a Mommy!
Well, the last month has been a whirlwind to say the least! We have been acting like a "normal" family of 5 over the past month, simply with a few extra Dr. appointments.
If I could pick 5 words to describe this experience so far they would be:
Exhilarating
Exhausting
Amazing
Difficult
Joyous!
How do we do it??? I don't know!!! Here is my typical day!
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11am - I wake up around and immediately pump (moo!) and take a shower. I do so immediately because I know the moment I emerge from my room I will be sucked into a wonderful vortex of cuddling with Trev, feeding Dax and listening to Athan tell me all about his airplanes and Choo Choo trains as well as what he had done throughout the morning so far. I love this part of my morning, thus I do the necessary things before embarking on this daily journey, therefore allowing proper enjoyment of such events.
11:45am - I am now ready to tackle what needs to be done for the day. So, I emerge from my room and partake in the aforementioned activities.
12:15PM - Now is the time I begin to think about the things I need to do for the day. Grocery shopping, Dr. appts, blood pressure checks, Early Intervention appts, manage medical bills, go to work... yadda yadda yadda!
12:30pm - 5:30pm - Time to actually get those things done. This is the time of day where I get to escape the madness of my living room. Don't get me wrong, I love spending as much time as possible with my boys, but I need some me time and some girl time!!! (enter Jeanette!)
5:30pm - I come home defeated only having gotten 1/3rd of the things done that I had planned on completing. ((In high school I never understood adults when they said that there are not enough hours in the day... Now.... I GET IT!))
6PM - Either Matt or I figure out and prepare dinner while the other juggles babies, dirty diapers, lego trains, computer mouses, juice bottles... you name it...
7pm-7:30pm - If we are lucky Matt and I get to eat dinner around this time. Of course it is almost always cold but by this time, I couldn't care if it was frozen, I'm starving! And we don't dare take the extra time to pop it in the microwave for a few minutes. Moments with free hands to eat a meal around our house are fleeting and if you don't sieze the moment, it may pass you by and leave you with an empty stomach!
8pm: Bath time! Athan is pretty easy and enjoys his baths a lot! One of us simply polices to bathroom to make sure there are no shenanigans going on (ei, the water is staying in the tub). The boys get bath time in the sink in the bathroom. They LOVE their baths! In turn, I love their baths as well! They get so irritated with me when I am getting them out of their outfits that by the time I get them to the water they are screaming at me. Then, as I put them in the warm water they immediately calm down and just look around and stare at me with their big beautiful eyes!
Sometime between 9pm-midnight - Athan's bedtime. He has taken on the desire to sleep either in our bed or on the couch so he can be with mommy and his brothers. We tried letting him sleep in the bed once. After numerous bruises, poor sleep and waking up to a toddler who feel of the side and was stuck between the crib and bed led us to the determination that the bed was not our best option... Now the couch is fun because Athan falls asleep while Mommy takes care of his brothers and then when he is good and zonked, mommy takes him to bed and he never knows the difference. PS: carrying 30lbs of dead weight toddler at midnight is no easy task!
10pm - Matt heads to bed to get some sleep before I wake him up before 5am. I'm on my own and ready for the challenge!
10pm-2am - I feed and try to train the boys that it is sleep time all while pumping (moo!) and trying to clean up the craziness from the day.
2am- I usually have both boys asleep and I join them!
4am-5am - Boys wake up and I wake Matt up and then I pass out!
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Heh, I explained in the beginning of this post that this was my "typical" day. As I laid it out I realize that I do not have a "typical" day! But, that is a good example!
So, as you can see by my daily schedule, I don't have much time with free hands. Thus, the lack in blogging. I really want to keep all the details straight and everyone updated so I am hoping to get another blog together within the next 2 days that is more of an update on the boys and how they are growing. Hold me to it!
Tuesday, September 20, 2011
Numbers
A look at the past few months in numbers...
28: The day in June that Dax and Trev were born.
2: The number of minutes their birth was apart.
2#: Trev's weight at birth
1#, 15.5oz: Dax's weight at birth
48: Number of days they slept in seperate beds in the NICU.
74: Number of Days Dax spent in the NICU
82: Number of Days Trev spent in the NICU
1: Number of times Trev was intubated while in the NICU.
3: Number of times Dax was intubated while in the NICU.
8: Number of days Trev was in the NICU without Dax.
137/105: Trev's blood pressure at it's worse.
3: Number of different meds Dax came home on.
2: Number of different meds Trev came home on.
3: Number of blankets that were donated, each, toDax and Trev in the NICU
5# 6.5oz: Trev's weight when discharged
5# 3.4oz: Dax's weight when discharged.
0: Hours Matt and I have slept at the same time since Dax came home.
7: Approximate number of hours Matt and I each get of sleep every night (we have a good system)
57: Number of 2 year old temper tantrums Athan throws daily (or something like that....)
25: Approximate number of diapers we go through daily.
4: Number of Dr. appointments we will be going to this week.
400: The mL amount that is my goal for my boys to eat daily.
390: The average mL/day Trev has eaten since home.
415: The average mL/day Dax has eaten over the past few days.
5: The time in the morning when I go to sleep and Matt wakes up.
10: Number of people in our lives who would immediately drop everything and be here for us at 2am if we asked. For these people, I could not be more grateful!
2: The number of days I have had my whole little (er... big...) family at home together!!!
Saturday, September 3, 2011
68 days and in the home stretch!
Well, in the 23 days since last doing an official update so much has happened!!! I could spend 5 hours giving all the crazy updates, if I had that kind of time... but I don't! Therefore, I am going to give a very simple and quick update about each boy,
For both of them ---
Feedings- both boys were introduced to bottle feedings just before 34 weeks gestational age (around 9/17) They started off doing 1 bottle feed a day and they would suck about 3-6 mL of their 30-35mL feeds and we then put the rest in the tube. Then, the series of events proceeded really quickly in the following order... finished their first full bottle>moved to 2 bottles per day>finished both>1 bottle, 2 tube pattern> finished all feedings well>2 bottle, 1 tube pattern> finishing all feeds well.... Now, we are hoping for the report tomorrow that they will be on a 3 bottle, 1 tube pattern and the next step after that is all bottle!!! I love that both boys have kept up with eachother in the development of their bottle abilities!
Location- The NICU has 1 large room and 1 small room. The big room is for the sicker babies and the smaller is known as the "grower/feeder room". A few weeks back, the boys moved from the middle of the big sick baby room, to the corner and into a crib! Then on 8/31 they were moved to the grower/feeder room! Best part of the move?? Their is a window and Athan got to see his brothers!
Their nurses - When the boys were first born, they each had a personal nurse 24/7 who pretty much sat in front of their bed and kept a constant eye on all their vitals. Now, there are 6 babies in the grower/feeder room and only 2 nurses total!
Dax
Oxygen- Dax came off the nasal cannula for 2 days the first time and then needed to go back on it. Then, about a week later(around 8/25ish) came off the cannula for good and has been doing very well with his O2 saturations since!
He has very steadily gained weight and tonight he was at a whopping 4lb, 15oz! We're hoping to hit the 5lb mark tomorrow!! Dax seems to have a very calm and curious demeanor to him. He rarely fusses and loves to just look around during his bottle feeds.
Eyes - A common preemie problem is known as Retinopathy of Prematurity (ROP). If you look at any diagram of a haelthy eye, you see the blood vessels all grow outward toward the pupils. ROP is when they grown in an abnormal way and become somewhat mangled. There are multiple stages of ROP, the lower the better, as well as 3 zones. The higher the zone, the farther it is from the retina which is better. Currently, Dax has stage 2 ROP in zone 3. stage 1 ROP is common in all preemies and typically goes away as can stage 2. HE will continue follow up eye exams. If ROP does fully develop, it can lead to blindness, but if caught early enough it can be treated with laser surgery.
Trev
Oxygen - Trev has been off of O2 completely for almost 3 weeks now. He is doing great!
ROP - Last checked, Trev has stage 1 ROP in zone 3, which is better from his first exam of stage 1 ROP in zone 2.
A few weeks ago, Trev was very fussy all the time, had some trouble gaining weight and even lost almost 3oz in 2 days. He had very high blood pressure during this time too. A normal blood pressure for a baby his size would be something like 80/40 while a normal blood pressure for an adult is 120/80. Well, Trev's was as high as 137/105. VERY HIGH! The nurses didn't tell let on at the time, but they were getting worried as it was so high at times that the cuff couldn't even get a reading. First, the Dr, took him off of his caffeine (used as apnea prevention). Then they performed a series of tests one of which was an xray and doppler scan of his kidneys. Well, the radiologists reports seemed all over the place and it seemed that the conclusion was that his right kidney was functioning normally, but his left kidney had blood flow through the middle but not the top or bottom. The Dr. decided to send the scans to a pediatric nephrologist at UC Davis to be reviewed by someone who had more experience with preemie scan reading. The nephrologist believes that there is nothing to worry about and any abnormality of his kidney function is something he will grow out of.
We have since put Trev on blood pressure meds. He began on captopril which he was given every 8 hours and was on this for about 2 days with no improvement and then the Dr. switched him to, I think it's called enalapril. The enalapril worked amazingly and quickly too! Within a short time (a day maybe??) Trev's BP was down to a normal level. You could tell when visiting him that he felt soooo much better to. He was instantly in a better mood and less fussy with a better, pinker flesh tone. He was on the enalapril for a short time and the Dr. has since taken him off of it as of about 4-5 days ago and still no high BP! We will be taking Trev for a follow up with the pediatric nephrologist after they have been discharged.
Since Trev had a hard time gaining weight for a short time, he is playing catch up to Dax. At one point Dax was a whole 3/4lb heavier than Trev. But Trev is catching up and is now only 4.6 oz behind at 4lb, 10.4oz!
It is amazing how much the last 68 days have flown by and yet so much has happened. Dr. Jain told us yesterday that we can expect to take them home in about a week and we are now in a bit of a panic with so much still to do to get ready for their arrival! I can't wait to sit in my back yard with a sleeping baby in my arms and my feet in the pool while Athan splashed around!
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