Thursday, August 27, 2009
Both boys had their eyes checked again this week. From start to finish it took several hours with three rounds of eye drops and lots of time in between. Really neither boy complained at all, even though Nicholas was even missing a feeding. Everyone at the clinic commented how good the boys were (even Mommy and Nana were pleasantly surprised). Even better this is the last eye appointment the boys need for three more months as we were told both of their eyes are now officially matured--no more ROP (eye disease of prematurity)!!!! Another obstacle overcome and we are soooo thankful.
Today we visited the pediatrician again for a "well-baby check". We love our pediatrician, she spent a lot of time getting to know the boys in the NICU, before she even had a true responsibility for them and she has a lot of experience with preemie issues as well as developmental and physical disabilities. We went over their medications, health issues, immunization schedule and discussed how we could wean them off of some of their medications slowly (yeah!!!).
We talked about recommendations for keeping them healthy during the upcoming cold and flu season. Obviously the news and predictions of a rough season coming up have got us feeling anxious. The doctor agrees that this first year will be tough given how frail their immune systems are and their current lung disease. A simple cold right now could land them back in the hospital. Their lungs will continue to generate new lung tissue but it may take a year or two before they are functioning optimally. Its a difficult balance between wanting to share our babies with the world but not wanting to take any unnecessary risks with their health either. I know we can't keep them in a bubble certainly but we will be adhering to recommendations about minimizing having them in crowds, limiting their handling by too many people during this first cold/flu season, asking our friends and family who do visit to be vigilant about hand washing/purelling and to please stay away if you or anyone close to you is under the weather. We appreciate everyone's understanding about this.
I do think one of the best parts of the two hour visit was seeing how well they continue to grow. They may not be on the growth charts yet, not even on the preemie growth charts yet given that they are almost officially four months (next week), can you believe it because I certainly can not. But we are so thankful for every single ounce they gain. Nicholas is now up to six pounds, 11 ounces and his brother is tipping the scales at seven pounds, 6 ounces!!!!! They may be teeny tiny still for four months but they are certainly a far cry from the tiny frail babies we used to know!
I will be taking Alex for his cat scan tomorrow and we will find out soon when he will be having his shunt converted to the VP. Thanks for keeping the boys in your continued thoughts and prayers!
Monday, August 24, 2009
Alex is doing great and I think since sharing a room with his brother has found his voice a little more as well but overall he seems to be quite content. The boys are in their own room and sharing a crib these days but luckily Alex tends to sleep through the ramblings of his neighbor. Mom and Dad are sleeping a little better too with the help of a video monitor. I have to say I was reluctant to spend the money but Dad insisted and now I think I rely on it more than he does. It is really nice to be able to "see" them anytime and especially when they are fussing to determine if they need tending to right then or if they look like they are just on their way back to sleep.
Anyway, thought we'd share a few sweet pictures from the weekend. (We just can't seem to stop ourselves from snapping away).
Photos of Nicholas:
Friday, August 21, 2009
The boys have more appointments in a week than most of us have in a year. This week alone they've had pediatrician appts, neurosurgery follow up, home care nursing visits, therapy and an early intervention consultation. Alex will be having a cat scan of his head next week to determine how much fluid is currently in his ventricles. As you can see from his pictures, his sweet little bubble isn't so little, and his forehead and overall head circumference is getting larger. His neurosurgeon anticipates that he will be admitted for a VP shunt early September but the cat scan results will tell us if it needs to happen sooner or if we can buy a little more time. The more he is able to grow prior to the shunt may help lessen the future revisions that he will need. Children often need a number of shunt revisions as they "outgrow" their current ones.
And growing he is!!!! He came home a week ago at six pounds, two ounces and now he is an amazing six pounds, 11 ounces. Nicholas is starting to get the hang of this growing thing too and he is now six pounds, 2 ounces. His little cheeks are starting to fill out a bit like his brothers and we are just thrilled that they both seem to be thriving at home.
It is truly indescribable how it feels to be finally be settling in at home with our family. We grow more in love with these little guys by the day; and we are enjoying watching our friends and family as they get to visit and begin to know our boys as the amazing little ones that they are. Thank you to all of our friends and family as they continue to love and support us through this incredible journey. We are so blessed by all the cards, notes, meals and visits. A HUGE thank you to my mom who has taken two weeks of her vacation time to spend with me and the boys as we figure out caring for two newborns with extra needs while Mark returned to work. The boys are thoroughly enjoying time with their Nana and so is their mom!!!
Here are just a couple of photos we love.
Nicholas wondering "wait, who is this guy?"
What? he's sleeping in MY room?
Monday, August 17, 2009
We are in the very beginnings of adjusting to life at home with two newborns and I have to say as thrilled as we are, it is for sure very daunting. Somehow both boys are on the exact same schedule, literally crying within two minutes of eachother to be fed, changed, etc. Nicholas is still recovering from his surgery and seems uncomfortable at times still, I think our neighbors the next street over could even bear witness to that (yes he has really developed quite a set of lungs :) which our hearts are grateful for, but maybe our ears not so much right now, ha,ha.
We are already slowly trying to get them on slightly different schedules so its more manageable and trying to get the medication schedule organized as well. Actually the medication schedule for both of them is quite a job in itself, they are each on more than a half dozen medications and several of them have to be given up to four times a day at 4-6 hour intervals around the clock but we will get it down. And we hope that as time goes on, they won't need so many.
Mark and I are each taking shifts during the night which helps each both get a solid block of sleep but I am a bit stressed at the thought of overnights when he returns to work. Any parents of twins reading, I am sooo open to any tips or advice you can throw my way. (Thank you for all the comments and email suggestions about getting them on the same feeding schedule; I do hope to have them on the same schedule when they are a bit older but right now they have to feed sidelined due to choking and gagging issues per the NICU, but we are hopeful that they will outgrow this soon and it will make feeding time easier. )
Frankly I am hoping we win the lottery so we can both have the life of "leisure" at home. Notice I said leisure, ha,ha. No but seriously, we've already won the lottery and I know once we get into some sort of routine, things won't seem as overwhelming.
For now I know I will get through the unknown of this all by living minute to minute and thoroughly enjoying being able to have all my favorite guys in the very same place at the same time.
Its been a very long way to get here , 107 days to be exact but we are sooo happy to finally be starting this new chapter in our lives!
Saying goodbye to the NICU with our very own amazing miracles!!! Thank you to the wonderful, compassionate and dedicated NICU staff that not only only took such good care of our boys, but also their parents!!! We've met some very special people in this albeit difficult journey and we will never forget you!
Rolling out in their Cadillac (thank you again Alan, Connie, and Grandma Vidaurri--the boys are riding in style :)
Settling down at home
Guess the parents aren't the only ones exhausted!
Trying to get organized, these are the medication schedules for the boys. The nurses made these sweet little boxes for their meds, Those nicu nurses have many talents!
Sunday, August 16, 2009
Now that this has been cooking in my mind for a bit, I admit that I'm not sure which feeling is overpowering me more at this time: happiness or panic at the thought of having two newborns at home for the first time. That's not true, happiness and excitement IS over riding the fear, but the fear is right up there :). Alex has been breaking us in ofcourse and we've just gotten into a groove with his feedings, sleeping, and medication schedule but I am nervous how we'll juggle it all when we put another newborn in the mix and then ofcourse Mark going back to work soon; and yet I've never looked so forward to a challenge before!!!!
Friday, August 14, 2009
We made it to the hospital in record time and I even called a dear friend who lives nearby the hospital to see if she could meet us to watch over Alex while we literally ran to see Nicholas. She dropped everything to help us (thank you Lisa!!!) and we were so grateful that everything happened pretty smoothly after that. We got to hold and love on him before he got taken away.
The surgery went very well and we even got to see for ourselves afterwards that things....ahem...look very different, much more normal in the nether regions. He will be sore and swollen for a couple weeks but his intestines are now back up where they belong and no complications are anticipated.
The hardest part of all of it for Mom and Dad was seeing him back on the ventilator and later in the day, fighting against it and wincing, etc. The fighting was a good sign but seeing your child in any discomfort is 1,000 times worse than going through the discomfort yourself. I've heard many people say this over the years but it takes becoming a parent to truly understand it. I know this state was temporary but seeing him like this brought me back to much darker memories and all the more grateful of how far both of the boys have come.
Thanks to Grandma, Mark and I both got to spend a lot of time back with Nicholas after surgery and Alex had a full day seeing the other side of the NICU. He can't wait to have some hanging out time with his brother though.
Mommy snuck up to see Nicholas again tonight while the other boys stayed home and cuddled. The nurse was very optimistic with how Nicholas was doing but all I could see was when he wasn't drugged up, he was uncomfortable and fighting against the ventilator. Needless to say I came home feeling very helpless and stressed out. Because of his severe lung disease, we weren't sure how long it might take him to come off the ventilator but it couldn't be soon enough for any of us.
Then the best news came about 9pm tonight when his nurse called us to tell us that they took him off of the ventilator already and he's doing GREAT!!!! She also said that she is starting to hear bowel sounds so more than likely they can try to start feeding again tomorrow. We are so relieved and thrilled and feeling so absolutely blessed at the gifts we continue to receive.
I can't imagine that I won't say this to my boys every single day for a long time to come but just in case I forget and they read this someday when they are older: thank you, thank you, thank you to two of the most amazingly strong, courageous, resilient, and simply awe-inspiring boys that a mother could not even have dreamed of asking for. Thank you for fighting so long and so hard to stay here with us, its been a very long three and a half months, your entire life, but I promise to do everything in my power to make sure it only gets better from here (alot better)!
Thursday, August 13, 2009
We are slowly acclimating to life at home with a newborn. Which basically means learning how to get by on very little sleep. (Hint: For us, it involves washing down some liquid black gold) :)
Our first night Alex slept pretty well but we predictably did not. We were constantly looking over at him, checking that he was okay. He's a pretty noisy sleeper actually (must take after his Dad). He is constantly making cooing sounds (so cute, even at 2 in the morning---for now at least), and he is pretty congested so you can literally hear every breath he takes. Reassuring definitely but still pretty noisy. Lastnight was better as we took the night in shifts so we could each get a solid four hours of sleep. I'm not quite sure what I'll do when Mark returns to work, yikes.
We already had our first doctors appt. with the pediatrician so Mom and Dad got to practice getting ourselves ready, as well as baby and get out the door by 10am. We did pretty good for our first try, but we have LOTS of appointments in the future, too many for Mark to keep taking off from work so I am wondering how things will go when there are two of them and one of me. I'm sure I will get it down, just need to work up my confidence :)
Anyway, Pediatrician says Alex is doing GREAT, and weighed in at 6 pounds, 4 ounces!!! Another WOW!
Mommy went to Visit Nicholas yesterday while Daddy stayed with Alex. He's doing well also but it IS as heartwrenching as I thought it would be to have to schedule my time with my boys separately. It was really hard to leave Nicholas. The only thing that comforts me is hoping that this time will be brief and that we are almost there. We are day 104 of this journey and happy to have it all in the rear view very soon.
Nicholas's hernia surgery is tomorrow, we are just waiting to hear about the time. I am very hopeful that this will ultimately make him feel so much better but am getting anxious thinking about Nicholas having another surgery, being on the ventilator, etc. We would be grateful for continued prayers for him to have a successful surgery and speedy recovery so he can get home with the rest of his family where he belongs!
Alex lounging around...
hmmm, very little hair but starting to look a little reddish....
Tuesday, August 11, 2009
Alex Leaving NICU
As always, he's unfazed about all the excitement.
Home Sweet Home!!!!
Monday, August 10, 2009
We've talked with their nurses and we are taking the suggestion of bringing Alex to the NICU waiting room while we take turns visiting with Nicholas for an hour or two. I'll do this around Alex's schedule so he can sleep while we are there but I just need to be near in case he needs me. A well meaning friend asked if I was sure I wanted to bring my baby back to the NICU after he's been discharged. Well, no its certainly not ideal, not a bit of this is but its the best that I can come with given the circumstances. Some NICU's even let you bring your baby's sibling back with you while you visit your other child but our NICU does not allow any children under the age of three. Alex is already getting scheduled for about a hundred follow up visits at the hospital shortly after he comes home so I might as well get used to getting him up there and besides, I can't think of a cleaner waiting room than the NICU one and one where everyone is about as well versed in the art of severe hand washing as one can be.
I guess this comment is one that reminds me I need to get growing a tougher skin as a mom. As a new parent I know we will get many well meaning "tips", opinions, advice and questions about why we are doing "x,y,z", shouldn't we do it this way instead, etc. I can at least take a great deal of comfort in the fact that even though we are new parents, we've had the great fortune of being in an atmosphere that is continually giving us information in how to care for our babies with their specific premature health and even developmental issues in mind. Whenever we've had a question, there is always someone right there to help us with the answer (were still wondering how we can get this service at home). No one ever wants to have their children in the hospital, let alone for more than three entire months but there is one huge advantage to this: We already know so much about our babies before we even bring them home. We've gotten to know them, their needs, their personalities. No, we haven't had the privilege of having them in our own home yet, we haven't had the sleep deprivation that comes with a newborn (or two) yet but we DO know them!
We know that they both sleep with their eyes slightly open at times when we swear that they must be waking up, but if we let them, they sleep an hour more. We know that Alex is a very noisy and restless sleeper, he moves his arms ALOT, grunts and coos in his sleep and will probably keep Mommy and Daddy up a lot in the upcoming nights just because we will be watching him and listening to him. As loud as he is sleeping, he's pretty quiet awake, He rarely cries unless he's REALLY hungry or over-tired. Nicholas on the other hand can belt it out awake when he's hungry, tired, and even in his sleep. When we first heard him do this, we were amazed that that noise was coming out of our tiny baby, I remember Mark and I looking at eachother thinking "oh boy".
We know that Nicholas is a leisurely eater and even when he's hungry, needs lots of rest breaks and burp breaks and he will likely keep going when we might have thought he was done while Alex will slurp down his whole bottle in 10 minutes if you let him. We know Nicholas wiggles ALOT in his sleep and will manage to get himself sideways at the bottom of the crib and Alex whines just a little and puts his hands all over his face when he's getting tired. We know that Nicholas will take up to three diapers at one dirty diaper change because he likes to wait until your just about done before he truly finishes, and oh how he likes the fresh air so watch out :). I could go on but you get the point.
After having been on this journey, I am truly in awe of brand new parents who have to bring their little ones home for the first time just 48 hours after just giving birth to them, still exhausted and without a manual. I honestly don't have a clue how you do that!!
Thursday, August 6, 2009
And sweet Nicholas
I've been a little late posting these pictures but did you notice anything different in these photos? Go on....look again.....
BOTH boys have naked faces for the first time ever in their lives. They came out last week: No oxygen, and now no feeding tubes!!!!!!
Nicholas is working on taking a little more from his bottles to meet his daily goal and they have increased his calories to try to get him to put on a little more weight; and Alex, well he doesn't need any coaxing...he's loving his bottles and gulps them down in no time and frequently asks for more :) I think his adorable cheeks give him away!!
Wednesday, August 5, 2009
So we wait...We might literally find out for sure that we are bringing him home that very same day that we get insurance approval but technically it could be any day this week or even early next week. To be honest, it is kind of like a win-win situation for us. We are very excited to bring Alex home and to know that it is just about here is indescribable. But if he has to stay a bit longer, thats okay too because it affords us the ease to also spend a lot more time with Nicholas as well as getting things ready at home.
Tuesday, August 4, 2009
I've already met with the discharge planner who is working on getting insurance approval for their formula (its typically prescription only although I have seen it on ebay for about 45.00 per can (what?) The boys have had such a long road and have tried multiple things before turning to this formula so we are hoping that the insurance company won't drag out their approval. In the long run, I would expect that the formula will be cheaper for them to pay then the daily rate in the NICU but what do I know.
Mark and I are frantically getting things prepared (as prepared as they can be) at home. We've practically lived at the hospital for the last three months and we've done things here and there at home but I guess there was a part of us that just didn't think this would happen yet.
As excited as I am about Alex, I'm sad about Nicholas but we will get through this and knowing that we are on the last leg of this journey does help. I just can't imagine being ready to leave Alex after just finally bringing him home (even if it is just a couple hours with my wonderful family) but I know my heart will ache being away from Nicholas so we will have to do whatever feels comfortable at the time and go from there.
I met with the surgeon yesterday as well to discuss Nicholas's hernia surgery. He examined Nicholas's hernia and his exact words were "yowza". Yes--they are that big, poor thing. I just know he will feel better after getting this repaired. But having said that, the surgeon said the earliest slot he has is not for a week from this Friday. He saw the look on my face that I was not trying particularly hard to hide and he apologized. I explained that this is really the only thing we are waiting on before we can bring Nicholas home. He stated he understood but he had nothing open until then and its only his team that does the pediatric surgeries but that he could put him on a cancellation list (I'm praying for this). He said he does not feel comfortable sending him home prior to this surgery and neither do his other doctors but he assured me most babies are released 4-5 days after surgery, even with previous respiratory issues like Nicholas has had.
I just keep reminding myself that although the next couple weeks will be challenging in a variety of ways, we are almost there and will have the whole family together very soon!!!!!
Sunday, August 2, 2009
The boys are three months today. They are probably a couple of the smallest three month olds at four and a half and five pounds but so darn cute all the same. Where to begin? I can’t believe its been only three days since I last updated and yet there is so much more that has happened.
For starters, Nicholas came off of oxygen!!!! Alex had just come off of it earlier in the week but we would have never expected Nicholas to not require it. I thought for certain we would be taking him home with it because he has needed such high amounts for so long. It never ceases to amaze me what these little babies can do.
They have both come leaps and bounds from last week with bottle feeding. Nicholas is gradually taking more and more although he still struggles with this. We think his reflux and issues with his hernia and constant gas pains are interfering with his efforts. He regularly gags and chokes during bottle feeding which is not much fun for either of us and I feel terrible for him. (We are currently waiting a surgical consult to find out when he can have his hernia repaired). The good news is that he definitely seems more interested in taking the bottle and feeling hungry and actually even on a bad try, he still takes about 30cc’s, and on a good day the whole bottle (55cc’s).
Alex is now taking full bottles EVERY feeding for the last couple of days. It is wonderful. He lets you know when he’s hungry and he wolfs it down, today he finished his bottle and we swear he would have drank even more if given. Right now they are both off of continuous feeding and they are recording what they are able to take over a 24 hour period to determine if either still require the feeding tube or if it can go away. We are pretty certain that Alex will likely lose his feeding tube tomorrow because he’s doing so well and gaining well. He tipped the scales at 5 pounds, 3 ounces today!!!! Its shocking that they were only taking 5-10cc’s just a week ago to where we are now.
We are a little more worried about Nicholas, he doesn’t seem to be gaining, and in fact has lost some due to all the effort he expends. He fatigues a lot faster. He’s also anemic on top of everything else which could be making him more tired, definitely more pale. They don’t want to keep giving him transfusions because than his body will never learn how to do it on its own so we just watch and wait. All in all I am guessing he’ll need the feeding tube a bit longer until he can manage more bottle feeding but we are thrilled at how much progress he has already made!!!!
And the biggest news was that Mark and I heard from one of Alex’s nurses that the team would likely be discussing discharge for him this week…….yep, you read it right. She says the feeding issues were really the last major hurdle for him and everything else could probably be handled as outpatient appointments. You can imagine our sheer elation followed by terror and angst. Terror because who ever feels ready to bring their new baby home for the first time, let alone one who has had such a rough road, is still on about 10 medications, and has this huge bubble on the side of his sweet little head that we are told is all fine except he will need to transition to a VP shunt in the near future, just probably not now but we will have to be on the lookout for signs that his shunt is no longer working properly. Want to know what the signs are? Irritability, tiredness….ha,ha….that doesn’t describe any other babies, does it? Okay to be fair they also say he could throw up or possibly not want to eat, which would definitely be different for our growing boy but still….I am afraid I will be a wreck until its finally transitioned (oh wait, we’ll have to look for signs of malfunction even with the new shunt so scratch that, I’ll be a wreck probably until……well experienced parents say about however many years you are a parent.. hmmm….oh well then, might as well start getting used to it.
Then comes the angst of knowing while we get to bring one of our babies home, the other is still a ways behind him. I can’t imagine leaving one of my babies in the hospital knowing that when I have his brother home, I won’t be able to just get in the car and visit with him as I do the both of them now. Don’t get me wrong, I’ll be sooo happy to have Alex home but having the other still in the NICU makes my heart break already and it hasn’t even happened yet. I know I have a very willing family who will take care of Alex for me a couple of hours so I can visit with Nicholas and I’m sure it will have to come to that but who is ever ready to leave their newborn baby, let alone my preemie who is just home himself from the hospital. I know other parents have survived this, I know inevitably we will too, but I don’t have to like it and I may even have to cry it out sometimes to get it out of my system and then get on with it (so if you’re around me at one of these times, just bear with me, sorry Mark).
We will wait to hear what the team says tomorrow about the exact discharge plan. Mark and I are praying, ironically that maybe Alex will stay just a little longer so the time between them each coming home is less and we can be with both in the same place for now. Crazy that we would actually wish that after all of this time of desperately wanting out of the hospital. But I guess I should have emphasized we want out of the hospital with both of our boys!! We don’t know how much Nicholas’s surgery will set him back due to having him need to go back on the ventilator for it but we pray that he can get this done soon so he can start feeling better and hopefully have a very quick recovery! Thank you everyone for their continued thoughts and prayers!!!
Nicholas without oxygen. Only one more tube to go……
Had to take a picture of Nicholas with an oxygen saturation of 100% without any extra oxygen, just amazing!!! We have such a love/hate relationship with these monitors.