Breathing easier!!

What a week its been. I'm thrilled to report that Alex is doing GREAT! Whether it was just needing extra time or the steroids (or all of this with a healthy dose of prayers), he's pretty much back to before the surgery. He's our sweet happy baby again, sleeping for the most part through the night, off of the pain medication, back to his previous level of oxygen almost, and playing all day. He's breathing easier and for this, so are we!!!

The other big news in our life is how quickly things are happening with the house. We've met with the architect this week, and had plans drawn up. I"m sooo excited to see it all fall to place on paper. The house will be completely accessible, zero clearance entry ways into the home, wider door ways, wider hallways, extra clearance into rooms, completely accessible bathroom with room for a roll in shower, and in general a very open house plan. It is even more than I could of hoped and dreamed. We don't "know" for sure about Alex's future needs, but since we had the opportunity to build we wanted to try to think of everything that might make life a little easier, at least at home. I am so excited about this!!! Our hopes are that they will start building by the end of October with a finish date of about end of February. We can stay in our current home til about end of January so we hopefully will have just a few weeks to make tracks somewhere else temporarily. Oh right, about our house:

We received two offers in a little more than just a week on the market and we've accepted one. We've already had the house inspection and because I was home with the boys, even got to meet the hopeful buyers. They remind me so much of hubby and I when we moved in, just starting out, wanting to get settled, begin and raise a family. The woman is even a social worker (also my profession)!

During our acceptance, we asked if it was possible to rent back from the buyers for a period of time after closing. This is because we did not expect things to progress this quickly in this market and we hadn't even had a chance to pick our house plan yet, let alone begin digging. I am dreading moving our family twice in just a matter of a couple months, especially in the heart of winter. I didn't expect that the couple would agree but was shocked when they offered us the maximum time allowed to be in the house after closing (60 days). I mean when you are excited about moving into your first home, can you imagine putting that off for two more months just to be "nice"? that means they won't move in until after the holidays. I am sooooo touched and grateful for their generosity. And I was so happy to be able to share that with them in person today at the inspection.

We are so amazingly blessed and know that God is weaving the right people in our lives to ease this transition.  I pray that this couple is as richly blessed in this home as we have been!!

STANDER

Alex's stander arrived yesterday.  I think it was love at first sight for both of us.

I really thought I'd feel sad, facing the reality of his first big piece of equipment. I thought it would be a physical right in my face reminder that he has a disability. Maybe that will come later but right now all I feel is excitement, sheer happiness for him. Alex did that for me. Alex like so many times before is the one who is teaching me. He wasn't nervous, anxious or sad. He got right in and clapped, slapped the wheels and it was like he was at "home" with his wheels. We can't predict the future but at least for right now, this is how he can be mobile. And he liked it!!! so his momma really liked it. I can't wait to watch him learn, explore, get around. Its not at all what I thought it would be like watching him in it, its liberating!!!

We have it on loan for a few days so we can prove to the insurance company that he can figure out how to use it and benefits from it. The traditional standers actually can't accommodate him because he's such a little guy but this stander can fit him so that should help justify with insurance. I'm confident that we'll manage to get him one, just not sure how long that takes so the hard part is giving this one back in the meantime! We are going to beg, beg, beg to borrow it until someone else needs to trial it. Here's hoping!

Oh and just as sweet: Nicholas is everywhere these days too. He pushes everything in sight so he can walk. You can imagine his excitement when he found something new with wheels on it. I think he loves it as much as his brother. See for yourself!!

so tired!

Still healing. This past week has been tough. no two ways about it. The surgery took more out of Alex than we ever expected. He has slept more, cuddled more, cried more than we can remember. we are still dosing tylenol and motrin pretty much around the clock. We are almost a week out from surgery and have been now trying to let him sleep longer at night before waking him to give him his medicine but he's still letting us know he needs it. His voice is still hoarse and to hear him cry, cough and cry more because it still hurts him, its heart breaking. We try to explain that he WILL feel better, its just taking a bit longer. I hope he understands somehow. Up until lastnight, he was still on 4x the amount of oxygen then he was on prior to the surgery and we were worried that he was still having so much pain, not able to drink or eat much AND needing the extra oxygen. We coudln't help but wonder "is this normal?". We called ENT, they suggested we also talk to his pulmonary doctor and then they wanted to check him out at his pediatrician this weekend at on call.

The good news is that they don't think anything secondary is going on, his lungs are still clear even though he sounds sooooo congested and coughing a lot. They think he is still very inflamed from the surgery and thats why he's having more trouble with the oxygen, eating and drinking. It is sooooo not like our little man to fall asleep on us anywhere, let alone sitting outside on a blanket in the grass with his favorite "zoom, zooms" going by. He usually can ONLY fall asleep if he's flat on his back either in his crib (preferably) or in the car seat (reluctantly). He may eventually turn to his side or roll to his tummy but he always starts out flat on his back, never curled up with either of us. All week he has only been able to be awake a couple hours, sometimes less then before he's resting his head on our shoulder. Part of me LOVES, LOVES it because who can resist their baby curling up into you and you feel the weight of their body relax as they begin to snooze. That part is soooo sweet. The part knowing that he must be so tired and not feeling well to actually be doing that is the not so great part.

I was also concerned about constipation (the SB mommies will soooo get this) because it had been days since he has gone and unfortunately the extra sleepiness, not wanting to eat/drink, vomiting are also signs of shunt issues which can be exacerbated by what? yep constipation. The tubing from the shunt threads down to his belly so it happens sometime that if you're backed up, it can also clog the tubing to the shunt. Not always but it happens and has happened to babies of mamas I know so its running in the back of my mind. Ugh so ofcourse this is on my brain and probably will remain until he's really more back to his sweet sweet self.

They saw him this weekend and decided to put him on steroids (prednisone) for the next week to help with the inflammation and just after one dose, he already seems to be breathing easier, we were able to reduce his oxygen over night already. He's still sleeping a lot more than his normal but when he's awake, he has just a bit more pep. Oh to see a smile from him after days of not is an even more beautiful thing than usual. I swear its his way of telling us its all going to be okay. It almost feels like we have been back at the newborn stage where we are awake every hour, every couple of hours while he wakes, or the alarm beeps or just that instinct of needing to check that he's okay. Its been such a long long week in the way of "did we do the right thing?" "did this surgery do anything to help him?" "when is he going to feel better?" "Is this really JUST the recovery?" "what if something else is wrong and he's trying to tell us and we are not getting it?" ugh. I hate the worry train!! But then he looks at you with this all out grin and everything is right in the world again!!! (this definitely needs a pic here so will upload one later)!!

oh and the other part of our exhaustion? We've had to show our house 4 times in the last week as well and today was the open house. so no "I'm too tired to do the dishes right now", or " its okay if the laundry is piling up a little, or that the floors need to be swept", no "I can get to that later after we get a good night sleep." No we've had to keep it model ready no matter what. Its actually been good for us believe it or not. It feels amazing when your house is clean and organized and uncluttered. You really do look around and feel a little less stress, a little more relaxed because the space around you is less of that. really. Our house IS nice. Why didn't we live more like this before? Then the boys get up and then the trail of stuff starts all over again, and well we can just blame the mess on them ha,ha.

oh and stay tuned, tomorrow is a big, big day that we've been waiting for! Alex's mobile stander is coming!!!! I am so anxious to see what he thinks of it, how he does in it, praying he likes it!!!

surgery update

Sorry its taken me a couple days to post an update. Its been a long couple of days. Alex's surgery went well overall. I was a little disappointed to hear that once they got in there that even his adenoids weren't overly large so no one is really sure how much improvement to expect in his apnea. They did take his adenoids and most of his tonsils. The surgeon was clear that he did make more space for him but just have to wait and see if its enough to make a significant improvement.

Alex and daddy right before surgery, 

Alex is loving the attention of the nurses 

and wants to get out of Daddy's arms and flaunt his stuff.

little does he know why he's there.

I guess ignorance really can be bliss!!

We really weren't prepared to see him after surgery. I don't know what we expected. I guess knowing how many older kids go right home from this type of surgery made us overly optimistic. Alex was in a lot of discomfort post op. He was crying but you could barely hear him make the sound at first, he was beyond hoarse which I understand is quite normal (the hoarseness). He had to be intubated so that also makes it worse. They ended up giving him morphine for the pain which ended up making him very sleepy most of the day but at least he wasn't in pain. Hearing him while he slept worried us a great deal. He sounds terrible. We've heard his snoring intermittently before but this was LOUD, gurgley, then after all that noise, a scary kind of silence and then like he was trying to find his breath, gasp and loud again. Much like you would expect apnea to sound like, he just didn't sound like that to us beforehand. We talked to several doctors once we got to the peds. intensive care unit, and everyone reassured us that this was temporary and just due to all of the inflammation post surgery. He sounded better awake but even then just soooo congested, as if someone pushed every bit of gauze they could squeeze up in his nose until there was almost no room left. It was strange to see him with his mouth constantly open to try and get air. He had so much inflammation that he is back on oxygen day/night. Again they reassure us this is just temporary, that he will get worse before getting better. I am wondering if his extra requirement of oxygen again is due to the fact that he had just recovered from pneumonia a couple weeks ago and it may be playing a part in this.

It is sooooo hard to see your child suffer, no matter how temporary. Sitting in the waiting room while they were putting him under, I counted up how many times we've sat in a room like this for he or his brother. For Alex alone this was his 5th surgery in his 16 months of life. This was probably the most minor surgery yet but as I've said before, it never seems to feel minor. It makes matters harder to wonder if putting him through this will really be enough to help his apnea or not, I just keep praying on this. I just can't look at him now and think it was for nothing, it just can't be.

Another thing that weighed heavily on us was the fact that Alex has been scheduled for another surgery just at the end of next week. Its been scheduled for months with his urologist and its a 3-4 hour surgery. His doctors and anesthesiologist said this surgery should not interfere with that one but after seeing how hard a time he's having, Mark and I just can't see to put him through another intubation and surgery so soon. I will be calling the urology office to cancel and reschedule and actually feel very much at peace with that decision.

One of the good things was one of the intensive care doctors just happened to also work for the sleep clinic and she was the one who interpreted Alex's results. She stopped in to see him, how awesome is that? We went over the results in detail and talked about whats next. We will repeat the sleep study in 8-12 weeks to see how things look. She's hopeful that things will have improved even somewhat but we will assess and go from there. She did talk about several options if needed but I won't go into now. One day at a time. It was nice just to be able to talk to her and understand his results better.

We stayed all day, overnight in the PICU and much of the following day and the care was absolutely wonderful. Even though they had to wake him up every 2-4 hours for pain control, they did everything they could to cluster their care, vitals, and other medicines so they wouldn't have to disturb in again. They completely got how vital his ability to get rest was as well. Other hospitalizations we've had, I've felt like I've had to to be the warden by the door and asking people to get on the same page with their care so they weren't' waking him up every hour or two for things they could have done at one time and given him a chunk of time to sleep before waking him again. I was sooo appreciative that I didn't have to fill this role this time and I could just snuggle my baby.

Alex is a love but he's never really been much of a snuggler. He's happy to have you pick him up, don't get me wrong but he's just as quick to see something he wants and rush to get out of your arms and go play. Its only when he's not feeling well that he lets you really hold and snuggle so I have to say even though it was bittersweet, I got lots of my snuggling time in. He just melted right into my arms and slept. As every parent can attest to, having your baby curled up in your arms, so soft and so sweet, well that part was just heaven. At 16 months old, even if you adjust his age for his prematurity, he's 13 months, hmph I don't know how much longer I can get away with calling him a baby. Well.....he'll always be mine--as my mama says, still your baby when there 30 (cough) something.

such a cutie, and sooo happy to be at home 

in his own cozy bed!!

The best news is we have him back home now which we know always seems to speed his recovery. He has gotten really great sleep lastnight and today and we are hoping this gives him the opportunity to heal faster. He's still having discomfort while eating/drinking even with tylenol/motrin around the clock and his hoarse cry when trying to eat/drink is heartbreaking. We know that every day will get better though and we are so thankful for every ones well wishes and prayers. We always felt that Alex was in the best of hands and had the best of care (as well as Nicholas).

On that note: a very special thank you that always seems so inadequate to their Nana who took vacation time from work to help us out. She spent a couple of very long days doting on brother Nicholas while Mommy and Daddy took turns caring for Alex at the hospital. We know that Nicholas loved having some very special one on one time with his Nana and we are all so very blessed to have your love and constant support!!!

 Nicholas and his Nana

(the quality of the pics are not great

but the love thats in them is priceless!!!!!)

For Sale

I think we're crazy. okay I KNOW we are crazy. In the last two weeks we have decided to put our house up for sale, with hopes to build a ranch home with better accessibility for Alex in the future. This move would  really reduce hubby's commute time to and from work so more time with the boys, and be with a school district with a great reputation. The area we are hoping for is in a quiet cul de sac of about 14 homes where we also learned from one of the neighbors already has a family with get this....twin boys roughly the same age as ours. Thats crazy. I hope its a sign we are doing the right thing.

The move is really bittersweet. We've been in our home 10 years and have built a lot of memories ofcourse in these years. Especially most recently in the last almost 16 months, well these months have been my favorite. Watching the boys grow and explore, from just bringing them home and having them cuddle and sleep together in our living room, stretching out together in the bassinet, all the way to now creeping across the floors, peering out windows, "talking" to each other across cribs, climbing first steps. oh these memories are in my heart forever.

I know we'll make new ones for sure, GREAT ones. And for us, we are lucky to have an opportunity to try and build a wonderful home for our family with big wide open spaces all on one floor, easier access into doorways in what already seems like a wonderful, close knit neighborhood. We were invited into one neighbors home and we were able to hear about all the other families who live there. Standing in that cul de sac, I could just SEE us there, it feels right. So we put down a deposit to hold the lot on condition of us selling our home in this not so great market.......and then......

the day after we were notified of Alex losing his insurance Oct. 1st which caught us completely by surprise and are working furiously to see what our options are. We have insurance through my husbands work ofcourse but pharmacy benefit alone is really poor and his medications and special formula alone are hundreds of dollars a month. Once we get his allergy testing done, we'll know better what our options are for trying to transition him to something else but what? oh well we've waited almost two months to get him into the allergist since he and his brother had broken out in hives with dairy. We were supposed to take both boys finally to get testing done but now we've had to cancel it because of Alex's surgery which if you follow us, you already know that also came on abruptly just a couple days ago. 

To say that I'm a little on edge is putting it very nicely. We've been working hard to do all the necessary things of decluttering our home, cleaning like mad, kicking ourselves for not doing some of this stuff long before now, and trying to get it looking "model ready" in the last week. We got photos pf the house taken while the boys were sleeping so it could stay that way for a minute, ha,ha. Life just feels a bit crazy right now. 

I'm overwhelmed at  the thought of keeping the house this "perfect" in every day life of two babes and two cats for an uncertain amount of time as well as getting two babes and two cats out of the house without leaving a train wreck behind when any one comes calling. I know a million of people have had to go through this and we will survive it too!!!

Wow, lately I've been feeling and sounding quite whiny and I apologize. I hate that feeling. We know things could always be and for others even, far, far worse and even when feeling whiny I never lose sight of how blessed we are. Alex is getting GREAT medical care from a huge team of doctors we have our trust in and feeling very grateful that we live in a city with such resources right at home. I promise I'll be feeling a lot less whiny after Monday (knock wood).

Mostly I am praying on Monday for Alex and his surgery to be what he needs to breathe easier, sleep and feel better and to have no complications. His surgery is scheduled for 9am and I strongly believe in the power of prayer and gratefully accept any and all on Alex's behalf for an uncomplicated surgery and recovery. It is considered minor I know but it never feels minor when its your child ofcourse. And I'm hoping that the benefits will be anything but.

thanks and with much love,

Holli & Mark

Monday Surgery

We consulted with ENT today and Alex will be having his tonsils and adenoids out on Monday. They were able to give us even more specific results from his sleep study which showed that he stops breathing 21 times an hour. 21 TIMES each hour. My heart sank. They didn't even have to tell me that this is considered severe sleep apnea. 

I am feeling quite emotional about having him undergo a surgery when we don't know for sure if it will "fix" his apnea but I've talked to all doctors involved and understand that there is no way they can determine how much is related to tonsils/adenoids and other structures versus possible tone issues. THey say his tonsils ARE enlarged but probably not enough by itself to make them want to take them out if it wasn't for the severe apnea. The ENT said they would be looking at his vocal cords, windpipe, etc while they are in there to ascertain if other factors more telling are involved. He said his sense is this surgery SHOULD make improvments in his apnea but obviously he can't guarantee it will "fix" it completley. I do understand that there are no guarantees for anything but I'm very sad about putting him through another surgery right now, especially because we still have his urology one in just a couple weeks (we have a call out to his surgeon for that but I'm told it should not affect his later surgery in any way). 

He will be in the PICU (pediatric intensive care unit) over night, possibly a second day as well depending on how things go. They say they would keep any baby this size and with his issues of apnea in the PICU so for us not to be alarmed. I am asking for any one to please send good thoughts and wishes for Alex. I am praying that maybe the doctors are just being overly cautious but maybe this could in fact help his apnea a great deal. Maybe this will help him turn the corner and when he can get truly restorative sleep, he can feel better, stay healthier, grow easier, and continue to soar!!!

Results

Just another quick update. We were shocked to have heard some preliminary results from Alex's sleep study the following day. His pulmonologist called to say the results determined that he has obstructive sleep apnea. He does fine until he gets into those really deep stages of sleep and then his sats drop. He keeps coming back up but they keep dropping and at one point dropped to the 70's. He does better with just a little bit of oxygen which is good but it doesn't take all the events entirely away as we know from his alarms at home every night. The good news is with his oxygen, he never lingers below the upper 80's/low 90's but now I understand that a lot of his waking at night is likely due to needing to catch that extra breath.

The next step is to have a consult with an ear, nose and throat specialist to determine if the obstruction is his tonsils or adenoids. I asked what the obstruction would be if it WASN'T those things, I couldn't think what else is there. Wrong question. We talked about since Alex has spina bifida and low muscle tone in areas, that this could be creating an issue with breathing during the deeper stages of sleep. His actual airway could be "floppy" or something like that. Well I won't go into the rest of the possibilities because that would just be getting way too ahead of ourselves. We'll do the ENT consult first and hoping its something relatively simple to treat or fix.

This was the article I found that gave some general information about this type of apnea in children.

We will also be meeting with the doctor from the sleep study to get all of the results. At this point we are thinking/hoping that his apnea is on the mild side but again we are just guessing because of what we see at home on the monitors and from what we can understand. The sleep study obviously has way more sophisticated equipment and you have no sense of all the data they are collecting.

Alex is such a trooper. He got more sleep than what we anticipated that night (we honestly didn't think he'd get much at all). Luckily he did sleep some but woke up A LOT and none too happy not to see his brother or his familiar surroundings every time he woke. He was however soooo good while getting all of those sensors and belts on which took over 30 minutes to get all hooked up and it was already past his bedtime. He was not as good keeping them on. (surprise, surprise). He managed to pull some of these off during the night (a couple of times) but he probably just wanted to give those ladies an excuse to keep coming in and visit the cute little boy again. He sure is a charmer!

Even when he comes home and we find him with his oxygen out of his nose AGAIN.

Somehow he managed to get part of the tape off and the other still stuck on his cheek

If you can see, the canula is hanging off to the right of his mouth. Not exactly where it needs to be.

close but not close enough. sigh.

and the look on his face: "why do you people keep bothering me?

 some people are trying to sleep you know."

yep he's a cutie even covered in baked beans

a cutie even when he thinks its fun to clap his hands as hard as possible

so that the juices from the baked beans go flying....every where.

Yes, it got much worse than this, just had to hide my camera soon after.

Ofcourse Alex couldn't have all the fun.

Nicholas has been doing "so big" everywhere

so this yummy lunch managed to double as a hair moisturizing treatment

(don't try this at home!)

This is what he does when he's all done or thinks he is anyway;

not dramatic or anything. 

Sleep study

Quick update:

Boys are doing great. Alex got through his pneumonia in record time from times past and we are so thankful. Two weeks after he got sick, he had already gotten off of the oxygen during the day!!!! We could have never guessed that as sick as he had sounded that first week but he is simply amazing so I don't know why we sit around acting surprised anymore.

He is still on oxygen at night and in fact goes in for his long awaited sleep study tomorrow and we are feeling a wee bit anxious. Daddy has generously offered to take him and "sleep" (ha,ha) overnight at the clinic with him while Mommy stays home with Nicholas. They only allow one parent to stay over at the clinic. From our fact sheet that they sent us, he will be hooked up to 17 different sensors to his head and face alone to determine when he is sleeping and what stage of sleep he is in, a belt around his tummy and chest to watch his breathing patterns, two sensors on his chest to monitor heart rate and rhythm, a canula in his nose and sensor on his upper lip to measure breathing patterns. I'm wondering with all of this AND being in a new place over night, are they really going to be able to monitor his sleeping or just his fitful cries as he says "get these off of me and take me home, take me home." We are told that it can take several weeks before the specialist looks at all the data and we are given the results. We are hopeful that Alex will be a very boring study and that we can just check this one off the list without further ado!

Promise to be back soon with pics!!