A moment

We just got back from our consultation/2nd opinion with orthopedics. REALLY liked this doctor, great bed side manner and very knowledgable. He had obviously taken the time to go through Alex's extensive NICU history before our appt and after talking to us had us get some scans of his hips and spine to review. the most concerning was the scoliosis. He showed us the scan and even to our untrained eye, it looked way wrong. We vaguely remember hearing this after he was born in the NICU about a deformity spotted on his spine. Honestly at the time that was hardly making the top 10 list of concerns so we just filed it away and thats been that. No one has mentioned it again and it went into the background.

The ortho said its very high up towards the neck and there is an extra verterbrea jammed in there, and there are several vertebrae all on the top of his spine that are completely misshapen, almost hexagonal looking, not stacked one on top of the other. Right now its not causing any known issues but has the potential to cause some severe issues as he grows. I'm not sure I understand it but the way it is compressing on the rest of the spine, if it continues to grow that way, could compress on one of his lungs. He wants to watch it through scans every 3-4 months for now and says its most likely to cause an issue during growth spurts (Infancy being one of them ofcourse). He said surgery is the only thing to correct it and where its located, it would be pretty involved. Obviously I'm just going to pray that this will just be a non issue as he grows and we can escape any of these issues and forget all about it again but I'm feeling pretty scared about it. Why do I feel like we get rid of one stressor (oxygen, potential heart issues) just to be traded with another? There ofcourse is nothing we can do with this information but worry and wait (which I feel like we've been trained in for many, many months). God must have forgotten that by nature, we do this pretty darn well,  we did this BEFORE our kids though God only knows what was worthy of our worry then. I certainly can't think of it now, oh except the will we ever have our family and all the things we had to do to even get here. Well anyway, maybe its time to learn another skill now??? Yes, I'm sorry I'm in that kind of mood....should have been a warning on the top I suppose.

On a lesser concerning note, we also walked in there pretty pumped up about how much "extra" movement he's been showing us when we rub his feet, etc. we always told ourselves that we wouldn't get our hopes up about him walking and that it didn't matter and certainly in the grand scheme of things, its last thing on the list. but I'd be lying if I said I didn't want this for my son. Anyway, he was really gentle with us but largely said the movement that we are seeing is likely more "reflex" movement, not muscle movement which is what he needs to walk, even stand. He reassured us its still too early to predict but did tell us several times he needs to be able to flex his knees "strongly" to really weight bear and stand for any length of time before we even worry about the walking part. He didn't say this but from his testing with Alex today, he didn't look very confident that this would happen for him. 


He also told us that he does have a dislocated hip, shorter femur bone making his left leg obviously shorter. (we have suspected that his hip was dislocated but no one before was able to clearly tell us this). We asked about treatment and he said they do surgery for this sometimes because its not 100% effective. They wait to see how mobile the child can really be before pursuing surgery. He said it will not impact his ability to sit up, crawl, stand, etc. If he was able to walk well, it would be something we could try but since its a surgery, obviously we wouldn't want to put him through something that wasn't going to change anything. again I felt deflated. He's really thinking that Alex won't walk.


 I wanted to shake him and say but I remember you from the NICU. I remember you evaluating my son there and you turning to tell me that you thought he would be functioning more like an L4 and then explaining clearly when I was obviously confused what the heck L4 meant and YOU saying "well Mrs. Rissberger, most L4 children will walk." Why would you SAY that and now feels like your taking it back? Why would you put that in my head??? and all this time I thought it didn't matter but subconsciously I always had that in my head. But I didn't say a word, I just teared up because I just couldn't hold it in.

Its not the most important thing, I  mean that when I say that and how I've always said that. But that doesn't stop you from wanting absolutely everything for your child. somehow we've built up all these little "tests" that we've done ourselves in getting Alex to move his feet/legs and without realizing it, just KNEW he would be able to stand/walk. And being reminded that its very possible he won't, well its not the end of the world certainly, but you feel the air go out of your tires a bit and you convince yourself it doesn't matter, it SHOULDN'T matter.....

The doctor said several times what a beautiful, happy, healthy and thriving baby we have. and oh my gosh, I will NEVER stop being grateful for him, proud OF him, LOVE him. I will NEVER forget what a blessing he is to us, EVER. He and his brother are our world!!!! But that doesn't take away my dreams for him, the way I want his life to be a bit easier then anticipated. somehow I have in my heart that standing, if not walking will pave that way for him and I can't help it, I'm human. I may need a minute just to prepare myself again. You can so easily forget when they are babies, lighting up your life by their smiles, laughter, babbling, you can forget for awhile that life may get challenging....until you have one of these appts that whip you right back to reality for a moment. oh right, he has SB, I almost forgot. I don't want more surgeries for my son, I don't want to think about VP shunts, bladder and bowel issues, spinal issues, or for him to always HAVE to be in a wheelchair.


 I know that none of us escape this life without being challenged in some way, but you hope that your children can just simply BE children for awhile without having to struggle right away. I feel like my children have had to struggle SO much right from the beginning and I want them to be free from that. They deserve that. Why can't you put those challenges to ME? Give them to me and take them from my son, even for awhile? Let him experience the joy of running around with his brother, his friends, carefree, innocent? Not to have to know so many places in a hospital, tests, procedures, worries. and then the walking, oh I know, I know and then what? take it away and give all of this back to him when? when would it be easier? and about the mobility stuff,  just because someone can use their legs doesn't make them automatically happier, right? look how many people have full use of their legs and are quite honestly walking around miserable. I know that if God has kept this Gift of walking from my son, he has surely given him many others in their place. I know that, I do. My son IS the gift, to me, to everyone around him, he is!!!!

Oh boy, I know this sounds terribly depressing and pity party making and I"m sorry. I am usually strong and positive. My boys need that from me, my family needs that from me. I will BE that. I think though every one needs a moment some times just to allow yourself to not HAVE to be the strong one. For a moment. For a moment to be sad, angry, whatever, before pulling yourself back together. so this was one of those moments for me and I thank you for allowing me to have it.

My sons are BLESSINGS. and Alex has defied every expert from even before he was born and in my eyes he will always do that. Without being unrealistic, I will grow that hope again in my heart. Whatever he wants to do, whatever he puts his mind to, whatever he is MEANT to do, he WILL do. I've always said and mean when I say it doesn't matter in the long run if he ever walks a step or not, I just want him to be happy. and as his mom, I need to be that model for him, I need to show him it doesn't matter, he can be happy no matter what his legs can do or not do. Or just maybe he is the one teaching me how because as I write this, he turns around in his exersaucer and blows me raspberries!!! 

More favorite faces!

Just couldn't resist sharing these. 

Mirror Mirror

Nicholas trying out some faces.....

his innocent face

I think this is supposed to be his serious face,

yet I can't help but laugh..

his happy face

his silly face!

and I love this one "mom, another photo, really? can't you see I'm busy?"

and here are some sweet ones of Alex and his hands, 

which are never far from his mouth these days

mmm, yummy

uh, I'm sure I can fit both of these in here if I just try hard enough

NICU follow up

We had a NICU follow up for Nicholas last week. Anyone who has been in the NICU, especially for severe prematurity is given a follow up appointment to be sure they are on course physically and developmentally. If there are concerns, they can be caught early and appropriate intervention can begin. (Alex actually did not need to go to this one because he is seen by the specialty clinic so he got to stay at home for a change and received some serious 1:1 spoiling with Nana which he LOVED).

The appointment consisted of Nicholas being seen by a neurologist, developmental psychologist, NICU physician and early intervention evaluator. Everything went well for the most part but the timing and sheer length of the appointment were challenging. Nicholas had woken up at 6am this day and the appointment started at 9am. I'm sure you can do the math but Nicholas was exhausted before even the first person came in. I hoped he would take a nap on the drive there, but that was evidently not in his plans. We were able to answer a lot of questions they had about how well he was eating, sleeping, physical and verbal milestones. Ofcourse there were some things that they needed to test and see for themselves. Well long story short he was hardly in the mood to do exactly what they wanted him to do and by the time the neurologist got there, was quite determined to nap and would not be woken up. The neurologist even tapped on several points to check reflexes and Nicholas largely slept through even this.

The developmental psychologist was able to do some testing before Nicholas was lights out. He said he wanted to see him have the ability to do tasks typical of close to 7 months adjusted, which is where he should be based on his expected due date. He thinks Nicholas is measuring just a little bit behind that but he said not unusual due to the length and severity of his NICU stay. He is confident that with a bit more time he will catch up. He also asked if Nicholas smiles or laughs. So you know he was definitely not getting the best of Nicholas. We had to laugh at this one. We assured him when Nicholas was actually "awake", thats ALL he does these days. He is such a happy baby now. It usually takes very little effort to get these from him, and in fact later shared many smiles and giggles with the NICU doctors who came in!

The neurologist seemed satisfied with the information we provided but obviously didn't get to see enough for himself. He wants to see him again in six months just to be sure there are no concerns.

The BEST part of the appointment was when the NICU doctors walked in. We recognized them right away and them us. It was the doctors who took care of both boys in their first week of life and multiple other times during their almost three and a half month hospital stay. I know how many babies they take care of so it was especially touching that they had tears in their eyes as they saw Nicholas and hugged us. They saw us on the "roster" some time before and made sure to bring their camera so they could take back photos to the rest of our NICU team. We were so blessed to have many doctors that made us feel comfortable, took a lot of time with us and our boys and felt we could put our whole trust in, and these two were a couple of our absolute favorites. Maybe its because they were part of it from the very beginning. Actually it was one of these doctors who before they took Alex in for his spinal closure had to go over every possible complication and ofcourse it was all very grim. Mark ended up getting so upset that he yelled at her and asked her to leave. Ofcourse these were not our best times, and ofcourse she understood that when we apologized afterwards but oh seeing them this time felt like coming full circle. (we learned awhile later that the doctors honestly did not expect Alex to survive the surgery due to his severe prematurity and obviously they were trying to prepare us). They ofcourse were disappointed we didn't bring Alex with us and we told them about him, shared photos. Alex's nickname in the NICU after a few short weeks of defying all the odds was "rockstar" by many of his caretakers, and he still us in our eyes.

Mark and I thanked them over and over again for all their care of our boys AND their parents at a very difficult time and left the appointment feeling as grateful as ever for how far the boys have come! We promised that when the cold/flu season was over, we'd definitely bring the boys in for a visit to say hello!

and here are our cuties now.......

Background

Its hard to believe that it was a year ago this month that our world turned upside down. At least thats how it felt at the time. The morning of February 19th 2009 the only feelings we had walking into that ultrasound were feelings of excitement. We were going to hopefully find out the gender of our babies. It didn't matter to us either way but we couldn't wait to start planning the nursery and picking out names. The only fear we had at that time then was that the babies wouldn't cooperate and we'd have to wait possibly another whole week to know. We were 18 weeks. If you know us or follow ths blog, you know what happened but I feel a need to share this story as its been on my mind a lot lately.

It seems a lifetime ago in many ways now but I can instantly recall the emotions I felt like it was just yesterday. Shock, fear--a LOT of fear, sadness, worry. Not at all the way we expected to feel at learning we were going to be having two boys. We couldn't enjoy that then. We were instead dropped into what felt like a bottomless pit with words swirling around us like "neural tube defect", "open spine", "paralysis", "fluid on the brain", "poor quality of life" and much much more that I am intentionally blocking out. Thats how we were introduced to the new world of spina bifida and we were terrified.

Mark and I took the rest of the day off from work, and the next day too. We went home alternating between feeling numb and feeling like someone just took the floor out from underneath us and we could see no place to land. It was hard to breathe. We clung to each other and our closest family and friends. Over the next number of weeks we cried, tried to forget, got angry, tried bartering with God, and then finally accepted and prayed like crazy for strength, guidance, and the best outcome for our sons. All the while we just fell more in love with our boys and a new fierce feeling of wanting to protect them.

I knew nothing of Spina bifida and soon immersed myself into everything I could find out about it. I used to think this diagnosis would define our lives, would only take away things from Alex, take away things from all of us. I know see how wrong I was! Don't get me wrong, I'm human. I still worry....a lot sometimes. I wonder what kind of mobility he'll have, how hard he'll have to work. Will he be resentful that he has to work so hard at every little movement while his brother can do these things so effortlessly? Will he feel left out when able bodies peers are running around? Will this shunt hold up or will he need surgical revisions? Will his kidney reflux come back? Will we have to learn how to cathertize him? These are just some of the things that we will have to get through in time. Even with these worries though I have to say for the most part spina bifida really is much more in the background of our lives, not the forefront. (honestly the severe prematurity issues were the most terrifying and to this day we still feel like we are fighting and overcoming the remnants of that).

Okay, sorry back to spina bifida. Alex is ohhhhhhhhh so much MORE than spina bifida. Alex is amazing. He has been a fighter from the very beginning. He has defied the odds of severe prematurity, he has come through four surgeries in his nine months of life, the first one ---the major one at just a pound and a half when the doctors really didn't think he would make it through.

He is such a fighter yet he has the sweetest disposition, he has this light up his whole face (and my heart) smile, the cutest giggle and this piercing see all the way into your soul stare. I love watching him try to shove his whole hand in his mouth all the while chattering away. I love the look on his face when he's rolled over and gotten out of "tummy time". I love how he always reaches out to hold his brothers hand.

I love how he reaches up to touch his daddys face and you think he's being so loving, until he goes in for the swipe of the glasses.

I love just recently how he sticks out his tongue just a little bit and smiles at the same time when he's happy.

In truth, even though I will never like it, many more things have been given to us than taken away because of spina bifida. I have such an appreciation of every little milestone, and not even milestones that others would think of. I notice things that we likely would have taken for granted if we'd not been placed on this road (a wiggle of a toe, rolling to the side, grabbing a toy, pushing himself up on his arms), just some of the things that we really weren't sure if he'd be able to do.

I have a much stronger faith, and a feeling of closeness with special family and friends, whether we like it or not hard times can draw people together. I've also found a whole new network of new friends and support. People I would have likely never met had it not been for this journey, and now are people I share my deepest worries with and celebrate every high of their family's as well as our own. I have not yet met any local families affected by SB so I depend on my on line family all the more. We are quite a collection of people and the internet has been the lifeline that ties us together. It has been because of SB that we have met but I feel blessed to know them for much more than that.

Finally I have to say that I feel like I'm doing a lot of growing, a lot of stretching as a person. I'm sure that I would have done some of this as a new mom anyway but spina bifida, as well as their severe prematurity has challenged me quite a bit more. Its not been easy, its not been comfortable but I think I"m going to be a stronger person because of it, I might even hesitate to say a better person. Either way just being Alex and Nicholas's mom, I'm the happiest I've ever been, even with spina bifida in the background!

I'm very late in doing this, since spina bifida awareness is technically in October. But better late than never, right? Besides bringing awareness and education should be more than just one month out of the year. So here is some background information:

The following has been taken from the spina bifida association:

What is Spina Bifida?


Spina bifida is the most frequently occurring permanently disabling birth defect and the most common Neural Tube Defect. It affects approximately one out of every 1,000 newborns in the United States.

Spina bifida results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.

Spina Bifida means cleft spine, which is an incomplete closure in the spinal column. In general, the three types of spina bifida (from mild to severe) are:


1. Spina Bifida Occulta: There is an opening in one or more of the vertebrae (bones) of the spinal column without apparent damage to the spinal cord.

2. Meningocele: The meninges, or protective covering around the spinal cord, has pushed out through the opening in the vertebrae in a sac called the "meningocele." However, the spinal cord remains intact. This form can be repaired with little or no damage to the nerve pathways.

3. Myelomeningocele: This is the type that Alex has. This is the most severe form of spina bifida, in which a portion of the spinal cord itself protrudes through the back. In some cases, sacs are covered with skin; in others, tissue and nerves are exposed. Generally, people use the terms "spina bifida" and "myelomeningocele" interchangeably.

INCIDENCE

Approximately 40% of all Americans may have spina bifida occulta, but because most experience little or no symptoms, very few of them ever know that they have it. The other two types of spina bifida, meningocele and myelomeningocele, are known collectively as "spina bifida manifesta," and occur in approximately one out of every thousand births. Of these infants born with "spina bifida manifesta," about 4% have the meningocele form, while about 96% have myelomeningocele form.

CHARACTERISTICS

The effects of myelomeningocele, the most serious form of spina bifida, may include muscle weakness or paralysis below the area of the spine where the incomplete closure (or cleft) occurs, loss of sensation below the cleft, and loss of bowel and bladder control. In addition, fluid may build up and cause an accumulation of fluid in the brain (a condition known as hydrocephalus). A large percentage (70%-90%) of children born with myelomeningocele have hydrocephalus. Hydrocephalus is controlled by a surgical procedure called "shunting," which relieves the fluid buildup in the brain. If a drain (shunt) is not implanted, the pressure buildup can cause brain damage, seizures or blindness. Hydrocephalus may occur without spina bifida, but the two conditions often occur together.

EDUCATIONAL IMPLICATIONS

Although spina bifida is relatively common, until recently most children born with a myelomeningocele died shortly after birth. Now that surgery to drain spinal fluid and protect children against hydrocephalus can be performed in the first 48 hours of life, children with myelomeningocele are much more likely to live. Quite often, however, they must have a series of operations throughout their childhood. School programs should be flexible to accommodate these special needs.

Many children with myelomeningocele need training to learn to manage their bowel and bladder functions. Some require catheterization, or the insertion of a tube to permit passage of urine.

In some cases, children with spina bifida who also have a history of hydrocephalus experience learning problems. They may have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school.

Mainstreaming, or successful integration of a child with spina bifida into a school attended by nondisabled young people, sometimes requires changes in school equipment or the curriculum. Although student placement should be in the least restrictive environment the day-to-day school pattern also should be as "normal" as possible. In adapting the school setting for the child with spina bifida, architectural factors should be considered. Section 504 of the Rehabilitation Act of 1973 requires that programs receiving federal funds make their facilities accessible. This can occur through structural changes (for example, adding elevators or ramps) or through schedule or location changes (for example, offering a course on the ground floor).

Children with myelomeningocele need to learn mobility skills, and often require the aid of crutches, braces, or wheelchairs. It is important that all members of the school team and the parents understand the child's physical capabilities and limitations. Physical disabilities like spina bifida can have profound effects on a child's emotional and social development. To promote personal growth, families and teachers should encourage children, within the limits of safety and health, to be independent and to participate in activities with their non-disabled classmates.

Source: NICHCY www.nichcy.org

Still smiling

We've ended one of the busiest weeks we've had with appointments in a long while, but we made it through with the help of our family and friends (a big thank you to Nana, Grandma Karen and Grandpa Fred and Vickie for all your help this week)! For the appointments that were just for Alex, it was really nice not to have to drag Nicholas into the winter cold and snow unnecessarily! He especially appreciated getting to play at home with some serious one on one spoiling :)


The best part is after all these appointments: we are still smiling.


We crammed a lot into this week so I will try to stick to just the highlights: GI says they are satisfied with the boys growth and after discussing their intake, they want to see them doing a bit more solid foods now and gave us some updated guidelines about what they hope for formula intake. They will continue to monitor the boys growth to make sure it stays on par with these changes. With our request, they also changed one of Alex's reflux medications to what his brother is on which seems to be working well and its MUCH easier now to get him to take his medicine (it smells much sweeter so he probably thinks its candy, ha,ha). 


We also saw the plastic surgeon who is monitoring Alex's helmet therapy. He is happy with how things are going and says to anticipate a second "course" of treatment for the best results, which means he will likely stay in his helmet til June or so. He also gave us some further instructions about the care of his back scar and that when Alex is older if he wants, they can revise the scar. (They first operated on him when he was less than 48 hours old and when he weighed about a pound and a half so there wasn't much skin to work with and they had to be creative--meaning its not a very smooth or attractive looking scar.) We could care less, he's absolutely perfect in our eyes but it was nice to know that when Alex is older, if HE'S not comfortable with it, he could be the one to help make the decision if he wanted to try and improve it. Personally I think its a pretty amazing battle scar and I hope he's proud of everything he has come through (his parents certainly are!). 


The BEST hopeful news of the bunch: Alex saw cardiology today and had a scan and some other tests done. The inflammation in his heart is still there but does look better than the scan three months ago.  they also took him off of his oxygen the whole time we were there and watched his oxygen saturations and they were great. They say that his heart might take months or even a year or more to completely recover if it was just directly related to his lung disease (which is what they've always suspected) so they are not surprised by the scan. The big question will be if his lungs have grown enough "good" lung tissue to do the job it needs to, without putting any extra stress on the heart. The only way to know this is to take him off the oxygen and keep an eye on his saturations and scan again in a couple months. 


Sooooo after a bunch of tests and checks, we got the go ahead to try him off the oxygen!!!! we are currently in the two week trial of NO extra oxygen!!!!! We will periodically check his sats throughout the day and also at night during the next two weeks. As long as his sats stay above 95 during the next two weeks, then he can stay off of it!!!! Obviously if he can not maintain this, he will go back on the oxygen immediately. The cardiologist reminds us that it usually takes up to two years before a baby recovers completely from chronic lung disease due to severe prematurity but we are all hopeful that he has enough lung capacity to not require continous oxygen anymore. Time will tell. He will have another heart scan in 6 months either way to make sure his heart continues to improve as expected. Please say a prayer for him.


I swear Alex is ALREADY happy without the plastic up his nose and mommy and daddy are hopeful that we won't have to constantly keep an eye on how far the oxygen cord stretches, or if we are tripping on it, sitting on it or if its within easy reach of Alex OR his brother :) It feels like a little bit of freedom. Already Alex has seen parts of our house for the FIRST time (the oxygen tubing could only stretch soooo far).


In future news Nicholas will have his follow up NICU evaluation by the medical and developmental specialists (we sure think they will be very happy with how well he is doing!) and we will have a second opinion/consultation for Alex with orthopedics. Both boys will also have their 9 month pediatrician appt. Yes, 9 months old now---can you believe it?

Here's some recent pics of our handsome boys!!!!

It sure is nice to see his "naked" face!!!!

just hanging out