TELL THE WORLD

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Not sure if this link will work or not, but here's a coming home slide show!!!! Let the rest if our life begin!!

Blogging is apparently harder than I thought

So a few of the posts are posting out of order...my bad. I guess I forgot to hit publish on some of them as I was finished writing them. So you will have to figure out the order like a puzzle....enjoy!!

Happy heart

Today.....happiness

Our first family photo ( sorry, future Thomas, that we took it from the wrong side and your butt is front and center in our first family photo!)

Shunt happens

(Note:this actually happened Sunday, July 27) So we are officially shunted, by we I mean he. We are free of the EVD (external shunt) which is awesome. I hated that thing (of course I am thankful for its purpose in keeping him alive and relieving pressure from his brain, but I hated it). We had to always make sure his head was level with the pole and stay on constant watch to ensure he didn't pull it out. It was an invitation to infection and most of all it drained his CSF (cerebral spinal fluid) to a bag that was just sitting in front of us. There is something unnerving about seeing the fluid come out of his body. But now it's gone!!! 

Baby Thomas has an internal shunt. It is definitely a trade-off. While he has no tube coming out of his head, he does now have noticeable tubing under his skin. 

It is a medium flow VP shunt (1.5 Delta valve). This brings it's own scary story with it. They have a failure rate of 40-60% and the average number of shunt revisions a person needs is 6.75. So we will have more than one shunt surgery, you just hope it's later in life when he can tolerate it a little better and when he can help identify the symptoms by telling us he has pain. Right now if it fails, we have to recognize the symptoms, which are not specific: irritability, sleepiness, vomiting, fever, or none of those or all of those or different ones. Well at least those symptoms aren't things a normal newborn would do (are you picking up on my sarcasm, because I am laying it on pretty thick!). The neurosurgeon also added that parents aren't very good at recognizing the shunt failure, half the time they bring them in and it is nothing. Well of course they do, you just listed all characteristics of a typical newborn! But as I mentioned in a previous post, this is worth it. I would rather be home and using my amazing detective skills to figure out if he is fussy because of his shunt or because it is the second Tuesday of the month. 

So the surgery went well, they said he did great and he basically slept all day yesterday since he was under general anesthesia for the procedure. Last night was our first real scare. We had some imaging done to double check the placement of the shunt and his ventricle size, the radiologist read the films and was concerned that his vents (that's what the cool kids call ventricles around here) had actually increased. This is the opposite of what the shunt is supposed to do so everyone was concerned. They had to track down the doc to see what he thought and on a Saturday night at 9:30 that is bit the quickest thing. So we were left waiting for a bit, thinking his shunt was failing and they would need to do a revision ASAP. Finally the doc called back and said he wasn't concerned. Everything was fine, Thomas was eating and had stirred a bit through the day, so he had no worries. Today when we came in, I got to speak to the surgeon who assisted in Thomas's surgery band he explained that they picked a valve that had a pressure a little higher than what the EVD was set at so they could intentionally plump up those vents (there I am being cool again) to keep his sutures in his skull (here is a diagram explaining what the sutures in the skull are, I thought sutures meant stitches so I had to ask http://www.stanfordchildrens.org/en/topic/default?id=anatomy-of-the-newborn-skull-90-P01840) from overlapping and fusing together. If the vents are too small, the sutures will sit on top of each other, so by plumping his vents with increased pressure it basically holds everything in place. It makes sense, would have enjoyed it if someone had explained that to us last night, or had even charted it so the nurses knew, but that's ok, we know now and there is nothing to worry about. 

Our biggest hurdle to get over right now is infection. Since he had an EVD, his chance of getting an infection is pretty high. And now that he has hardware inside his body, any little bugs that get in there will go right for the shunt and infect it, which will lead us to more surgery most likely. So we are thinking clean thoughts and trying to be as clean as possible around him. He can't be out in public for a while and not around any kids for a few weeks. We are crossing our fingers for no infection. 

This morning at rounds it was brought into the conversation about going home soon, I tried to be cool and surpass my initial reaction to championship fist and chest bump the neonatologist, mainly because it would probably hurt my stitches. We have to do 3 days post surgery antibiotics and then a circumcision the there is nothing holding us here if all else still looks good! So my realistic expectation is Thursday, which is awesome!!! I love having the nurses around all the time to teach us and to ask questions to, but I miss my big boys and my bed and real food and above all I can't wait to be a complete family of 5!!!!!

Home is in sight

We get to go home tomorrow!!!!!! Just a few little details to cross off the list and we will pack up and leave the hospital WITH Thomas!!! He will get to see the sunshine for the first time in his life and ride in his car seat and see his house and his room!!! We are slightly excited!

Update

Has actually been a pretty slow day or two. All lines are out (no IV's or PICC's or anything going into him). He is in a big boy crib instead of a warmer and has been holding his own body temperature just fine. All dressings over his surgery sites are off. He is breastfeeding fine and even back to wetting his own diapers. We are only getting a few mL's when we cath, so maybe we can decrease the frequency of cathing (right now it's 8x a day). We are waiting to get circumcised still, which should make cathing super interesting (sarcasm font). He is only on vitamin supplements, no meds! All wounds look great and are healing just fine. He is gaining weight slowly. Head ultrasound didn't show anything of concern with his vents. So really we are just waiting on the discharge list. There are quite a few things to check off before we go and to get all the moving parts going in the right direction takes time, but there is definitely light at the end of the tunnel and that light is shining on our house! It's pretty miraculous to me that just a few days ago, his head was cut open and hardware was put in his brain and now we are already talking about going home!

Thomas's Village

Sitting with my boy again and thinking about going home soon (hopefully only a few more days). 

As you can see he is thrilled about the idea!!

After my last post about how the NICU isn't an awesome place to be, I felt like I left something out. The nurses! While I don't like this place, the nurses that we have had have been extraordinary. They have turned what could have been a very dark, scary experience into one that was handle-able (easy, grammar police - poetic license). We will leave here with new members of our village and people that I will never forget. They are a part of Thomas's story and are like his own personal super heroes. It will be strange to be home and not have someone constantly there to ask a question to or advice from. They have had to deal with an endless line of questioning from me and have taught us to cath and really just taught us a lot. I will miss them all dearly. Luckily I have the NICU number memorized...

NICU's are tough

It's like an alternate universe in here. There are no windows and no real concept of time. It is both a time warp and time freezer. Some days I can't believe how fast they go, while others don't seem to end. There are constant alarms and beeps and cries and coos. Nurses and doctors whispering. Dazed parents sitting beside cribs looking lost. When I hear 'Response Team' called over the loud speaker and everyone quickly shuffle to the call (that is the call for resuscitation/emergency with a baby) my heart is simultaneously scared and sad for the baby and family, but thankful it's not Baby Thomas. When I see what battles some of these tiny little beings have to go through, I feel thankful that Thomas is doing so well and all his diagnosis isn't grim, which then makes me feel guilty or like we are imposters in this little world since we will get to go home and our little man is doing so so well. When I used to think about the NICU or even just about kids in the hospital, I would often wonder why parents aren't always right there all the time. How can they leave? How can they not be more involved? After having lived this life now for even a short period of time, I get it. It's hard being here. It's hard seeing your child hooked up to machines and struggling to get comfortable when there is nothing you can do. It is hard to feel like his mom sometimes because I can't hold him, I can't cuddle with him or dress him. Sometimes I feel like I have to ask permission to change his diaper. It is our job as parents to comfort and protect, when we are powerless to do those things it's hard to be there;  when you feel like there is a barrier between you and your baby it sucks the life out of you each day. So I get it. And really this is just another lesson that Thomas is already teaching me. Don't judge other people, especially how they choose to parent. You don't know what they are going through or how hard something might be for them. It is so easy to look at other parents and say 'I would never do that' or 'how can they be like that'. There is no right and wrong way to be a parent as long as you are doing what you are doing out of love. So I vow to not be as quick to judge those that don't parent the same way as we do, instead I will offer them an understanding smile that hopefully communicates, 'I get it and I see you doing what you need to do, both for you and your kid and you aren't alone'. 

Through the surgery

Thomas made it through the surgery and did great. He is amazing. Sleeping off the anesthesia now and hopefully will wake to feed this afternoon. Will update more specifics on the shunt later. Thanks for all the thoughts and prayers. 

Worth it

As I sit here with our Baby Thomas in my lap, I can't help but have my mind wander to the day when we are all home together. It will be such a great day. Right now all the things that I was so afraid of, like cathing and shunts and wheelchairs and leg braces, seem completely worth it if it means we get to have him home and be a complete family. I will gladly cath him as often as we need if that means he gets to play animals with John. I will learn everything there is to learn and become an expert on shunt malfunctions and infections if it means he can throw a ball with David. We will become wheelchair builders if it means he can sleep in his own bed. None of this seems scary or impossible when it means he gets to be home. Will I have this state of mind when I have to cath him and he is fussy and kicking and the other two boys are fighting and yelling in the background, I am going to go out on a limb and say no. And that's ok, I forgive future me for when I am frustrated and will hate spina bifida and get flustered because it is going to be hard, but it is going to be worth it. 

Last Day of the EVD!

Today is the last day we will have an external shunt. I am pretty pumped about this. Any day where we have less tubes that we are relying on, is a day closer to coming home. He will have his shunt surgery tomorrow morning, which I am slightly fearful of, but we will worry about that another time, right now I am thankful that a tube is coming out and hopefully our last surgery will be done by this time tomorrow. The shunt surgery is the most common surgery the neurosurgeons do here, they are very good at 

it and it seems pretty routine, so I am somewhat comfortable with the actual procedure (as comfortable as you can be with brain surgery on your one week old son, I guess). Here are some pictures of the EVD before we say goodbye to it...

So keep Baby Thomas in your thoughts tomorrow morning as we take the next big step in our journey. 

Go Go Thomas

We are all up in Thomas the Tank Engine sayings in here and I think it's fitting because this little guy is pretty awesome, like the little engine that could. He is so laid back. I have only seen him fussy once or twice in his first week of life and he has had to endure so much already. He just kind of keeps going and rolls with the punches. We had our VCUG test yesterday to test for kidney reflux and to see how well he can empty his bladder. The great news is no reflux right now. He can only empty his bladder halfway so we started straight cathing him yesterday, 4 times a day. Unfortunately, there is more coming his way. Today we have a head ultrasound and we are placing (do you like I how say 'we' when it has nothing to do with me...I am just piggybacking on his awesomeness!) a PICC line for him to get his antibiotics through to help ward off infection from his upcoming shunt surgery. Tomorrow we have bloodwork to do and either an MRI or a CT scan, then on Saturday we have shunt surgery. My instinct makes me hate all this invasive medical stuff and all the tubes and wires coming off of him and machines constantly monitoring him and basically making a barrier between him and I, but yesterday as I was watching him and seeing the fluid drain from his brain through his external shunt and hating the noise of the machines and beeps in that room, it occurred to me that all of this is saving his life. If he had been born at another time and place it is likely he could not have made it. Without a shunt in his brain, all that fluid would be doing some serious and probably fatal damage to his brain. I wouldn't pick to have him hooked up to all of this and go through any of this, but if it weren't for 'all of this' we wouldn't have him and we definitely would never get to bring him home. Yes, I said home....one day he will get to come home. Probably one day soon, and it's because of all these wires and machines and inventions. So today I am going to appreciate the life giving wires and tubes and the music of the machines and beeps. 

Another day

Not a lot to report today. He didn't eat well last night, he was spitting up his bottle, which was slightly concerning since that can be a symptom of his Chiari Malformation being more serious. When we made it there this morning, we had unfortunately missed rounds and weren't able to ask the doctors about the spitting up and if it was a major concern. When we did see him, though, his dressing was off of his incision so we got to see it for the first time. I thought it looked great and much cleaner than I expected. Not a lot of bruising and not much redness. 

When it came time for his afternoon feeding, he took 8mL for us and then just fell asleep, but the next feeding he decided it was time and took 15mL and then for the one after that took 20mL in the blink of an eye. So it was great to see him eating and it was a little relief to not see any more spitting up. A Chiari that is symptomatic is rare, but when it is present, can bring a whole list of issues, so I was really hoping that a symptomatic Chiari was not going to be the issue of the spitting up.  Here's Mr. Thomas wide awake and eating today.

I forgot that when you have a newborn how much they change from day to day. We can already see his little personality coming through. He doesn't like to be on his belly...at ALL! When he is on his belly he tries to turn his head and roll over, but he isn't quite strong enough yet, so he ends up just burying his face in the pillow. He can't be on his back yet, due to his incision, and he can't be on his left side due to the external shunt, so he gets two positions - his belly or his right side. We switch between those two positions each 3 hours. When it was time to be on his belly today he just fussed and fidgeted and kept pulling at his wires and burying his face, until he finally got what he wanted and we gave in and moved him back to his side and then he immediately fell asleep...lesson learned, Thomas will communicate what he wants and probably get it! Which means that we are all in trouble!!

Good days

Today was a good day. That is not to say that yesterday wasn't or the even the day before, but today was a good day! I know that there will be bad days, even shitty days, along this journey. There will be days that are dark and confusing and full of questions and whys that can't be answered, so in those times I hope to be able to look back and find the good days too. To know that bad days don't last forever and the good days will come again. Hopefully this blog will help my memory in those times, so remind me to catch and write about the good ones! 

Today we went to see Thomas early and he was still soundly sleeping, mainly feeling the effects of the anesthesia still. The doctors came to do rounds and said that he was looking good and we could try to feed him and hold him today....good stuff! I got to sit in a chair and pile pillows and blankets on my lap to keep him high enough to stay in line with his EVD level. Then he laid on his belly in my lap. I know that this doesn't seem like much, but it was awesome. I could just sit and have my hands touching him so he knew I was there and there was no plastic barrier between us. I could feel his heat and it just felt nice to be closer to him...good stuff!

After I got to hold him, my milk came in so now I am an official milk factory and can start really stocking up for him...good stuff! Then we had all of his aunt and uncles come visit...that's right ALL of them.....very good stuff! It was such a jolt of love to have them all here. It definitely meant so much to me just to have them here, but they went above and beyond and decorated our corner of the NICU. It made my heart soar to see everything and know that Thomas is now literally surrounded by family and love even when we aren't standing there....awesome stuff!!

Thomas' little corner of the world is beautiful and filled with love!! He also started trying to eat today. Up to this point he has only had sugar water through an IV, but we got the go ahead to try some of my milk. So we propped him up on his side and gave him some milk, which he gobbled down...excellent stuff!! 

Like I said, it was such a good day. Please remind me to read this on a bad day!!

Out of surgery

His repair surgery is finished!! They were able to close the opening without using any skin grafts. He had plenty of muscle and skin to cover. The repair is horizontal, so it's like a little smiley face on his back. The Dr. said everything went well, unfortunately there was some meconium in the lesion which isn't something they liked to see, but they did what they could to flush it out and clean it up carefully. His external shunt is in place and they had to shave some of his long brown hair on his head to place it, but they saved the hair for us (I have no idea what to do with that little tuft of hair, but it was thoughtful). We might be able to hold him tomorrow on a pillow and hopefully we can start to feed him soon.  It is a relief to have that part done, now onward to the next challenge!

Surgery tonight

Thomas is on-call for surgery tonight, probably after 6:00. I was able to get a pass and go see him this morning. He is such a trooper, wires and monitors all over him and yet he is still pretty content. I was able to change his diaper, which was nice, made me feel like his mom. We were there when the docs did their rounds so we were able to hear the run down on him. They will do the repair surgery and place an external drain for the fluid in his head until he is healed enough for the shunt surgery in a few days.  It is hard to not be able to hold him when he fusses, but he is doing amazing.

Thomas update

Repair surgery will happen tomorrow, since the lesion is open they want to get it closed as soon as possible. His movement is good. The PT saw him today and she was very happy with his leg reflexes and hip movement. Unfortunately, the closure surgery carries some risk to damage more nerves and take away some of that mobility. His ventricles are very enlarged and he will have to have shunt surgery later in the week. They like to wait a few days if they can after the repair surgery. He will be under general anesthesia for both of these procedures, so please keep him in your thoughts as it is tough for such little guys to go through that and it can cause breathing problems. He is so content it seems, not a lot of crying. He can't eat until after the repair surgery, but the good news is that I have been able to pump and get a good amount of colostrum for him to have after the surgery. 

We will also still need to be evaluated by urology to see if he has neurogenic bladder and if we need to do daily antibiotics or straight cath him. This should happen after repair surgery but probably before shunt placement. 

Lots of stuff to think about, but it all seems so much more conquerable now that he is here. That being said, it is so weird that I don't see him yet. I feel like everyone knows my baby better than me at this point because they see him and touch him and talk to him and then I get to enjoy the pictures, but I am patient and I know the time will come where we can get to know each other, until then, he's on my mind and hopefully feels the love from across the street!

He's here!!!

We welcomed Baby Thomas Rogers Flach to the world this morning at 10:56. He is doing well. 6.6 lbs and cried his way out!!! He is on his way over to the NICU at Children's and John is with him. Now we wait until the neurosurgeon can evaluate him to learn what the next step is. Tentatively surgery is set for Sartrday morning.

Hearing him cry was amazing, I didn't get to see him right away, but that little cry melted away all my fear about this journey we are starting. He's here, he's ours and he's perfect!!!

Will update once we know more.

Date is set

Sorry for the delay in this post, just been busy getting everything together. We have an official time of surgery and date. Thursday, July 17 at 10:00 am, I will have a C-section to welcome Thomas Flach into our world. It is nice to have a confirmed date and time. Most likely at this time next week (Saturday) he will be recovering from his closure surgery on his back - we have a block in the OR schedule for Saturday morning if everything goes to plan and there is no emergency situation that arises. We had a chance to tour the NICU this past week, which was nice to have a familiarity of the place we will be spending the majority of the time. The nurses and other workers there all seem very nice and patient and it put me at ease a bit more.

My last preggo appointment will be Monday, we will get one last ultrasound and I have an anesthesia consult to prepare for the C-section then the next time we go to Cincinnati we will get to meet Thomas! The emotion of the whole situation still creeps up on me at times, but for the most part, I am ready. I am ready to meet the newest man in my life and get this journey started. To see his face and speak to him and just to know him. We will update the blog as much as we can to keep everyone in the loop with news as it pops up and Thomas pictures when we can!

The quiet moments

Peace and quiet....I really used to enjoy peace and quiet. What parent of young kids doesn't?? Time to sit and relax and have your thoughts to yourself. Unfortunately, I no longer enjoy quiet moments. Hopefully it is just the raging pregnancy hormones I am having at the end of this 39ish week journey, but I find myself in the quiet moments unable to process anything. My mind jumps around to every scenario I can fathom. The details of what I come up with in my brain aren't even important, it's just the fact that I can't wrap my head around how our life will be. I am not scared of the C-section, I trust the doctors (that is a lot for me to say b/c I don't really trust doctors all that much about some things!). I know they do so many cesareans that they are second nature, I know that healing afterwards for me will be fine and if breastfeeding is meant to happen and I work hard enough at it, I can overcome any kind of shaky start we may have. But I am scared. I am scared of EVERYthing else. How big is his lesion? How much pain will he be in? When I go to say good-bye to John and David, what do I say to them? I don't even know for sure when I will get to see them again or when they would even get to meet their brother. I cry thinking about that moment. How will they perceive this whole process? I hate knowing that I will be so out of sync with them and not be able to hold their hand and explain everything that is happening, but then I hate that I feel that way b/c Thomas needs me right now. He needs all of me, he needs me to bring him into this world in the safest way possible and for me to take the time to heal myself so I can properly take care of him and learn about what he will need from us. I feel like there isn't enough of me to go around and therein lies the mommy guilt that I am sure all moms feel. I am sure all of this is being compounded by those stupid raging hormones. I am constantly on the verge of tears (John is such a lucky guy, isn't he??). We went to an outdoor concert a day ago and I didn't even really like the sound of the band or the singer's voice that much, but she sang Somewhere over the Rainbow and I lost it. Had to put on my shades at a family concert in the park so it wasn't awkwardly obvious that the very round girl sitting in the grass is crying. But the words really got to me....

"Somewhere over the rainbow, Skies are blue,
And the dreams that you dare to dream, really do come true

Someday I'll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemon drops
Away above the chimney tops, that's where you'll find me

Somewhere over the rainbow, blue birds fly
Birds fly over the rainbow, why then, oh, why can't I?"

 
What will Thomas think of his life? Will he wish he was different? These questions can be asked by any parent, really, but for some reason I can't shake the fact that he will want to be different than he is and that SCARES THE S&*$ out of me. I am reading a book called Wonder. It is an incredible book about a boy with physical differences and I encourage anyone with kids to read it (or really anyone at all), but there are times I can't see the words on the pages, because I get consumed at how Thomas will be perceived by his peers and how this will affect him.  If he is in a wheelchair or needs a walker or braces to move, and how he will probably be in diapers into Kindergarten. I feel so helpless even thinking about it now. Those are what my quiet moments are made up of now.... but I just have to keep showing up and being brave because that is what he will have to do. The other book I just finished (I promise I won't turn this blog into a must read list of books, but reading right now soothes me) Carry On, Warrior by Glennon Doyle Melton was an inspirational pick me up right at the correct time. She talks about life is hard not because you are doing it wrong, but because it IS hard. Parenting is hard because it IS hard. Just because it is hard doesn't mean you are missing anything or that you aren't doing it right. Every time you read one of those Facebook articles on how fast it will go by and how you need to seize the day and remember every moment and you start to feel worse about yourself for being tired or being scared or being unsure of how to do whatever it is you are supposed to do as a parent you are buying into the wrong philosophy. It's ok that it is hard and it's ok to be scared....which was good news for me b/c I am scared. I am scared of the unknown that is about to be thrust upon my little family. I am scared. I don't know what I am doing with the kids that I have now so how the heck am I supposed to help a new little guy navigate this world with challenges that I can't even fathom.  

At the doctor's appointment today, we got another slight little curve ball that my pregnancy hormones handled beautifully (insert sarcasm here). They may be doing the C-section as early as next Tuesday.....you read that right. Basically a week away. I am not ready...would I really ever be ready for this next step, I don't know, but don't move it earlier. That is days earlier that I have to say goodbye to my boys, days earlier that I will have no control over what happens (just humor me in the fact that I feel somewhat in control usually) with one of my kids. And to top it off, we won't know for sure until Thursday when the date is....I keep telling myself that this is the universe, or God, or my guardian angel, or even Thomas (depending on what you believe in) just giving me a dose now of getting used to rolling with some punches and being out of control, but still needing to show up and be brave. Hopefully at the appointment on Thursday I will have come to terms with this and leave the office ready for whatever they tell me. On a side note, and the happiest note of the day, Thomas weighs 5lbs 11oz right now, which is more that David weighed when he was born. We also got a new bed for John and a new crib for David on the way back from the hospital, so I can put off lots of those horrible peace and quiet moments putting everything together and cleaning the house getting ready to meet our son!

Biffin ain't going to be easy

I am a little behind on updating from appointments, so let's catch up...last Thursday the non-stress test was fine, he passed with no issue which was great! Then I went straight up to soccer camp for the weekend in Ada. I came back and had an ultrasound on Monday. The ventricles were 27 and 23 cm, which puts us squarely in the hydrocephalus territory, but it is good news that there wasn't a huge increase from the last time. Today, Tuesday, was the meeting with the pediatric neurosurgeon, Dr. Vogel. I liked him. My dad has on many occasions mentioned to trust my Sys1 (initial instinct) and in this case it is telling me to like Dr. Vogel, so we will go with it. We learned a lot from him, but there was also a lot of 'wait and see'. Here is what we know to expect now. We will be having a C-section on July 18, not sure what time yet. Dr. Vogel said that it is better that way as it would be gentler on the baby so that is what we will do. After birth, the team in the room (yes he said team, so I am not sure how many people get to see my insides and be present in the room, but should be interesting) will evaluate the baby and see what we are dealing with. If there is no emergency situation with him and they can sterilize the opening and cover it without a problem, he can hang with us for a few moments, but we will not be able to hold him. He will be transferred from University Hospital to Children's (about a block away) where he will go into the NICU. They will do all the imaging and testing on him at this time (MRI, Urology, Heart rate, lung capacity, ultrasound, etc.) to get a baseline for his numbers. Then within 48 hours of birth they will do his closure surgery. To do this, they pull all the layers of his skin and muscle over the opening and close it up. Depending on how big the opening is, they may call in plastic surgeons to help with the closure and the scarring. After the surgery, it is back to the NICU where we try to keep the wound clean and free of any 'debris' that may come up the back of his diaper. He will only be allowed to lay on his stomach at first and then he will transition to his side as they think the wound can handle more pressure. Normally it is about 3-4 days before we can hold him, even once we are able to hold him, he will have to be on a pillow on his stomach and the pillow can be on our laps, so we don't put any pressure on the wound. That doesn't sound like holding to me, but I am sure when the time comes it will be great to even be able to do that. Over the first 7-10 days after the closure surgery, he will be monitored very closely in the NICU for his ventricles and head size numbers. Based on his enlarged ventricles at this time, Dr. Vogel said we are to expect a shunt. He prefers to do a non-programmable, medium flow shunt at this time since they have less instance of malfunction. Normally the shunt surgery will take place around 10 days, if not before, and then we will not be able to 'hold' him again for a few days while that heals. He said that the healing from that may only be a day or two. The shunt will be able to be seen through the skin as a tube running just under the skull and the sutures are the kind that get absorbed. Once his hair grows in and his skull thickens as he gets older it will be less visible, but for the most part you will be able to see his shunt. The shunt is the main part of Spina Bifida that we will deal with early on. On average, people need shunt replacements 6-7 times, each time this happens it is a surgery. This was hard to hear "your child will need serious surgery near their brain multiple times in their life, possibly multiple times in their first few months of life". Just what every parent hopes for their newborn! A shunt malfunction can present in many different ways and Dr. Vogel said we will become familiar with how it will present in our little guy as we gain experience (also something that is not great to hear "you will become very good at knowing when the pressure in your child's head is too much for him to handle b/c he will act strangely and be in pain due to the collecting of fluid on his brain"). Sometimes a symptom can be something easy to notice like sunsetting eyes or a bulging fontanelle, but sometimes it can be more subtle like fussiness or vomiting (also known as normal newborn behavior). I have a feeling I will know the number to the Spina Bifida clinic by heart in a about a week or two. While in the NICU, we will learn how to catheterize him to help him empty his bladder completely. This is something that sounds a little overwhelming when I stop and think about it. We will literally have to stick a catheter up his penis to empty his bladder multiple times a day (I know that is a lot of information and a tad graphic, but I can only imagine that this is the tip of the iceberg with how graphic things will get, so please be prepared for this type of talk).  This will help him not get UTI's and keep him from getting kidney damage. There are procedures now that you can do once the kids are older that sometimes help with their continence, but for the most part, when they are little, they have no control over their bladder and bowel movements so you have to really stay on top of diaper changes and catheterization. Babies with Spina Bifida get diaper rash very easily because they can be constantly pooping and peeing so they always have it against their skin. All in all, we are expecting a NICU stay of around 14-18 days, then hopefully we get to come home and be a complete family.

And that is where we are. We are on a countdown to baby Thomas. This is such a surreal feeling to have a countdown to baby after our other two middle of the night dudes. Part of me is sad that I won't get to feel the contractions and do the labor, but I completely understand that this isn't about me and this is what is best for Thomas (we have decided to name him Thomas, by the way). After hearing the details about everything that Thomas will go through in just his first few days of life, the least I can do is allow him an easy and traumatic-free way of entering this world.

Next appointment is Thursday for a non-stress test. We get to meet Thomas in 17 days!!!