Note to Our Visitors!

October 7, 2012 by Kate

A huge thank you to those of you that have stopped by to visit. It has made some of our days go much faster and has been a good distraction. I cannot imagine doing this at Sparrow where the NICU was a group room and there really was no where to sit, store personal items or anything. Here we have a completely private room, a pull-out couch bed, closet, fridge, sink, and storage drawers.

For those of you that do wish to visit still, please make sure to arrange a time with us as we are limited to having four (4) people in Colten’s room at any one time. There is a family waiting area where additional guests can wait if we run over, but it might just be easier and less chaotic to set a time up with us. Plus, we are anticipating a few tests and procedures this week and would hate to have you show up when we’re no where to be found!

Also, Colten is currently off antibiotics, although he’ll be starting a low-grade dose antibiotic tomorrow, so if you have any sign of sickness or have been exposed to something contagious, we ask that you help us keep him and all these other NICU patients healthy by staying home. Get yourself healthy – there will be plenty of time to visit Colten after we get him home!

Onto Recovery!

October 6, 2012 by Kate

It feels great to start a day on a full night’s rest. Midnight to 5 AM is a full night’s rest, right?! It certainly is more sleep than I’ve had in quite a while!

We got a phone call this morning from the nurse on duty (by the way, these nurses are incredible, patient, kind and so incredibly supportive!) letting us know Colten was stirring and rooting! Unfortunately they called Richard’s phone and for those of you that know us, or even just him, you know how that shook out. So by the time he noticed a call had come through and we called back, Colten was sound asleep. We got ready and came back to the NICU for the day. Colten nursed like a champ this morning and then just sat with me, then Richard for a couple hours this morning. He is still mostly just sleeping but his body needs the rest to focus on healing right now.

It’s so nice that during all the doctors’ rounds and check-ins, even if Colten is being held by us, they just do their exam right there instead of making us put him back in bed. And the doctors have all been incredibly patient in answering questions and explaining procedures and diagnoses to us.

7:00 am – The plastic surgery team checked in and all is looking great from their perspective.

8:30 am – The attending orthopaedic surgeon, Dr. G. Ying Li, came to visit and talked mostly about Colten’s feet and moving forward. She confirmed that he doesn’t have club feet, but has calcaneo valgus. Basically club feet go down and in, calcaneo valgus go up and out. This can often be corrected or at least improved through bracing or casting. You might wonder why it would be important to correct if his feet are going to be unusable. Don’t worry, we asked! Even though his feet would not really be doing any walking motions, a brace that goes from his hip or knee would connect down to his feet and we need his foot bones to grow properly in order to provide the best brace fit and assistance with stability. We can’t do much else at this point but talk with the physical therapist about getting braces. We’ll follow up with the ortho doc once Colten can lay on his back and further testing can be done. She will also get an ultrasound at that time on his hips, since he has two strikes against him when it comes to hip dysplasia – being breech and having spina bifida. We aren’t sure what movement he even has in his hip muscles at this time. Based on his level of defect, it’s possibly he’ll need quite a bit of therapy and/or assistance to get good hip movement.

9:00 am – Neurosurgeons checked in to monitor hydrocephalus. So far he’s looking good and will get an ultrasound on Monday of his head to get some actual ventricular measurements. Based on some of the findings during surgery, the neurosurgeons told us that even had we found out about his spina bifida earlier, we would not have been candidates for the in-utero surgery that some hospitals offer to close the spine before birth. This surgery is still very experimental as it is and requires a lot of follow up care after it’s done, before the birth. But the goal is to minimize some of the damage and reduce infection and surgery after birth.

10:30 am – NICU rounds include a variety of specialists and the neonatology staff (nurses, doctors and other providers). They are monitoring more of the general health of the kids up here – weight, feedings, antibiotics, caring for the other items involved in the care (catheters, tubes, etc…). Colten’s weight is down to 7# 3 ounces. He’s still a healthy weight, and it’s hard to get a feel for what his normal was to begin with because he obviously had some additional masses attached to him at birth (7# 14 oz). Then surgery pumped him full of fluid, then he lost that, and he’s been mostly consuming just sugar water via IV. So now that we’re post-op, we have a better baseline and can monitor from there. He has a feeding goal and we’ll be both breastfeeding and feeding my milk from a bottle so they can more closely monitor the amount of milk he’s getting. They aren’t overly concerned, we just want to be able to get him off the IV by tomorrow.

11:40 am – Lactation consultant came to chat and provide some insight on feeding and pumping together to make sure all went smoothly.

So that’s been our morning. Colten has slept through most of it. He has no idea the fun he’s missing! Today and hopefully the next few days should be fairly quiet besides some blood draws, more consultations and a couple tests such as an ultrasound. No major changes coming to him yet. The next big thing that would take place, if it takes place while we’re here this time, would be the shunt placement. So we’ll be watching for that. We just want him to be a bit more awake and alert so we can see those beautiful eyes again!

Surgery #1 – Fixing the Spine

October 5, 2012 by Kate

Colten’s surgery was at 7:30 AM today. Prior to surgery I was able to hold him for short while, then the IV on his head had to get removed due to malfunction. It was replaced by another one in his hand. Apparently with little ones, IVs don’t often last longer than a day because the kids tend to mess with them so much; sometimes they’ll only last a few hours before needing a replacement.

So they took Colten back around 6:45/7:00 AM – we traveled with him back to pre-op until they took him to the OR. We were expecting him to be gone for 6-8 hours. At 8:45 AM we received a call that he was stable and surgery had started (not sure exactly what time they had started the actual surgery). This first part was expected to last 3-4 hours according to the one neurosurgeon yesterday. About an hour later we got a call saying the neurosurgeon was done and plastic surgery was going to get started on closing him up. Around 11:30 AM, the plastic surgeon, Dr. Kasten, came up to let us know he was all done. So the surgery went MUCH quicker than we anticipated and all went well. Bonus bonus!

The external sac was the largest one the neurosurgery team had seen before, yet once they got through the outside tissues, the actual opening was pretty standard. The area of defect has been determined at about L3 (lumbar 3). I’ll write more on the clinical issues related to that when I find my chart. During surgery, in order to help close up the opening, the team has to pretty much finish folding in the spine around itself and making sure the nerves and meninges are back in place. Then the pediatric plastic surgeons step in to seal the hole. They do this by pulling some lower back muscle from each side of the spine and overlapping it, sometimes including some muscle from the glutes. Because of the size of Colten’s sac, the plastic surgeon had plenty of skin to use – even cut off some usable skin because there was so much. All the meninges that had grown outside in the sac was removed – it’s not needed and not viable.

Now that surgery is over, Colten is hooked up to an IV, a catheter, a port drain near the surgical site, and a variety of monitors/leads (heart rate, blood pressure, oxygen, respiratory rate). It makes picking up your child very cumbersome and requires a nurse to assist. This is very hard on us – we just want to grab him up and enjoy him. However, he also has strict recovery orders and must remain side-lying only, must remain perfectly horizontal, and must keep a blanket between his legs to help support his hips. He will not be allowed to back-lie for three (3) weeks. If he goes home before that time, we will be provided with a special carseat-bed to take him home in so he can remain side-lying.

In terms of Colten’s physical responses, we started on October 3 with only right-quad movement and nothing else in the legs. On October 4, Colten showed signs of response in both quads but nothing below the knees. We have a clear understanding from our research and from the doctors that any spinal surgery now and down the road (as he will need more over time) will often cause some additional damage. It’s just the reality of this type of surgery. So after surgery today, it did not surprise us when we were back to no quad response on either leg. By the end of today though, the neurosurgeon apparently pissed Colten off enough that he was able to get a response on his quads again. So that is promising. Still nothing below the knees, as we expected. Surgery on kids with spina bifida will never make better the damage that is done to the nerves. It only carries risk for further damage.

Here is a resourceful link to the chart by the Spina Bifida Association that relates the area of defect and the typical complications associated with that area:
Spina Bifida Association Spinal Chart

Tonight we found out we secured a room at the on-campus Ronald McDonald house. Since Colten is so out of it still from the anesthesia and is still being fed via IV, we will take advantage of a full night’s rest. Hopefully he will be back on feeding with me tomorrow and then I’ll most likely stay in his room overnight and Richard can get a good night’s rest at the RMH. This also allows us somewhere more private to get out to, take a daytime nap, shower, etc…

Thank you to all of you that have reached out to us in one way or another. The outpouring of support, thoughts, prayers and offers to help are incredibly comforting. Thank you for coming along on our adventure!

Pre-Surgical Update

October 4, 2012 by Kate

So today was Colten’s first full day at U of M Mott Children’s Hospital. It was a good day! The staff and environment are both fantastic. We know we’re in the right place for him.

I was discharged today at about 1:00 PM, about 24 hours post c-section. This is really not appropriate, but I think the staff felt bad for me since Colten was so far away. So thank you to them!

While I was waiting to break loose, Richard and my Dad met with the neurosurgeons at Mott’s. Dr. Maher will be the primary and comes highly recommended. He is one of six board certified pediatric neurosurgeons in the state. He recently operated on a friend of ours’ 2-year old daughter, also at Mott’s – and they’re still here, so hopefully we can catch up with them during this crazy time we’re all here.

Back to the neurosurgeon, Dr. Maher. He is “the guy” for Spina Bifida / myelomeningocele and has operated on more cases than most neurosurgeons in the midwest. We’re very excited he’s on Colten’s team. The plastic surgeon that will be on the team to help properly close the area up after he’s put back together, is Dr. Kasten. Coincidentally, We have seen Dr. Kasten a number of times for a vein anomaly that Parker has. So we already have a relationship with him and that was another great revelation today. Dr. Maher said that Colten’s myelomeningocele was actually one of the largest he has seen in terms of how much skin and meninges was outside the body. The hole in Colten’s back appears to be only an inch, which is small compared to how much was outside his body. If you want to see a gruesome picture, go to the previous post and there’s a link to a clear picture of Colten’s back.

Today’s neurological testing came back with no activity below the knees. Yesterday, only movement was detected in the right quadricep but that appears to have returned to a more normal function today. It could have been leftover numbness from being in the breech position so long. We are prepared though, that surgery could cause more damage, so it’s really hard to give concrete answers at this point. Colten also had two ultrasounds – one on his head and one on his heart. After the head ultrasound came back, it was determined that there is a 70% chance he’ll need a shunt but it’s not something they will do tomorrow during his spinal surgery. He will be closely monitored until he gets to the point that a shunt is required. We do not have results from the echocardiogram yet.

Couple more great things happened at Mott’s… Neurosurgery told me I could breastfeed Colten up till midnight tonight. I had been pumping at Sparrow because they were not allowing feedings at all, only sugar water, so to hear that I could finally nurse him directly was very relieving. So Colten and I got some extra bonding time! We also get visitors here – anyone we choose can come see Colten, even the boys. So we’ll try to bring them by this weekend to see their new little brother! I was able to help the nurses today take care of some diapers and change some dressings on his back – I am thankful I was able to be released so early from Sparrow so I could get more time with him pre-surgery.

One of our frustrations at this point is that whenever Colten cries, it takes a while sometimes to get a nurse to help get him out and protect all the wiring attached to him. But we aren’t quite comfortable just getting him out ourselves at this point. He now has an IV in his head because he was messing with the one on his hand, so we need to be extra careful maneuvering him. However, at least we can hold him!

Colten’s surgery will take place at 7:30 AM Friday (tomorrow) and should last approximately 6-8 hours. Surgery for the spine itself will last 3-4 hours. The rest is surgery prep, plastic surgery, and recovery.

Here’s hoping for a safe surgery little Colten!

Happy Birth Day Colten Robert!

October 4, 2012 by Kate

Welcome to the world, Colten!
October 3, 2012, 12:36 PM
Weight: 7# 14 ounces
Height: n/a

I started this post around 6:30 AM on Wednesday – yesterday, under the assumption I wouldn’t have time or desire to do a recap of the day by late tonight. So today’s post was going to be logbook style… Then so much was brought into us and we had some serious decisions to make. I simply did not have time to log updates all day. Good thinking anyhow!

6:40 AM
We are humbled and overwhelmed by support from everyone. The emails, texts, calls, blog posts and Facebook posts have been such a positive force for us – THANK YOU!

Last night I had a very positive dream about Colten. While I don’t recall the details it revolved around the staff at Sparrow being so excited when he came out because they felt so good about the location of his sac and his prognosis. That made me feel good and I actually got excited thinking about it!

9:50 AM
I’m waiting in the car while Richard runs into The Cigar Connoisseur, downtown Lansing. Nothing like waiting till the last minute! We need to check-in at Sparrow at 10. We are always late though so no surprise there.

Thursday, Oct. 4, 12:13 AM
What a day. I’m currently in a “mom & baby” room at Sparrow. Colten is on his way to Ann Arbor via ambulance (non-emergency, for a surgical transfer). Richard is on his way to Ann Arbor as well.

There’s really a lot to say but anything we say is speculation until further tests are done and surgery is complete. So in short, the sac was huge – almost the entire width of him. While it came out intact, it ruptured quickly due to the tension. Colten is on double-antibiotics to prevent meningitis and any other local infection. The picture immediately below shoes the sac wrapped up in moist gauze then sealed for protection until surgery.

IF YOU WANT TO SEE a very nasty picture of the sac (ruptured) with the spinal meninges in it, you can click here. If you are squeamish though, don’t bother looking.
Click here to view the medical file picture of Colten’s sac.

The neurosurgeon came to talk with us and said Colten has no neurological response in his feet or legs except for the right quad. He responds to some pricks and prods so he has some feeling but is not displaying active movement or normal reflexes. This translates to a lot of physical therapy, mobility assistive devices and potentially a wheelchair. But we have decided its not up to the neurosurgeon to predict Colten’s life, it’s up to Colten – with great help from all those around him.

The neurosurgeon also led is to believe both his feet are clubbed. The neonatology nurse practitioner and NICU staff led us to believe this may not be true though. He’s so bent up because of being cramped inside its hard to really tell.

The neurosurgeon also was pretty confident that Colten would need a shunt earlier rather than later.

So due to the more extensive damages than anticipated, we decided to transfer Colten to Mott Children’s Hospital for his surgeries. Once he’s checked out there we may have a completely or slightly different prognosis. They will run a few tests (CAT scan, MRI, ultrasound, echocardiogram) and we will go from there.

On a PHENOMENAL note, we got to kiss the sweet boy after delivery before he was taken to RNICU.

And after two hours of staying in recovery after the section, I was taken up to RNICU for about 30 minutes and could touch him through the isolate (sp?). Best thing though? He was scheduled for a transfer to Ann Arbor at 7PM, so at 6:30 I was wheeled up to say goodbye to him. They took him out and let me hold him… Then the transfer was delayed till about 10:30 PM. I got to hold him for almost 3.5 hours. He just slept contentedly in my arms that whole time. LOVED THAT!

So now we are between two hospitals… My dad went with Richard to Mott’s, and my dearest friend Kristen slept here last night with me. I heard from Richard a few hours ago with vague details that testing would all get run Thursday AM and ideally the surgery would be done midday on Thursday.

And that’s all we have for right now… Happy Birthday Colten!

There are more pictures in the Photo Stream link at the top of this website.

Last Day B.C. (Before Colten)

October 2, 2012 by Kate

Yesterday I had my last OB/Gyn appointment with Dr. Herta. Nothing special, just some information for prepping for the c-section and what to expect afterwards. We were scheduled for 2:00 PM tomorrow, Wednesday, with a check-in time of 12:00 PM. Then received a call this morning that they’re moving it to a 12:00 PM delivery, with 10:00 AM check-in. Less time sitting and waiting means less anxiety hopefully. Earlier is better in our opinion!

Dr. Herta confirmed she will do one more ultrasound before the c-section to get a final view of where exactly Colten is and where the sac is in relation to where they would like to do the incision. That is reassuring as the last thing we want is the sac to get punctured.

Today we had the fetal echocardiogram. Because Colten will be undergoing surgery they need to make sure there are no additional issues to contend with. If there are any heart-related problems, better for us to know that now in case we need to have a cardiologist at delivery, or lined up for further testing before surgery. Spina Bifida will sometimes be caused by a chromosome disorder (Trisomy 13 or 18) or just have other complications along with it. So Colten will undergo a few tests after delivery besides just head and brain monitoring. But today’s visit was just to get a better look at his heart.

Thankfully so far there is nothing of alarm, but the ultrasound tech and the cardiologist had a hard time seeing clearly two of the valves due to his position and size. They will recommend an echo on him after birth just for conclusive, full results. But it may not be necessary if attending docs don’t see/hear a need.

So we are enjoying our last evening as a family of four…

Statistics vs. Positive Thinking

September 28, 2012 by Kate

One of the local families we met last weekend at the Sparrow picnic recommended a book for us – Children with Spina Bifida – A Parent’s Guide, edited by Marlene Lutkenhoff. I immediately found the book on Amazon and ordered it.

It arrived yesterday and I started reading it today. Despite all the complications and possibilities of things that can go wrong through Colten’s life because of the Spina Bifida, I have truly tried to remain optimistic that we will be one of the cases that is incredibly mild. Yes, there are certain baseline things that will just come with SB, such as bladder and bowel control, but when I start to think about his mobility, I am extremely optimistic that we will either have it easy or he’ll be such a hard worker that he will walk, unassisted, at some point in his life.

Then, as I said, I started reading the book. I keep getting statistics thrown at me. New realities and things that could go wrong or things that might happen down the road or WILL happen down the road. Such as surgeries – most likely his first will be far from his last; fractures – incredibly common in children with SB; orthotics and assistive devices – very common even if just for short periods of growth and development. And then to keep reading about how even kids that do walk sometimes choose a wheelchair later on because it’s simply too draining for them to walk.

Not that any of us can ever predict what our child’s life will be like, but it’s just that much scarier when you know how many challenging things truly are coming down the road ahead.

Here are some statistics from the book…

7 out of 10,000 (1 in 1428) babies born in the United States have spina bifida.
95% of babies born with spina bifida have parents with no family history of spina bifida or related birth defects.
80% of babies born with spina bifida will end up with hydrocephalus, requiring a shunt inserted through the skull into the fluid cavities of the brain. I don’t know why I was thinking this was just a superficial implant between the skull and skin. Then it hit me today that this is brain surgery. How I missed that realization I will never know.
85-90% of children born with spina bifida will have the Chiari II malformation, but only a small percentage show symptoms and problems that eventually require surgical management (shunt revision or placement at a minimum).
Tethered cord is found in 100% of children with spina bifida; this is a result of scar tissue from the surgery after birth. Surgery is usually inevitable and may be required multiple times throughout the person’s life as re-tethering can occur.
30% of children with spina bifida have clubfoot.
Scoliosis affects over 50% of children with spina bifida.

And those are the statistics. Then there’s a bunch of other stuff I just read that is just as unsettling but doesn’t have statistics tied to it. So I’ve closed the book for tonight. I know this book will become a fabulous resource for us for years to come, but it’s a bit overwhelming right now.

And We Have a Birth Date!

September 27, 2012 by Kate

I must say, not knowing the gender or arrival date of either of our other two children, it’s VERY weird to know the gender, have a planned birth date, and have the name publicly known! New normal, right?

Today we met with our WONDERFUL OBGYN, Dr. Nancy Herta. We were SO glad to be able to transfer back to her care after our not-so-good experience with the OB at the perinatal office. She met with us for quite a while to answer questions and get the c-section date set, as well as some idle chatter. Not many doctors take that much time with patients so we know we’re in the right place with her. If I don’t go into labor before, we are scheduled for October 3rd, at 2:00 PM. This is also the birthday of a life-long friend of mine, Loren!

One of our biggest concerns about the c-section is Colten’s safety and not puncturing the sac. Colten is actually in the worst position possible right now – his back is up against my belly and he is butt-down. So right about the area where they need to do the c-section on me is where Colten’s sac is. And we really really really don’t want to mess with that. So we asked Dr. Herta to explain how this would be different from a “normal” c-section. (WARNING: If you are squeamish, you might want to skip the rest of this paragraph.) She said she’ll make the incision in the normal place on my stomach, but when she gets to the uterus, instead of just opening it up, she will have to score it gently with the knife and not cut through. Then she’ll need to actually work that layer open with her fingers to avoid putting a knife anywhere near the sac. Without breaking the bag of water, she’ll get her hands underneath Colten, by his belly and front hips and work him out back/butt first. This will keep him surrounded by water to help protect his back as he moves through the opening in me. Once that part of him has cleared me, she will then break my water and get the rest of him out.

Dr. Herta said she likes to position the bed (I believe they’re called isolates in this case – the enclosed clear plastic bed with two arm holes) up near the mom’s head so I may actually get to see them do some work on him. Richard will be in there of course and he’ll be taking pictures – again, those won’t be for the squeamish! After we (hopefully) get a few minutes of seeing him and some kisses, he’ll go straight to the RNICU and Richard can go with him. At that point, our Doula will come in with me so I’m not left alone.

So our upcoming schedule at this point looks like this…
– Last OBGYN appointment Monday
– Fetal echocardiogram on Tuesday
– C-section on Wednesday
Colten will then undergo some testing before surgery including hydrocephalus monitoring and a CAT scan. His surgery will take place Thursday or Friday depending on a variety of factors.

We are incredibly thankful that my parents will be taking care of the boys for us from Wednesday through Sunday. The boys will get appropriately spoiled with Grammy & Papa, and it will allow Richard and I to focus on Colten during the critical first few days.

We are looking forward to enjoying some quality time with our boys this weekend and are relieved to know a date (if we can hold off till then, that is!). Now it’s just a matter of waiting to welcome Colten…

Consultation with the RNICU Neonatologist

September 26, 2012 by Kate

Today we went for our consultation at the RNICU (Regional Neonatal Intensive Care Unit) and met with Dr. Said Omar, the head Neonatologist at Sparrow. It was quite informative and answered a good chunk of our questions about Colten’s care after he is delivered, and a few about the surgery itself. There are still many unknowns due to the fact that we simply don’t know what issues he might have on top of the Spina Bifida, but Dr. Omar was very helpful in the more concrete areas.

It was confirmed that ONLY parents and grandparents are allowed to visit Colten in the NICU, and that grandparents can only visit from 12pm-7pm and must be accompanied by either Richard or me. Colten will go right to the NICU after delivery and be there until he’s released from the hospital. Immediately after delivery, barring any emergency issues, Dr. Omar said that we might get to touch and kiss Colten before he’s taken to the NICU but won’t have a lot of time with him. Depending on how he is and a variety of other factors, we MIGHT even get to hold him again before surgery, especially if the only thing he’s hooked up to is an IV (he’ll initially be fed only glucose, water and electrolytes, probably antibiotics in there too). Big “maybes” but I’ll take a maybe over a flat-out NO right now. Surgery ideally is done by about 24 hours after delivery but will depend on when we deliver and any other complications.He would not state how long surgery might last because every child and case is so different and has so many variables.Prior to surgery, Cole will have a CAT scan, possibly heart monitoring if needed, and will be watched for hydrocephalus. After surgery he will be monitored for bladder/bowel function and digestion issues.

We got to see the type of bed Colten will be in – basically a plastic box with two holes for arms to reach through. All the babies had their own blanket over the top lid and some had pictures and other personal items in their area of the NICU room. He will be placed on his stomach until after surgery so as not to rupture the sac. They’ll cover him with a clear plastic “blanket”, kind of like a Saran Wrap thing, that will keep the sac protected from injury or infection.

We were happy to see signs around the NICU hallway that promoted skin-to-skin and Kangaroo Care. We hope Cole can spend enough time OUT of his bed and on us, especially post-op. Being full-term, barring any other complications, this should be something we can look forward to. We just have to take extreme caution holding him because of his spinal surgery of course.

That’s it for today. Tomorrow is our follow-up OBGYN appointment with Dr. Herta where we hope to find out the scheduled c-section date (I’m hoping for early next week as I feel I’m about “done”). Because I tend to go early, we prefer them schedule this sooner rather than later. Even though whenever we go in, there will obviously be plenty of specialists to take care of everything, everyone keeps reiterating that “during the week, during the day” is the optimal time for the absolute best care. So let’s hope we get scheduled for next week, or Cole might get impatient!