What the Doula?!

September 24, 2012 by Kate

On Saturday, Richard and I had our second meeting with our Doula, Christin, from In Harmony Doula. This was a late-addition to our pre-natal team and was by complete chance. Christin had a flyer up at Greenhouse Birth Center advertising her services for free for moms due in October and November. I had recently met Christin at another community event and since the service was free (she has to get hours in as she completes her Doula certification), I thought, why not?! Little did we know at the time how valuable she would become to us.

Christin had her second two children at Greenhouse Birth Center – where we also had Parker and Max and originally planned to have baby #3. Without revealing too much additional personal information here, we’ll just say that she spent seven days with one of her children at Sparrow’s NICU.

We met with Christin shortly after finding out that the baby was still breech. Knowing that if breech we would need to go to a hospital to deliver, we wanted to make sure we still had a support team with the same fundamental birthing philosophies we have. A doula’s purpose is to support the mom in any way possible during the birth process – from emotional support to physical to medical. Knowing we would be in a hospital experiencing birth in a whole new way, it gave us some comfort to know it wouldn’t be all new doctors and nurses, there would be at least one familiar supportive face.

When we found out Colten has Spina Bifida, having Christin in our corner jumped up to a whole new level. At our meeting on Saturday we mostly talked all about what to expect in the NICU. Her having experienced this first-hand shed a light on things we never would’ve thought about and I’m sure aren’t standard pieces of information provided by the hospital staff (we have our NICU consultation Wednesday of this week).

We are extremely grateful for her support, companionship and experiences at this time! Thank you Christin!

A Tale of Two Cities

September 23, 2012 by Kate

Today was an interesting day – a welcoming into one community and a farewell to another.

We started the day at a picnic for the Sparrow Clinic that treats kids with Spina Bifida. What good timing that this picnic took place after we found out about Colten’s diagnosis, but before we’ve been thrown into the thick of things. We met two extraordinary families, both with children with SB – the one boy is 4, the other family has a little 7-month old girl. Both openly shared their stories, pictures and children with us. It was incredibly comforting to talk with them about their experiences and have them shed new light on the road ahead, even if that road looks a bit bumpy at times.

The most distressing news from today is that there is a very real possibility that neither Richard nor I will actually get to hold Colten until AFTER surgery. I was given hope by another person that I might at least get a few brief times to hold him pre-surgery. Since surgery isn’t usually done until 1-2 days post-birth, this means we will not have the joy of holding our new little man until possibly day 3 of his life. This came as disturbing news, as we held our other two immediately and were even home with them within 6 hours after birth! This is just our new normal though…

Immediately after the c-section, Colten will be placed in a covered infant unit (I keep using the term incubator but I know that’s not accurate!) that has two holes where we can reach in and touch him, but until the surgery takes place, holding him is apparently out of the question. The one family DID get to hold their daughter prior to surgery a couple times – they delivered at U of M Mott Children’s Hospital, not Sparrow. This and a few other factors about Mott’s had us seriously considering going there as an option, there are just so many other factors we have to consider and Sparrow is where we feel we need to be for the birth and first surgery. After that, we will probably use Mott for other therapies, tests and the like.

Meeting these families certainly helped us feel like we’re not alone… we know we aren’t truly alone – as is evident by the reads and comments of this blog, but it’s nice to be in touch with families that have gone through something so similar to us. Every case of SB is different, but there are enough similarities that we found a lot of comfort in meeting with them.

Other things that were made more clear to us today… Hydrocephalus (spinal fluid collecting over the brain) is extremely common and the insertion of a shunt is very likely in kids with SB. If a shunt isn’t implanted immediately, Colten will be monitored regularly (every week at first) for the possibility of Hydrocephalus. Another common issue down the line is tethered spine – where the spine fuses with the scar tissue from the initial surgery and tugs as the child grows. Often children need a second surgery to correct this years down the road. The one mother also informed us that her c-section was done at 36.5 weeks (that’s exactly where we are now). So why my OB is telling me 39 weeks, I have no idea (more on that below). We also found out that depending on Colten’s conditions and health, we may actually get to bring people back into the NICU to see him. We hope to get more information on this Wednesday when we do our NICU tour and consultation.

As for the second city? Today we attended a Farewell Gathering for Greenhouse Birth Center, where both Parker and Max were born. Greenhouse will close its doors to families at the end of October (we would’ve just squeezed Colten in!) and the community is sad to see this happen, yet hopeful that another birth center will come into play soon for families choosing that as a birth option.

While there, we spoke with one of the midwives and talked about our less-than-desirable experience with the OB/GYN at the perinatal office we met when we first found out about Colten’s Spina Bifida (it was a bad first impression and left us not feeling great about the OB we were “stuck” working with). The midwife informed us that our initial referral out of Greenhouse, to Dr. Herta, did not need to get transferred to this other OB and that she would connect to find out if Dr. Herta could still do the c-section. When we got home, we received a text from the midwife saying that YES, we could stick with Dr. Herta and that she would take care of transferring care back. When we were in our appointment Tuesday at the perinatal office, the OB there didn’t even give us a choice, nor did she inform Dr. Herta that she was transferring care (more bad vibes from her!). So we are excited to be back in Dr. Herta’s hands – she has worked with many moms over the years that, for one reason or another, have had to transfer out of the birthcenter into the hospital. So that was our big thumbs up for today.

I’m hoping Dr. Herta pays a bit more mind to the fact that we’ve had both our boys early (37 and 38 weeks) and that waiting until the 39th week is not going to be ideal. Due to the team of specialists that need to be available for Colten immediately after birth, it is preferred to schedule a c-section and not wait to go into labor at any random hour of the day/night. So hopefully we’ll find out soon when they are going to help us bring Colten into this world.

Although things are much less scary with him safely inside…

Diagnostic Ultrasound

September 22, 2012 by Kate

As mentioned, we had a full diagnostic ultrasound done on September 18, 2012, exactly one month before our due date. This is what led to the diagnosis of Spina Bifida, and the revelation of our third child being a boy. In order to lay the groundwork for what is coming our way, I wanted to include the findings on the blog for those of you that are more medically inclined or just inquisitive. And for our own collection of notes, as this blog will eventually be converted in part to Colten’s printed baby books.

Snippets from the “Obstetrics Report”… Mostly I included basic stats and any abnormalities. There are so many statistics and observations on this report that I do not know what they represent. Below are abnormalities or facts of interest only! There are many items on the actual report that are listed as “suboptimal imaging” due to Colten’s size (harder to see with so much body in there this late in the game) and/or his position with his feet and hands up by his face. In the end, it doesn’t matter that they couldn’t get everything they wanted to view because there’s nothing we can do now except wait and see.

Fetal Heart Rate: 138 bpm
Presentation: Breech
Placenta: anterior
Estimated Fetal Weight: 7# 1 ounce (89th percentile)
Fetal Central Nervous System – Lateral Ventricles: abnormal
Fetal Central Nervous System – Cisterna Magna: small, 2mm
Fetal Spine – Sacral: abnormal

IMPRESSION
Breech presentation with back down.
There are a number of anomalies identified today:

Bilateral Ventriculomegaly 1.5cm diameters each side. 3rd Ventricle is enlarged (3mm). Posterior fossa difficult to evaluate but cerebellum still has normal shape (not banana sign), however the Cistena Magna only measures 2mm (small). CSP is not well seen, however this may be due to fetal lie limitations and breech. There appears to be pericallosal artery coursing around the anterior, sugesting the presence of the Corpus Callosum. Head shape suggestive of “lemon sign”.
One foot may be clubbed. Contralateral foot difficult to see.
Large cyst in the lower back of fetal spine (sacral area). Measures ~10cm in diameter, and contains multiple strands/septations which appear to be eminating from the fetal lower spine. Due to fetal breech back down position, it is difficult to see the L/S bony structure well. I see a skin defect in one transverse view.

This constellation of findings suggestive of OPEN SPINE DEFECT: I suspect this is in the sacral area, but may also involve the lower lumbar.

So what does some of that really mean? In our own words/understanding…
The 1st point could be indication of hydrocephalus (fluid around the brain) which is extremely common in children with Spina Bifida. Many kids with SB require a shunt to properly drain this fluid into the abdominal cavity. This is something that could be present right at birth or could develop later. Ideally the measurement here should be 1cm, or 1.4cm on the larger, safe side. So Cole is measuring just a bit beyond that which puts him borderline.
The 2nd point could be an indication of a chromosome issue, such as Trisomy 13 or 18. Sometimes Spina Bifida occurs on its own, sometimes it comes as a result of a chromosome problem. This is something we won’t know until after birth. Deformaties and weaknesses in the legs/hips are common in children with SB anyhow, so this could simply be that. A clubbed foot or feet would be braced and treated as needed, surgery if required.
The 3rd point is the tell-tale sign of Spina Bifida. The sac/cyst is about 4″ – a pretty big size, but seems to sit low on the spine. The lower the better, generally speaking. The sac being ONLY on the sacral area is as ideal as we can get. Moving into the lumbar region will just mean more challenges.

Here is a profile of our little Colten…

This image shows the bottom portion of the spine (lumbar and sacral). The large black area surrounded by a jelly-bean type shaped white line is the cyst, or sac.

The next four images just show various views of the strands/septations that are visible within the sac.

Half Full or Half Empty?

September 20, 2012 by Kate

So my husband and I appear to be approaching this Spina Bifida diagnosis in two very different ways, which is typical of our personality styles… I am envisioning that Colten will be born, have a simple surgery to remove a cyst/sac, and we’ll go on with our lives. If it is anything more than that, we’ll just take things as they come. Richard is expecting the absolute worst-case scenario and figures if it’s anything less than that, then good for us! I’m assuming we should just meet in the middle.

However, I spoke to a wonderful, helpful and patient nurse yesterday at Sparrow and had so many questions answered (thanks Layna!). Unfortunately not all answers were what I wanted to hear. First, she had me adjust my “best case scenario” – that this isn’t just a simple removal and done situation – there will be more to it. My baseline best case scenario should include some level of dysfunction with bowel and bladder at the least. So that’s my new baseline.

Some of the most upsetting things from yesterday’s meeting…

Parker & Max will not get to meet their new little brother until he is OUT of NICU and on his way home. This is hard for us, as it was so wonderful to have Parker come meet Max at the birth center within 30 minutes of being born. We just have a new normal with this little guy.
Most likely, I won’t be able to breastfeed Colten until after his surgery. I can start pumping but he will be on glucose, water and electrolytes pre-surgery, possibly even antibiotics. Knowing how beneficial breastfeeding is, this tugs at my natural instincts and makes me cringe.
No one can stay with Colten overnight or “room-in”, and only parents are allowed in the NICU (grandparents has yet to be confirmed). This should’ve been a “duh” thought, but what made it real was that I would be recovering from my own surgery and wouldn’t be able to be next to him 24/7, as I’ve done with both other kids.

Some of the more informational, useful or positive things from the meeting…

Barring any other complications during the c-section, I should be allowed some skin-to-skin time with Colten prior to surgery. Surgery itself is NOT immediate, it will be within 1-2 days post-delivery. Much of that depends on his health and the medical team’s coordination of schedules.
We have the perfect-timing opportunity to meet other families with children diagnosed with Spina Bifida THIS weekend at the annual picnic Sparrow has for their patients. Three generous families have agreed to come a bit early to meet us, let us meet their kids, and share their own experiences with us. I think the reality of these encounters will be extremely difficult for us, but so very valuable in both the short and long runs.
If all goes well, the expected hospital stay for Colten will be 1-2 weeks. The entire time is spent in NICU, there is no downgrading to the pediatric unit. When he’s well enough to get out of NICU, he’s well enough to go home. In a way this is nice because then we’re in ONE place with the SAME team of nurses the entire time.

And finally, some of our realizations…

We both have pretty good backgrounds to hopefully provide Colten with the best life we can. Richard’s degree, experiences and education in Kinesiology will give us a leg-up on any physical obstacles we need to work with Colten on. My educational background and degree in Special Education will come in handy as well. We certainly have so much to learn, and most of it will come in bits and pieces as we discover Colten’s abilities over the years, yet we have a strong foundation.
Our current jobs provide us with extreme flexibility to be where we need to be for Colten and our other boys. Sure, NOT working will greatly impact our financial state, but being able to be flexible allows us to hopefully continue some work while providing the care needed to Colten and the upbringing needed by our other boys.
We have a great family network and circle of friends. They are already coming forward offering to help tend to Parker & Max while we get Colten healthy enough to come home. This will be a huge relief for us. It will be hard enough to be away from them so much and feeling guilty about all the time given to Colten, but we need to make it work so we can have all three little boys together in the end.

Today We Met Colten Robert

September 19, 2012 by Kate

Yesterday we had our first ultrasound for this pregnancy, at about 35.5 weeks along. We’ve had two other very healthy, natural pregnancies and births and saw no reason to need an ultrasound with this pregnancy (or the one prior!). However, this baby is presenting breech according to our midwife so off we were sent to consult with an OB/GYN and have an ultrasound done. Our hope was that even with a breech baby, if in the “right” breech position, we could attempt a hospital vaginal delivery. Or, we would see the baby was in a bad breech position and would have to do a c-section.

However, during a quick scan ultrasound, a mass in the lower uterine segment was noted. Two things went through our head: a second baby that had died early on in the pregnancy, or a cyst on me. The OB didn’t really expand so that’s what we left thinking. We still thought, “hey, if it’s not big or not bad, maybe the baby will end up turning and a natural delivery can still be feasible!”

So the doctor referred us to have a full diagnostic ultrasound done at Sparrow Hospital in Lansing – that we had done today. The only other prenatal ultrasound I have had was with our first son, Parker, at about 20 weeks gestation. Not a big deal. When you’re 35+ weeks pregnant though? Ultrasounds that last for 30+ minutes are not comfortable. Lots of pushing and prodding to get at measurements. And we barely could see the baby’s face because its hands/legs are up in front of it.

The ultrasound tech did her thing, then we waited a bit until the doctor came in. I got a little scolded for not having the complete blood-work that is typical in pregnancies and so we started off on kind of a wrong foot. We didn’t have detailed blood-work with either of our other pregnancies and saw no reason why this pregnancy would be different. Then she had me lay on the table so she could do some talking with us while doing an ultrasound again on the baby. Her first question at that point was “Do you know why you’re here today?”, and I started going into some long-winded story that apparently had no relevance to what she truly meant (I thought she was asking us because SHE didn’t know!). Richard interrupted me thankfully and said that yesterday’s ultrasound showed a mass in the lower uterine segment. Probably the first time he’s been more concise and to the point than me!

The doctor got right to the point herself, saying “We see that the mass is on the baby, not on you, and we think it’s Spina Bifida.” We were both caught very off-guard here as it never crossed our minds that this mass would be on the baby – we truly thought it would be a second baby or something on me. NEVER thought of something on or wrong with the baby. So we were instantly thrown into this realization. I was angry at first with her just coming out and saying that because it felt as if there was still a slight question of the accuracy of her diagnosis and she shouldn’t be just throwing that information around lightly. In fact, she is quite confident in the diagnosis and we proceeded to see more of what the ultrasound had to show us.

There are few things we know for sure, or even partially at this point. We know the cystic mass is coming off the bottom portion of the spine (the lower on the spine the better – less chance of paralysis). We can see that there is not a ton of fibers/nerves/bones wrapped up into the mass – this is good as if the spine/nerves are wrapped up in there, it would cause more issues with the surgery and recovery. We know the mass is about 10cm (about 4 inches). One foot appears to possibly be clubbed but it could just be how it’s tucked up by the head (baby is in pike position). While the cyst does cause a pull on the brain, in the cerebellum, it doesn’t appear to be excessive and there doesn’t seem to be fluid/swelling in the brain.

So what’s next? We have an appointment next week with a neonatology doctor, or ICU specialist. Another appointment will get scheduled with a pediatric cardiologist. This doc will do some sort of echocardio-ultrasound or something along those lines to check the health of the heart for surgery after birth. Then another appointment will be setup with the neurosurgery doctor that will perform the surgery after birth. And of course, weekly visits with the OB/perinatal specialist as well.

During the ultrasound, realizing all the unknowns that are coming our way, I decided then and there I didn’t really care if it was a boy or girl and the surprise didn’t mean as much to me anymore. So I asked the doctor to let us know the gender. So we are now excited (and a bit nervous) to welcome our third son, Colten Robert!