The Long(er) Journey

The Journey So Far

September 10th: 18 Weeks, 2 Days- Woke up with bright red bleeding, went to ER diagnosed with PPROM
September 10th-12th-  In hospital bedrest for super hydration and antibiotics
September 12th- 15th- Full bedrest at home
September 15th: 19 Weeks- Referred to Mayo Clinic
September 16th- Seen at Mayo Clinic, Diagnosed with bilateral renal agenesis (no kidneys), no bladder, and severe placenta previa, advised to have an abortion
September 16th- 30th-  Light bedrest, no driving, required "supervision" to be alone

September 29th: 21 Weeks
September 30th-  Primary OB removes no driving restriction, views small amount of fluid on ultrasound, and sees 1 kidney
October 1st-  Call from the Mayo Clinic stating the believe that they may have misdiagnosed PPROM vs. Renal Agenesis, want to admit us at 23 weeks (viability).
October 2nd- Call from Mayo Clinic with genetic testing restults.... It's a Girl!!!  (And no trisomy or major genetic anomalies)
October 13th: 23 Weeks
October 14th- 28th- In hospital bedrest, Updated vaccinations in anticipation of a premature baby, consults with neonatology, anesthesia, etc, Steroids for lung development, Glucose screen negative
October 27th: 25 weeks, Ultrasound reveals a resolved placenta previa and excellent growth over previous two weeks, ultrasound confirms kidneys
October 28th- MRI reveals unresolved (still complete) placenta previa, tentatively confirms no kidneys or bladder but officially deemed *inconclusive* due to lack of fluid, home against medical advice

November 3rd: 26 Weeks
November 7th:  Meet with local OB and make the official determination to deliver at Mayo Clinic and develop a tentative plan
November 10th:  27 Weeks
November 17th:  28 Weeks

That brings us to now.  Yesterday we returned to the Mayo Clinic for the development of a prenatal care plan, delivery plan, and baby plan.   It has officially been decided (or finally realized in my opinion, since I've been saying this all along), that I am not going to suddenly go into labor.  We know that something is wrong with Siena, probably related to her kidneys and/or bladder but everyone is finally acknowledging that we really don't know what that is.   Since people are more interested in her than me, we will start with the Siena care plan.


Due to the lack of time without fluid it is unknown how Siena's lungs will respond at the time of birth.  It is fairly well agreed, however, that as we have passed the major risks of extreme prematurity (and anticipate passing more) the neonatologists will be able to provide enough breaking support to allow for her kidney and bladder function to be evaluated after birth.  In fact, yesterday they were even talking about waiting 2-3 days to do that!  The general consensus is that if lungs were the only issue they wouldn't even hesitate to give us fairly good odds in terms of a positive longterm outcome.   Obviously knowing there is a secondary problem and not knowing what it is makes the water much more murky in that regard, but I think everyone feels very positive about the plan.

They are smart people these neonatologists and it is quite clear they know what they are talking about.  From the beginning, knowing kidneys are involved, they will care for her a little bit differently (less hydration, more concentrated nutrition, prioritize umbilical IVs) to extend the time before poor kidney function becomes a concerning issue.   No one ever talks about bladder because I've been told that one can be surgically created if we get that far and it really is not present (since she's not producing urine it may well be there, just invisible since it is never full).  We even talked about pumping and possibly breastfeeding in those first hours/days!  They also brought up delayed cord clamping as something that they want to do in this case.


Moving backwards from the plan for Siena, the plan for birth is to have a scheduled C Section.  Everyone agrees this will be the least stressful for her.  At the time of birth we will have our perinatology team, the neonatology team prepared to execute the above plan, the palliative care team in the event we need to step backwards and reassess if she is not responding to breathing support, and our priest for baptism (provided he is in town..he is taking trips in both December and January so I'm hoping this falls in between..otherwise we will be hoping to arrange a priest through the chaplaincy at the hospital in advance).

Since the MRI was very clearly still previa, my perinatologist is fairly concerned about bleeding so she is going to plan ahead for this contingency and hope it doesn't come to pass.  This was the only downside of my appointment yesterday as she did say she has enough concern to prepare for a hysterectomy if it looks like the previa will still be in play at the time of delivery.   I took a lot of deep breaths and reminded myself we aren't there yet and we will worry about that if/when we get there.

Following delivery, I will need to stay on the OB floor initially.  Unfortunately the NICU is in another building and I was concerned that I would be separated from Siena for as much as half of her life.   They have assured me, however, that is not the case.  It is possible that after they have deemed me stable following surgery I can be transferred to another floor (general unit) in the same building as the NICU.  They also assured me that if it was 1:00 in the morning and they had to send nurses with me with IV pumps and anything else I was still attached to, if she was not doing well I would there.  They have experience in these things, and getting us together is a priority for them even if we aren't in the same building.  The nurse yesterday told me that even if when I wasn't with her, they expected me to call all the time so I was included in everything.

While We Wait

In the meantime, the priority is keeping me healthy and watching closely for any sign that she needs to come earlier than planned.  She is big enough they would consider delivering even now if it looked like the difference between being able to execute the above plan or not.  I will see my local OB weekly for biophysical profiles for the next 4 weeks and if at any point there is a concerning result, they will send us to Mayo for additional monitoring, testing, and possible delivery.

At 32 weeks (Mid December), I will go back to Mayo for a growth ultrasound, placenta ultrasound, and to set a delivery date.  If she is continuing to grow well we will aim for 36-37 weeks (Mid January).  If she is not growing well, we will increase to two BPPs/week and consider a closer delivery date (34 weeksish, Late December).  The main reasons for delivering sooner rather than later is that the risks of no fluid increase significantly the more she grows and as my cervix starts to dilate on its own.  Some of those risks are decreased growth, increased cord compression and prolapse risks, hemorrhage/bleeding (if previa continues) and quality of the placenta over time without the support of amniotic fluid.  The benefit to continuing the pregnancy is outweighed by the risk of her being stillborn or having another complication that prevents us from implementing the *Siena Plan*.

Onward, One Step At A Time

And so we keep going.  The major decisions for the next few steps have been made.   With lots of prayer, we continue to hope that our next decision involves a treatment plan for her kidneys and/or bladder.  If we get there, it means we will have had at least a few days to snuggle our daughter (well, oooh and aaah over and take pictures...holding will depend on how much breathing support she needs I think).

I admit that I can almost feel the weight of a tiny squishy newborn baby in my arms right now.  I have several friends (3 at least?) who have delivered baby girls within the time frame at the top of this post.  It is awkward sometimes to be with them (or see pictures) depending on what kind of day I am having, but mostly the pictures and babies remind me of the goal line.  I may not have any reason (although I definitely have the itch) to set up our baby stuff (which is fairly minimalistic anyways) or wash baby clothes and diapers, but I feel like we have a really good reason to believe this situation is not nearly as dire medically as we were lead to believe it was 10 (yes, 10!) weeks ago.


Mari and the family said...

Thank you for sharing the details of your life with us. While I'm sure you don't always feel it, I want you to know that you are handling all of this, what's going on with Siena, homeschooling a larger than average family, working on your master's and a husband who just completed a pretty awesome achievement, with the grace that I'm sure you've found in your faith. God calls us over and over again to be strong and courageous. That is exactly what you've done, though I'm sure there are days you would disagree with me. ;). You are a very dear friend and I want you to know that you are on my heart every day.

The Teska's said...

What a journey! Prayers as always!!