PagesThe Hospital: Trying to save our babies, moment by moment --via Caring Bridge

The Hospital: Trying to save our babies, moment by moment --via Caring Bridge

This page includes all of our Caring Bridge updates.  For the most part R wrote them except where it says I did, she even wrote the one that talks about her in third person, she really didn’t know why she did that all of a sudden.  We reference several doctors – Dr. B is our MFM specialist and our key doctor, she supervises the “hospitalists” which work a 24 hour shift.  There were four – I think we only reference Dr. C (who loved to do ultrasounds for us – long ones with lots of pictures) and Dr. T.
Monday, 6pm, January 12th
We just had an ultrasound and saw both S and G.  Their heartbeats are at 153 and 156.  They are both wiggling around a lot, but S is definitely more cramped and has much less amniotic fluid.  There are a couple of fluid pockets so it is possible that she has enough for lung development (critical from 18 - 22 weeks), but her head is down into Junebug’s cervix which is, of course, not ideal.  We have decided against selective reduction predominantly because the travel would be too stressful considering S's positioning, but also because it doesn't seem like it increases G's chances enough to make it worth it.  Right now they are giving him a 50 - 65% chance with very little chance for S and her positioning may induce labor that would be impossible to stop.  At 19 weeks, they would not survive.  We found out this evening that because of S's positioning we will be remaining in the hospital (we thought we were checking out tomorrow morning) - at this point - for the unforeseen future.  We are hoping for no labor at this point.
00:20, January 13th
They have the delivery cart ready down the hall as they now believe S will come soon, but Junebug has not actively started labor.  It may be sometime during the night or weeks from now, but they feel most likely it will happen soon. They gave Junebug something to sleep so she fell asleep watching the Vicar of Dibley on her iPad. The doctor and nurse had the conversation about what our choices are for S once she is delivered.  It was the hardest conversation either of us has ever had - and we needed to take a break at one point.  They left and we took a few minutes before making some decisions.  They will try to stop labor after S comes with something that will make Junebug fairly sick - but we are hoping that S will move away from the cervix and find a new comfortable position and we will have a miracle in both babies hanging on - but she continues to lose amniotic fluid. Junebug feels them moving a lot and I have felt both of them a couple times.  At this point, we would prefer that we go into labor rather than S suffering at all due to the loss of amniotic fluid. They tell us that the cerebral cortex is not developed so suffering is not the same for her - but it is for us.

Our friends sent us a cute picture of K - who apparently is making wide berths around their cat. We are so grateful that they are taking good care of her.  We've had a lot of love from friends close by and family and friends from afar and it feels really nice to be loved.  Thank you to everyone - we need it.

Thank you!
For those who are just getting the information - I'm sorry - it's not the cheeriest e-mails you've ever received from us.

Quick story:  We went in for our regular 18 week ultrasound last Tuesday and the babies looked amazing - healthy organs, developing bones, heartbeats - in short - they are perfect.  We found out we are having a little boy and a little girl.  G [Two middle Names] [Long Hyphenated Last Name] and S [Two middle Names] [Long Hyphenated Last Name].

Yes, yes - we wanted them to have the longest names absolutely possible!!  We just like the names G and S - but [long explanation of one family name from each of our families for each of our beautiful children]

However they also discovered that Junebug was dilated. They rushed us to labor and delivery and it has been a terrible roller coaster ever since. Basically, we have several factors that put us at the edge of medical knowledge:  sludge, cervical insufficiency (followed by a cerclage put in on Wednesday and removed Sunday after S's membrane ruptured Saturday morning).  Basically - including the other journal entries that brings everyone on to the same page.

Our friends and family have been amazing rallying around us - both here and from afar.  We got a cute picture of our dog, K - who is staying with some friends. Apparently K is giving their cat a wide berth!  This has been so hard and we wouldn't be making it without all of your love and support. Thank you.

January 13, 11:30 am

This is Junebug -
I can feel G wiggling a lot this morning, he gets his head pushed over by my right ribs and last night when our regular OB was here I thought I could feel his head and she confirmed that's what it was. He tends to stretch our horizontally and get good wiggling in. I can feel S really low still today, not nearly as much movement but flickers here and there - her head has been pretty secured in place so it's just her little arms and legs that I can feel. It's both loving and heartbreaking to feel S especially. I continue to lose amniotic fluid and have some lower belly pain. When the 24 hr. doc gets a break he's going to do another ultrasound so we'll get to take a look at them.  There's nothing really diagnostic about the ultrasound at this point, I think they are just trying to do whatever they can to help us feel even a little bit better/more informed.

Tuesday, Jan 13th, 5:15pm

R left the hospital for about an hour and a half to step into her class for 10 minutes before heading to get a flu shot which Dr. B said she had to get as soon as possible. R was also up until around 4am preparing for class - it was a good distraction because last night was so rough.

We're on an upswing at the moment. Dr. T did an ultrasound around 5pm and S has a lot more fluid around her (a 2x2cm pocket is considered good and she was at 5x3!!). Her head is still wedged into Junebug’s cervix and they still feel like she could begin delivery anytime, but everyone seems much less amped up and today has been much calmer.

We feel like if some of you REALLY focused on S floating up out of the cervix and relocating her head (Junebug’s mom - is picturing S as a child feeling most comfortable wearing hats) for a while, while some of you REALLY focus on no infection, some of you REALLY focusing on S producing enough fluid (Junebug is drinking lots of fluid), and some of you REALLY focusing on Junebug not delivering for at least seven weeks would get us to 26 weeks which would give S and G a lot greater chance of surviving.

So - it's moment by moment here.  Hopefully we have a boring night and morning and R goes to work for a while tomorrow.

Thanks for your love.

January 14, 2 pm

It's been a relative uneventful night and morning, my bed rest was upped a little bit so I am moving around a little less than before--it's kind of remarkable that I *can* move around less.  I'm feeling the exhaustion of the emotional aspect of what has been going on and the constant interrupted sleep - so pretty quite today.  For my big excitement, I may take a shower this evening, in a special chair...  It's really nice to read all of your supportive comments and to feel love coming in from across the country for us all.

Wednesday, Jan 14, 8:30pm

NOTE: Pictures removed for identifying information on the screen.  Picture two beautiful babies on a super high quality 2D ultrasound.

Thought you might want to see little S and G.  This is from our 18 week ultrasound (we are now at 19 weeks, four days).  The pictures are also from that ultrasound.  S is head down and G is hanging out on his back.

We have been showered with love and food and Junebug has an exciting evening planned. She is allowed to take a sit down shower - maximum of 15 minutes.We're tired - the uneventfulness makes us both realize that more clearly - but we are really grateful for a quiet day.  G is moving around a lot.  S is moving too - but it is harder for Junebug to feel her because she is down so low.  The ultrasound this afternoon was unclear whether S has moved up a little or whether the cervix has dilated more.  However - they did take the angel and leaf with a raindrop postcards off of our door (those indicated that this was a sensitive room).

Thursday, Jan 15th, 1:30pm

We had a rough night - with odd cramping that kept us up through most of the night. Junebug thinks the babies were moving around and possibly hitting sensitive nerves but during the night they thought it might be labor coming on or the onset of an infection.  She was in a lot of pain and could not get comfortable.  We just got the blood work back and CBC and CRP were good and Junebug’s abdomen is much less sensitive today than it was in the night so that seems like a good sign that it is not an infection - because otherwise her abdomen would get more and more sensitive.  She had a massage on her lower back and shoulders to help combat the bed rest woes and an occupational therapist is coming shortly to give her exercises that will not rely on abdominal muscles or have any chance of inducing labor.  She is considering taking up knitting - but we are open to any suggestions on how to keep engaged while on bed rest.  Reading has been a challenge for her because neither of us feel like our brains are functioning quite up to par - but she did start reading a book last night - so that seems like a good sign too!

Friday, Jan 16, 2 pm

We had a much less eventful night, cramping/contractions only from 4-5 ish (am) in a way that woke me up. Then we had our ultrasound just a little bit ago and S's whole body is inside where my cervix should be. It's really hard news. We were also moved from Labor and Delivery to Antepartum which is jarring, any kind of change feels really hard right now.  I liked knowing if something went wrong we were already in labor and delivery so care could be given super quickly.  I also understand that they might need the bed for someone who needs it right now.  I have had mild cramping with small waves of medium all day, likely b/c of S's position.

Friday, January 16, 10:30 pm

I have continued to have cramping throughout the day and now have more bleeding. While they can never know timing precisely, Dr. C thinks S will deliver within the next 36 hours.  We have spent the last hour or so getting everything ready/reviewing with the dr., the plan, the meds, etc.  I am still not having full uterine contractions so that's a good sign for G.

Saturday, Jan 17th at 4pm

They delivered S [whole name] at 11:35am.  She was almost 10oz.  They put her on Junebug’s chest and she was moving, heart beating and making little sounds.  She was absolutely perfect, but had slid all the way through the cervix - so they delivered her without much trouble - no pushing or recognizable contractions.  We told her we love her and will for our whole lives - our sweet little daughter.  We put on the James Taylor song, "You Can Close Your Eyes" (Junebug’s childhood lullaby her mom would sing her) and sang to her.  A volunteer professional photographer came in to take pictures - and he was so nice.  We laid with her until around 2:30 then I took her in my hands to hold her for a few minutes before they took her away. They took handprints and footprints - she has Junebug’s funny little curved baby toe on both feet.

They started giving Junebug the magnesium before the delivery.  It was all very quick - they came in to do the morning ultrasound at 10 and then the whirlwind started.  We are back over in labor and delivery.  The magnesium is making Junebug really feverish and kind of out of it.  G has shifted lower and is kicking his foot through Junebug’s cervix - it's not the best thing that it could have happened at this point.  Her cervix did close up right after S was delivered but is now back open

Monday, Jan 19th 9:30pm

I have been working on this journal update for over 24 hours - partially because it has been way too eventful to actually get an update posted and then I finished it and the hospital server timed out.  So now I am trying to recreate what I wrote.

Sunday, 8:30pm:  Dr. B spent a day thinking about our case while cross-country skiing and thought that if we weren't having contractions then why wouldn't we just go ahead with the cerclage - because if G slipped down into the cervix that would be it for him too.  She came in this afternoon around 4pm and did an ultrasound.  It looked like G's foot was through the cervix and she decided to immediately go into surgery.  The magnesium sulfate has been really hard on Junebug so she hadn't been eating much so she could handle anesthesia.  They prepped her and she was in the operating room by 5pm.  Dr. B said the cerclage went really well - she was "proud of it" and apparently made a positive exclamation during surgery (per the nurse anesthetist).  Side note - Junebug would prefer never to be awake during surgery again.  She just doesn't want to know.  We have been thinking that we will go hiking in Glacier National Park backcountry with G in a back pack carrier and S's ashes.  We want to go to a beautiful place that we love.  During the summer - when we would go - it is 180 degree sloping hillside of yellow and purple wildflowers and 180 degrees of spectacular valley (you can't see the bottom!) and white capped mountain views.  We have to make a decision about a funeral home - but we are not quite ready to do that yet.  It is heartbreaking but we are trying to stay calm and focused on helping G live

Monday, 4:30am:   Junebug got really sick from all the drugs and not eating after the surgery.  She's finally settling down - but the morphine is keeping her alert (we thought). She starts to fall asleep and then jerks awake. Odd reaction for sure - but it sort of happened the other day as well.  It makes her groggy, but super chatty and a little jumpy.  At 8:45 am we actually found out that the feeling was from fluid in her lungs.  Dr. B heard crackling in her lungs (also from the magnesium).  Her body was not letting her go to sleep because she might suffocate! They gave her Lasix and within 30 minutes she was breathing better and getting rid of a lot of liquid. Around midnight the nurse was concerned that Junebug’s catheter wasn't filling enough. She did a bladder scan and decided she had to put in a new catheter.  It took three hours for them to find the equipment they needed and then when she replaced the catheter it only filled a little.  She hemmed and hawed and we said that she needed to wake the doctor immediately.  The doc came in and did an ultrasound and the bladder was empty.  Apparently bladder scans read any fluid - so the nurse was reading the amniotic fluid as urine and Junebug got a catheter she didn't need!! Plus extra stress and less rest. Overall our care has been amazing - we've just had a couple challenging nurse situations.  When you've been here for two weeks you start to meet a lot of the team.  We definitely have our favorites and folks we would avoid!

8:45am  They did an ultrasound and the cerclage and G looked great.  Dr. B went back to her office and we changed rooms because of construction noise.  As soon as we got into that room G's membrane ruptured!  Junebug was so out of it from the mag that she didn't even really realize. I knew immediately what it was and they tested it for amniotic fluid and it was positive.  We knew it was bad because Dr. B left her office to come back and tell us. The cerclage would come out and the virtually inevitable would happen.  They stopped the mag because there was no longer a need to stop the contractions and they scheduled the surgery for 3pm.  It was absolutely crushing and the most terrible moment of our lives - we were losing both of our children within three days.  We were ready to sell our house, quit our jobs and start a new life because we could not conceptualize how to move forward.

Noon:   Dr. B came back and said she had been thinking about options and wanted to be absolutely sure that the membrane ruptured.  She did an ultrasound and his fluid looked good so she asked if were game to do a dye test.  Absolutely!  They did an amnio - pulled fluid to test for infection and shot in blue dye.  Junebug put in a tampon and then we had to wait for four hours to see if the blue dye came out on the tampon.  It was the hardest four hours - we wanted to be hopeful - but felt fairly sure that this was it. Everyone congregated for the "Great Tampon Reveal" at 4:30pm.  NO BLUE!!! G's membrane wasn't ruptured and the first tests came back negative for infection.  There were high fives and hugs between doctors and nurses in the room and down the hall.  Our beautiful healthy, little boy was swimming in blue dye which he and Junebug will process out of their systems.  We are so grateful to our medical team.

10:30pm:  Junebug ate chicken noodle soup around 5pm - her first food in about three days and then we moved back to our anti-partum room.  Junebug immediately fell asleep for an hour and a half until the nurse came in for meds and vitals.  She then took a shower and ate some more soup and promptly fell back asleep.  We will see the nurse every couple hours for various things through the night - and we couldn't be more relieved that the care is so mundane tonight.  If all goes well tomorrow we will be heading home on Wednesday and hoping for many more weeks of healthy development time for G before we welcome him to the world.

Thank you all so much for all of your prayers, thoughts and love - we feel wrapped in love and we really need it to make it through this.

Tuesday, Jan 20th at 8pm

The exciting news is that we've had a very quiet day.  G looks good in there.  His heart rate is back up (from 135/140 to 154) and he is a lot more active.  The mag slows him down too. We finally mustered up the courage to fill out the birth certificate and make arrangements for S's cremation.  Junebug slept a lot and we should have a relatively quiet night because Junebug is hooked up to ZERO machines!!!  It looks like we will be heading home tomorrow afternoon.

Wednesday, Jan 21st, 6am

Just kidding about going home. Another rough night. We'll hopefully know more in an hour or so when Dr. B gets here at 7ish. She's on a medication to stop contractions and it's sort of working, sort of not working.

Thursday, Jan 22, 10:30am

It's a little hard to believe that we've been here to two and a half weeks now! We're coming up Saturday on the 21 week mark.  We slept through most of the night - just waking up for vitals, medications and a couple times for contractions.  The medications are definitely helping.  She's still having contractions, but they are a little less often and definitely less painful.  We would like it if the medications were working a little more effectively so they are keeping Junebug at least through the weekend to do some experimentation with taking her off one thing and maybe putting her on something else.  They think the contractions are probably stimulated by the blood vessels leaking from S's placenta shrinking inside the uterus.  We had a friend remind us last night that being an only child is it's own great thing and that felt reassuring for G.  Our job will be not to spoil him and help him have good relationships with his cousins, other family and friends.

Junebug is definitely eating more and she's holding a conversation - so things are definitely more stable.

Thursday, Jan 22nd, 12:30

Dr. B came back to do another ultrasound on a different machine to check that G's ductus is not being impacted by the indomethacin - one of the contraction medications.  Everything looks good.

I looked back at this morning's post and realized that my grammar and proofreading is atrocious - so please read graciously.  Perhaps my brain will be fully functional after a couple more night's sleep.  The massage therapist is coming in a few minutes to give Junebug a massage and then perhaps we'll take a nap.  Later - an exciting outing to the courtyard, perhaps…

Friday, Jan 23rd, 12:30

We didn't get to sleep until after 4am due to increasing contractions - so today is another tired day.  They increased dosages and switched up the medications throughout the night and ultimately got the contractions down from one every four to six minutes to three an hour. One of the medications is for high blood pressure and it is making Junebug pretty wobbly.  There is significant bleeding (to us) that seems to be causing the uterine irritability and contributing to the contractions.  The doctors tell us that is to be expected and that "a lot" of blood means bleeding on the floor.  At least we're not at that point.  Some friends dropped off movies and we have Mary Poppins on in the background right now while I am trying to catch up on work a little and Junebug is strapped to the TOCO (contraction monitor).  They scanned G this morning and his fluid looks good, heart rate is good, and the cerclage is holding up - the cervix might even be a little longer, but that seems to be a little scattershot in terms of measurement.

Junebug’s sister is coming over in a bit and I am going to try to get out for a quick run - which may kill me because I haven't done much of anything but sit and be stressed and not sleep for about three weeks - but I think it will be good for me even if I just go a short distance.  The sun is actually out today - so perhaps we'll make it to the courtyard today!  Yesterday ended up just being too dreary and cold for an outing.   I also brought in some forsythia branches which I am trying to force bloom.  Apparently that takes about a week - but it looks like we'll be here.

Saturday, Jan 24th at 3pm

21 weeks!  In the ultrasound today G was using his placenta as a pillow - so cute!  Still lots of fluid and the cerclage looks good.

Apparently we're just not really meant to sleep at night.  Junebug was in a lot of pain throughout yesterday afternoon and until 3:30am - so we were up the whole time.  Finally, she decided she would take a pain medication and it relaxed her enough to sleep through most of the contractions.  We both got about four solid hours.  She's been pretty calm today.  The contractions are increasing a little - but she's due for her next contraction medication at 3:30pm so hopefully that will keep them under control.

Because of her pain yesterday she didn't make it out - but I did get out for a run.  I was definitely feeling the fact that I've done no physical activity for three weeks but it was great to be out and running in the foothills.  She's been reading a bit which is a great sign and she just made an announcement that "the entertainment here is over" and then lowered the head of her bed for a nap.

Monday, Jan 26th at 5pm

We are heading home!  Dr. B came by to give us our last words of wisdom - basically that Junebug needs to set her own limits. It feels a little scary to be leaving, but we'll be back in for an appointment on Thursday to check in and then, hopefully, we'll just be going once a week until 28+ weeks. Junebug took a trip to the cafeteria today and it seemed to stimulate a few contractions so she definitely has to take it easy.  We have a wheelchair being delivered so we are going to try and get her out for walks - I got a shower chair and some friends are bringing over a recliner so she can change positions from just laying on the sofa.  G has been pretty active - but his feet seem to stay close to the cerclage so every time he kicks or pushes off to change position it really hurts Junebug.  She's on about five medications!

We chose a beautiful little Cedar box for S's ashes today - a local guy makes them.  The woman from the Cremation Society was really nice to meet us at the hospital so we don't have to go to the funeral home until we are picking up her ashes. I might have already said this, but after G is born we are planning to get tattoos of S's tiny little feet on our chest close to our heart with her name.  One of our nurses gave us the idea.

It is both a sad and hopeful day.

Thursday, January 29th

Junebug started cramping/contracting around 6 or 7 last night. She took two ambien and two norco and the pain came right through it (this had worked another night in the hospital). She was contracting every three minutes. We finally called the hospitalist around 2am and said what was going on and, of course, they said to come in. They did an ultrasound and thought things looked good and the contractions did ease up a little bit. Dr. B did an ultrasound on her fancy machine at around 11am and the cervix is shortened and the cerclage is just hanging on by a thread.

It is now 6:30 and the cerclage has failed and G's water broke. We are losing our son too. Junebug just got an epidural and they are preparing for the delivery

Friday, January 30th Noon

We just made arrangements with the cremation society. G and S will be together in the same cedar box. Our beautiful, perfect baby boy was born at 6:54 pm. He was strong- moving a lot. They put him on Junebug’s chest and he held her thumb with his little tiny hand. He tried to take breaths in and his heart beat for almost two hours. He had Junebugica's chin and her crazy baby toe on his right foot.

We are not even sure how to go home since we bought our house for our children. We are going moment by moment.

Pathology Results, February 5th

We met with Dr. B today. She texted on Tuesday to tell us the path results were in, that she set up an appointment for Thursday and offered to speak with us on the phone if we wanted to talk before then, but we felt that was a conversation we wanted to have in person.  I felt that there must have been something on the path report because she agreed and said that it would be a difficult conversation to have via phone.

As has been consistent since this began, she was professional, caring and generous. We spent an hour talking to her and then she told us one of the other hospitalists had been wanting to touch base with us - so she came over and we all talked for another 30 minutes.

Basically - our babies had an infection - acute chorioamnionitis - stage 3 for S and stage 1 for G. Despite all the tests we did - infections can "hide" in the membranes - and that is what happened to us.  None of the million and one antibiotics Junebug took could touch it. If they had survived for longer we may have had to make difficult decisions about resuscitation and they would likely have respiratory and neurologic challenges. This does not make our loss any easier, but it helps to know that we did everything we possibly could have done- and more - and they were just not going to make it.  Also - because we did not know earlier we were able to experience S's kicks and then two more weeks of G cruising everywhere around Junebug's belly. He would stick his butt out and then his head out or his whole back - he was so active. We hold on to those moments with them because we have so few.  Dr.B also shared with us that she had a few restless nights going through whether she missed something or could have done something else so it gave her a sense of peace that she did everything she could have done as well.  This made us feel even more that she really cares for us and for S and G.

We are still feeling like we are moving moment-to-moment and a bit foggy, but I taught on Wednesday and we both took a shower today.  We will start to make some plans for a service and get up the courage to pick up their ashes.  In the meantime we are starting a small ritual to light a candle for each of them in the evening and the first night we read the following poem:

“We Did Not Want It Easy”
Adapted from a poem by Anna McKenzie in Laughter, Silence& Shouting: An Anthology of Women’s Prayers. Edited by Kathy Keay

We did not want it easy,
But we did not contemplate
That it would be quite this hard,
This long, this lonely.
So, if we are to be turned inside out,
And upside down,
With even our pockets shaken
Just to check what’s rattling
And left behind,
We hope that you will keep faith with us,
And we with you,
Holding our hands as we weep,
Giving us strength to continue,
And showing us beacons
Along the way
To becoming new.

Thanks to all of you for your love and support for us and for S and G.

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