Saturday, April 26, 2014

Chloe's Birth Story

I (Alan) am sitting here next to Chloe's isolet now, watching the many lines and monitors keeping track of her, so I thought it would be good to let you all know how yesterday went.

Yesterday, the Lord decided to continue our Master's course in understanding that we are not in control and His plans are not our plans.  As you know, our plan was to come in yesterday (Friday) for one last ultrasound to try to get a good feel for what issues she would have when she was born, stay through the weekend, and then deliver first thing Monday morning.

After saying goodbye to the kids, we drove over in the morning for our appointment at 11:00.  We were early, and the appointment was late, so after sitting in the waiting room for a long time, we headed back for the ultrasound.  Really the two goals for the ultrasound were to do a BPP (biophysical profile) and take a look at heart, kidneys etc..  Chloe passed the first three parts of the BPP (breathing, whole body movements, and tone) right off the bat, and so the sonotech settled into taking images of her various organs.  The very last thing she did was to check the final part of the BPP, which is amniotic fluid levels.  The sonotech went on a fluid hunt, and wasn't having much luck (having just had a BPP Monday, we knew this was odd).  The most she was able to find was a pocket with 3.8 cm3 of fluid.  The minimum to pass a BPP is 5, and last Monday Jodie was at 6.8.  In a normal situation, they would probably hook up an IV for Jodie to hydrate her and see if they could get the fluid levels back up, but since we were planning on delivering on Monday (the 28th) anyway, the doctors recommended we deliver now.

Jodie and I had finished breakfast on the drive at 8:30, and the anesthesiologist wanted her to have not eaten for 6 hours, so they planned to begin the C-Section at 2:30.  Thus began a flurry of activity to prep and get ready for surgery and our little baby to arrive.  At one point (at 2?) the doctor was explaining to me how the process would work.  The operating room is adjoined to a room to care for newborns, and so after Chloe was born, I could go over to take pictures and watch her.  To this I responded, "Um, I don't have the camera." The doctor, surprised, asked why not.  I responded, "We came in for an ultrasound...."  She sent me down to the car to grab the camera assuring me they wouldn't wheel Jodie back without me.

Having had two prior C-Sections, the C-Section did seem to take longer, and then Chloe was born.  She let out one quick little cry, which was so good to hear, and they hustled me over to the neonatal room.  The doctor let me know that her blood oxygen levels were low, and so they would be starting Chloe on the drug to keep her ductus spinosis (sp?) open.  Chloe protested much as they worked to get her cleaned up, and started to check her out.  They put in her umbilical IV line, and by that point her blood oxygen levels had come up to a good level, so they didn't have to administer the drug immediately.  This means that currently, she is only receiving some iv fluids, and she's not on any medication at all!

Chloe began to grunt, which I'm hoping means something to lots of you, but I'm not sure I can reexplain what was happening in medical terms, but long story short, she needed time on a CPAP machine.  Due to her cleft palate, they weren't able to do the nose oxygen, and she super small, so they found a mask that would work for her, and the nurse held the mask there for 45-60 minutes to help her breathe while they continued to work.  They did have a discussion in there about what they would do for a mask if long term was needed since she is too small for the normal mask.

The cardiology team came in and did sonograms of her heart, which took about 30 minutes.  Everything that was diagnosed via ultrasound was confirmed by the eco-cardiogram.  At this point, it looks like she will be able to go the 6 months without the initial heart surgery until they do the first of the two that she needed no matter what.  After the cardiology team left (much to the relief of the nurses), they continued to evaluate Chloe to see if any interventions were needed.  After a while, she began to cry into the mask, which told the nurses that she didn't need the CPAP anymore, and she hasn't needed it since.

During all of this, the doctors continued to stitch Jodie up.  There was extra internal scarring from the previous C-Sections, so it took them quite a bit longer than a normal procedure, but finally got Jodie stitched up and wheeled back to the room to begin recovery.  After the doctor and nurses finished all of their checks with Chloe (maybe an hour or longer later), they wheeled her into Jodie's room so that Jodie could see her.  In what was a delicate dance of isolet, hospital bed, Chloe's wires and tubes, Jodie's wires and tubes and about 5 nurses, they managed to let Jodie hold Chloe for a few minutes.  I haven't been able to hold her, and probably won't for several weeks.  When Jodie asks why not, I tell her, "Did you see how complicated it was for you to hold her???"

Jodie is recovering well, though not quite as fast as after Abi's C-Section, so we would ask for your prayers that she would recover quickly so that she can come and be by Chloe's side as soon as possible.  We were blessed that there were no unexpected concerns with Chloe.  She does have a cleft palate, which will probably prevent her from feeding, so at some point, it is likely that they will need to put in a G-tube to feed her.  She has two clubbed feet, but apparently they both looked correctable, one with a cast here in a couple of days, and the other with some physical therapy from the nurses.

All of the information they had gathered about her heart was accurate, so if you would like to read more about her condition, you can see more here.  Pray that her blood oxygen levels continue to be good as the ductus spinosis closes, and that she will not be under-oxygenated or over-oxygenated.  They will check on her kidneys here in a couple of days to make sure they they are functioning correctly (there was some concern from an ultrasound 2 months ago).  Also, they will begin working though tests and evaluations to check for possible symptoms from a very long list of possibilities for Mosaic Trisomy 22 babies.

Pray that she grow!!! She's very tiny (3 pounds 7 ounces at birth), and will need to start putting on some weight when they put in the G-tube.  The more she grows, the better.  Much like the CPAP machine issues at the beginning, her small size limits options sometimes, and so every pound helps!!!  Pray for the kids in Manhattan, who I assume are doing fine.... :-D  Pray for doctors and nurses, that they would have wisdom as they work with Chloe, and that we would have good experiences there.

We thank you so much for all of your prayers and support that brought us to this point.  I was amazed to see when Terri posted on the Our Chloe Elizabeth page yesterday that over 2100 people had seen the post (Facebook offered to advertise to get the views higher...), and we know that so many people have been praying, that I'm not super shocked that she's doing so well for how small she is.

The doctors just came by, and gave a quick update.  In the next couple of days, we will see the orthopedic team for her cleft palate and club feet, and a sono of her kidneys and a sono of her cranium, so we'll learn a lot hopefully in the next couple of days.  They are going to try to feed her a little bit today with a regular feeding tube, so pray she tolerates that well.

Again, thank you all so much, and we'll keep you up to date!


  1. Thank you for sharing your story with us! We hold all of you in constant prayer. We give all glory to God for beautiful Chloe.

  2. Thank You for the update and for sharing your story! We will continue to pray for Jodie, so that she can soon be by Chloe's bedside too! Praises that she has 6 mths to put on wait before heart surgery is needed!

  3. Great post Alan, very play-by-play. Please let Jodie know that we are praying for her recovery and of course for precious Chloe. You may be on your own though. ;) Just kidding.

  4. Thanks so much for the update and all the information so we can pray specifically. Welcome, sweet Chloe!

  5. Thanks for the updates and details! So proud of your rock star graduating from CPAP! So since the drive isn't placed get, are they feeding her thru an ng tube or is she just getting tpn thru her umbilical lines? And PS. Isolette is spelled with a te on the end ;) But all in all good work on the medical jargon, daddy-o! Praying everyday this journey with you! Celebrating that she is doing so well!

  6. Congratulations! We keep praying. DO hold her if they will let you. We did kangaroo care (KC) with our preemie twins (tubes, wires and all) and it improved their stats each time. It has long term benefits as well and reduces stress. Go to then "more options" tab, then "education" tab for info to explain the many benefits and get video instructions.