Sunday, May 4, 2014

5-4 Update

It has been a week or so since I (Alan) last typed an update.  Feels like forever has passed in a week, and frankly, the days have kind of blurred together.  I will apologize now if I repeat myself.

This was very much a week of diagnostics, trying to get a handle on Chloe's differences, and how best to care for her.  We began the week with Chloe having some redness around the area where her cord iv was placed (in her belly button), so there was a need to put in a PICC line.  A PICC line is a line that goes from her leg, up all the way to her heart to administer meds and take blood draws.  A line nurse made two attempts on Saturday.  Chloe got quite agitated from this, and so she had to give up and let her rest.  At this point, since she had been born, her breathing had been really fast, and the line attempt only agitated her further.  They decided to go ahead an put her on antibiotics to stave off infection at the belly button and try another PICC line on Sunday.

There was probably some echo cardiograms and sonograms, I think maybe of her kidneys and cranium at some point?   Again, days blurry....  On Sunday, a different line nurse tried another PICC line twice, and failed both times.  Each of these times was about an hour or so, and very hard on Chloe.  Because it was so hard on her, they decided that the next attempt would be by IR (Interventional Radiology).  This time they would try to place the line higher up on her leg and tunnel the access port down lower.  This attempt would have the benefit of very expensive machinery to see the blood vessels and the line to try to get it in.  The nurse and I got her ready to go and took her down.  We walked into a VERY expensive looking room and I signed the consent form for them to work on her and then headed back up to wait.  She got very cold from laying on the table under the machine, and it took her a while to warm back up when we got her upstairs.  We let her rest, knowing that the next day (Tuesday) would bring another time on a table to get her MRI.

At some point in the midst of this, we began to have discussions about her kidneys.  The nephrology team had difficulties getting a good picture of her kidneys.  The left was was indistinct and looked really small, and the right on was in the wrong place right over her bladder.  This is of particular concern since she needs kidneys that function well to have heart surgery (for sure she'll need surgery at 6 months).  They also had seen some air in her abdomen after the first feeding they tried, so there was concern that she might have some intestinal issues, so they ceased feeding her formula, and put her on strictly IV fluids.  The plan was to have a contrast done on her GI tract later in the week.

On Tuesday, we packed her up once again and took her down for the MRI.  Once again, she got very agitated and very cold.  She was pretty distressed for the rest of the night, and had a couple of "episodes" where she stopped breathing and had to be nudged to remind her.  This was quite concerning and began long, difficult discussions about ventilating her and what situations to do that in.  They also started her on some oxygen through a canulus (sp?) as the CO2 in her blood was creeping up.

Wednesday brought another test where we needed to pack her up and send her down to another very expensive looking room.  (Thank you church for the excellent health care you provide us, we're definitely using it this year!)  This time, the nurse was all over trying to keep her warm, with warm blankets, a heated pack (for lack of a better term) to put under her when she could, and last, she told the radiology room to crank the heat up to 80 degrees.  This test involved injecting contrast in through a catheter and seeing if any of the contrast refluxed back into the kidneys.  We were able to stay in the room this time, and so we stood, decked out in lead jackets and thyroid covers while the team reminded each other that if anyone started to feel lightheaded, to sit down.  It was a sauna in there!  So blessed that they went though that discomfort to try and keep her warm..  Mission success, her temp had not dropped at all when we got back up, and she was much less agitated.

She had more episodes through the night, and started freaking us out a bit.  Probably our lowest day was Wednesday with her just looking like she was getting worse.  The doctor decided that she really needed to know what those kidneys looked like, so that she would know if she could tolerate early surgery if needed.  She very reluctantly thought about having a CT scan.  We had really hard conversations where we cried and she (the doctor) cried, and it was a real bummer of a day.

The doctor called later that day and decided that she didn't want to subject Chloe to that much radiation (apparently a CT scan is a lot), and so she contacted the nephrology team and told them they needed to do another ultrasound to get a better look at her kidneys.

Thursday was very much a wait and see day.  On the good side, it was also a day of rest for Chloe.  Really this was the first day that she didn't have someone poking and prodding at her and putting her on a cold table to do a test of some kind.  The doctor dropped by our pod and said that after further discussions with the GI surgery team, she wasn't as concerned about intestinal issues as she thought they were, and the air pocket had disappeared, so it looked like maybe it was something that was just a newborn thing.  Chloe's blood tests were starting to look better, and the episodes were decreasing, so the doctor decided to push Chloe a bit and start her on feedings.

On Friday, the CV surgery team met with our doctor and decided that they would have to wait and see what her kidneys did to evaluate her for surgery later.  Nephrology wasn't able to find a kidney on her right side after another ultrasound, but did say that the kidney over the bladder looked good, and was functioning adequately, and improving in its function with each day.  At some point, our doctor wants a full body MRI to check and see if there is another kidney somewhere, but we are encouraged that the nephrology team seems to think that as Chloe grows, this one kidney looks like it might compensate to the point where surgery is possible.

The MRI looks like Chloe has some differences that will probably mean some learning differences, but there are no gaps or absences that would mean functional issues (like the brain lacking the part to tell her how to breathe).  She did fail her first hearing test, but so did every one of the mosaic trisomy 22 babies that we know on Facebook.  They all are able to hear (some with hearing aids to help).  She also had some differences with her eyes, and we'll have to see what that means as we go.  She did start physical therapy for one of her club feet, and at some point they will likely do some casting on her other foot to correct.  The cleft lip and palette are typically fixed at 6 months and a year, so they kind of dropped by to say they'd see us quite a bit later.

As Chloe had non testing days, and began to feed regularly, she really began to perk up.  She's had a couple of nights without any episodes, and she seems to be handling the feedings well.  We've been able to do cuddle times (Jodie is rocking Chloe as I type), and she just seems to be doing a little better each day.

We have our combined consultation on Monday, where they put all of the doctors and specialists in a room with us to try to chart a course for Chloe.  This is frankly more than a little intimidating and scary.  You can pray for us that we would continue to chart a positive course for Chloe and that we wouldn't feel hammered in this meeting.  After all of the bad days we had initially, the good days we have had make us a little nervous for the roller coaster to head back down (we've been on a roller coaster since December), so please pray that we would trust God fully as we navigate the NICU waters.

We have gotten to know lots of nurses here, and they have really loved on Chloe.  Several times we have come in to "craft time" from the night before where the nurses have put up decorations for Chloe.  We have been really blessed by our neonatologist as she has worked with us, and are a little sad that her two week rotation is ending on Monday, and we'll be with a different doctor.

So, prayer requests!  Please pray for Chloe, that she would grow.  Any discussion about heading home will revolve around her size being 7 or 8 pounds, which is a long way away frankly.  One of her MT22 buddies who was born the same size as her took 3 weeks just to get to 4 pounds.  Also, pray for her kidney that we know about, that it would grow in size and function and that it would be a "horseshoe" kidney.  I don't know what that means, but God does!  Also, I'm praying that they would find a second kidney somewhere, as that would be a great positive for her with surgeries in the months ahead.  Pray that her pulminary valve would shrink a bit, but not too much so they wouldn't have to do a banding surgery on her to limit the blood flow to her lungs.  Pray that she would continue to tolerate the feedings well, and that she would grow!

Pray that we would have peace through this process, that we would be the light of Christ in a very stressed and worried world (the NICU is a very tense and stressful place).  Pray that we would continue to get rest, and that Jodie would recover quickly from her C-Section.

We have been blessed by so many of you, and we continue to be amazed how many people have been praying for us and loving on us from near and far.  Thank you so much for your love.



  1. Thank you for the detailed update! We are regularly before the King of Kings on Chloe and your family's behalf -- thank you for the wonderful pictures and stories! Amazing to read that Jodie is rocking with Chloe as you type.

    Awesome God of the universe, protect and heal this sweet little girl and use her and her family for Your great glory.

  2. I am simply amazed by the strength and grace you are both showing as you navigate this journey. I was so honored to meet all three of you today and so grateful that you welcomed me into Chloe's special healing space. She is so beautiful. I will pray continue to pray for your specific requests. Love from Manhattan.....Heather