Update

Since I’ve last blogged….

(6/7/11)

Because her IV went bad and needed to come out, complications (not tolerating feeding yet needing fluids to stay hydrated) were harder to address.  After a visit from the PICC team for a PICC line, we decided not to try it outside of the OR.  She went in to the OR without an IV making it difficult for the anesthesia team to sedate her as safely.  After the PICC team tried without any luck, the surgeon stepped in to put one in the groin thinking this less invasive since the anesthesia team was manually bagging her.  Well, that made her leg turn blue, swell and grow hard…blood was getting to the leg, but not returning.  After treating her for a few days via the IV with IV nutrition and meds she had to go back to the OR (this time at least with an IV) so the surgeon could put in a central line in the chest.  This has worked well so far.

Other than that, she had to have a blood transfusion because of low red blood count (probably from loosing blood from tummy post-op, some she passed and some was drained) and a nephrologist has been monitoring her swelling and concerning lab levels.  The swelling is being treated with lasiks and ablumin, which is added to her IV nutrition.  As they draw labs and check the albumin in her blood each day, they adjust how much is given in her IV “food”.  They do that with other proteins, aminio acids, etc. each day.  Apparently her albumin levels were so low that it was indicative of a baby who has had inadaquate nutrition for quite some time, not a baby who hadn’t had nutrition for one week.  This is puzzling, since she was growing pre-op in length and weight.  The nephrologist cannot rule out kidney disease for sure until she can do some testing when she is getting full nutrition, but so far, she really doesn’t feel like it is a kidney problem.  So one question raised is why the low albumin levels?  Common culprits are nutrition or kidneys, but it doesn’t look like either in this case.  She is going to try and dig and connect the prenatal edema with what is happening now.  Her G-tube site is not healing well.  Probably in part because her nutrition has been so compromised.  She is battling a UTI.  The bacteria found, Pseudomonas,  is sort of unusual in this situation, but not unheard of.  It hasn’t been found in her blood, only her urine – which is very good.  Even with all of this, she has started to perk up a good bit.  Her pain level comes and goes.  She does use morphine daily, but it hasn’t been necessary to use on any type of regimen.  She’s on three different antibiotics, and has labs drawn all the time.  It’s amazing how they use her blood work to basically write the prescription for her IV nutrition each day.  Each day it is adjusted.  One of the nurses called it the most expensive meal you never eat.  That was encouraging.  Ha! We are working up to maintenance levels, which simply means she will be getting enough to maintain healthy nutrition levels.  We are almost there via the IV.  The next step will be slowly, as the gtube site heals, working to full nutrition of milk.  Going home has not been discussed.  It is going to take a while.

Today – 6/21/11

We came home last Wednesday!  She was sent home after slowly see-sawing from IV nutrition to getting breastmilk via a NJ tube.  An NJ (Nasojejunal) is the same as what she had before (NG) except it goes a little further down, past the tummy into the jejunal (intestines).  Our hopes were to get home (yeah!) and keep her at nutrition mainetnance levels for one week, let her tummy rest, G-tube site heal, and go back in a week to assess the situation.   Tomorrow is one week.  We will see the surgeon.  The nephrologist also wants to do a bladder reflux test to see if the bacteria found when she had the UTI is possibly caused by old urine relfluxing into the kidneys, then going back into the bladder.  Old urine grows bacteria, so could be a possible explanation for the type of bacteria found during her hospital stay.  She will also monitor her blood and urine levels when her nutrition is back up to par.  At birth Haddie Joy also had a very small cyst on one of her kidneys.  This was found in her first few days of life, but not alarming.  The nephrologist wants to explore this a little more.

Other than that Haddie Joy is doing pretty well.  She is struggling with teething and wanting the process of eating/nursing (she still can’t eat with her mouth).  I also believe she is a little gun shy.  It will take her a while to get used to people other than mom and dad.  In general she spends a great deal of the day fussing and crying.  I hope in time she will get better.  She is sleeping well, and that is a praise.  The continuous feeds and no meds have made it a little easier on Peter and I.

On a side note, Alex will only be here until Saturday.  He will be leaving for Texas where he will do a bit of training and then on the first of July he  and his brother Isaiah, along with several other youth/adults will board a plane to the Ukraine where he will do mission work for the rest of the month.  Sadly, we weren’t able to spend very much time together as a family – but we are excited for his oppurtunity!  Ethan is also on mission right now in Illinois and he will be serving in New Albany, Indiana the first week of July.  Please join us as we lift up his these groups  in prayer.

Thanks to everyone!!

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3 Responses to Update

  1. Nancy says:

    So good to hear how things are going. I hope your appointment with the surgeon went well today.
    Love you all!

  2. Thanks for the update! We’re still praying for your sweet baby girl and your family. I know you all are exhausted! We’ve dealt with a little of the urinary problems that you are talking about (but obviously yours is in the scope of a lot bigger medical picture), and it is no fun. Emily had to have the VCUG test done to check for urine refluxing to the kidneys when she was 4, and her urine culture has come back positive for pseudomonas on more than one occasion. We’ve only had to have the antibiotics for it once though; it was nasty stuff. It’s so neat to hear about the boys’ mission work; that’s really exciting! Praying for healing, strength, and miraculous energy for you right now!

  3. Trooppetrie says:

    still praying, praising for sleep, it makes such a difference. i had a PICC line when I was pregnant with my last because they could not get a IV. It was such a amazing life saver

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