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Archive for May, 2012

…we are bittersweetly bringing Keltie home with us today!! It is sad to leave Colton behind, but we are thrilled to have our baby girl home with us.

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Well, it’s been a while since the last update and it’s been a bit insane to say the least. 

Last Monday was the usual dreaded eye exam.  And it ended up being one of the worst days since the twins were really sick and little.  Keltie’s ROP progressed to Stage 3 in one of her eyes and the doctor wanted her to have a second opinion up at Boston’s Children’s Hospital (BCH).  Colton’s spells had reached the point where they stopped feeding him by mouth and put his feeding tube back in because the spells were so bad and so frequent.  With that, he was also ordered to go to BCH for a swallow study (his eyes were still Stage 2).  So on Monday, we packed up both of their things and were discharged from South Shore Hospital (SSH) and both babies were taken by separate ambulances to Boston.  It was an emotional nightmare.  I am so grateful, though, that one of their primary nurses, Fran, who wasn’t even working in the NICU on Monday agreed to transport them for us.  Fran came in to check on them during a break in her inservice training and I burst into tears.  I begged her to be the transport nurse if they went on Tuesday and she got right up and said she was going to do it that day.  And she did.  And I owe her the small amount of sanity I had left – it meant so much to us that she went above and beyond.  She’s so special to us and our kids.

Tuesday, Keltie had her eye exam at BCH and their ophthalmology team agreed with the doctor that it was Stage 3, but she was “pre-plus disease” which means that she is not in need of surgery at this point.  They took some amazing pictures of her eyes and showed both Chris and I what ROP looked like, etc…  Colton had his swallow study that afternoon and it showed that he was aspirating on regular breast milk thickness and nectar thickness, but that he was safe for the most part on honey thick feeds.  So the plan was for me to return Wednesday morning and feed him on the thickened feeds (and you can’t safely thicken breast milk until they are 44 weeks old, so he is now on all formula feeds thickened with rice cereal) with the Feeding Team watching to determine how long he could handle the thickened feeds.  The concern was him burning too many calories trying to suck the thick feeds and tiring out, so they prepared us that he may only be able to take 10mLs of his feed (full feeds are 60-70mLs).  Little did they know my son…

Wednesday morning I arrived and did Colton’s feed.  He finished the entire thing in 20-25 minutes no problem.  That’s my boy!  So, they were comfortable saying he could do full feeds by mouth as long as he did it within 20-25 minutes.  Colton was happy about that!  Both babies were scheduled to have surgical consult at SSH before they left for their hernias, so they did this at BCH and with Keltie they were concerned about the “hardness” of her “hernia”.  So, they schedule an u/s on her hernia to get a better look at it.  Come to find out…her left ovary had made its way into her inguinal canal and that’s what they were feeling!  The surgery team came up to speak with me and explained that due to the nature of the organ being in the canal, they had to do surgery within 24-48 hours.  I was petrified.  They were able to push the ovary back up (with Keltie screaming – the poor thing!) so they were okay waiting until Thursday to do the surgery.  That started a flurry of activity and me meeting with the anesthesiologist, surgeon team, etc….  I couldn’t believe my little 5lb miracle was going to have to be put under for surgery and I was so afraid that it was going to impact her progress with her breathing and being off of any breathing support.  Needless to say, I didn’t sleep much that night. 

Thursday morning we found out that Colton was being transferred back to SSH.  So, Chris went up to Boston to be with Keltie for her surgery and I met Colton at SSH to get him settled back in before I headed up to Boston myself.  Colton was welcomed back as the Mayor of the SSH NICU / Special Care Nursery and I felt comfortable knowing he was with people that knew him so well and loved him so much.  I got to Boston just in time for Keltie to come back to her room for recovery.  She had an IV in her head – but thankfully Chris prepared me to see that before she was wheeled in.  The surgery team fell in love with her and wanted to keep her 🙂  She did really well and ended up with a bilateral hernia repair – so two incisions about an inch or so in length.  The surgeon said he did it “on her bikini line” and I literally replied with “what do I give a shit about my 3 month old daughter’s bikini line!”  But, apparently there are some other parents who get concerned about that stuff – hey, to me, they are her little battle scars for being such a brave, strong girl!  She came up from surgery and wasn’t intubated, which I was SO grateful of.  She did need some low-flow nasal cannula support for about an hour but by Friday morning she was just like she was before surgery and doing all her breathing on her own.

Friday morning we found out that Keltie was ready to be transferred back to SSH and I headed up to Boston to pack her things and wait for her ambulance chariot to get there.  It was so nice to have them back together and back to their “home” hospital where people know and love them so much.  Fran was working the weekend and had them and it filled my heart to not have to be worried about them being further away in a place they didn’t know with people who didn’t know them like the team at SSH does. 

Since being back at SSH, they have both been doing well.  Colton is a moose and weighs 6lbs, 8oz and Keltie is holding at around 5lbs, 2oz.  They are preparing Keltie for discharge and it may even be this week!  Colton is still struggling a bit with some spells – but not nearly as much as he was prior to going on the thickened feeds.  His reflux is just brutal on him.  But, on Saturday he was put on room air with no breathing support and he’s been doing awesome ever since!

We’re getting close…there may actually be a light at the end of the tunnel.  Of course it wouldn’t come without some dramatics prior to, but should we expect anything less?

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