Day 119

Today Lincoln was circumcised.  According to his nurse Jenn (one of the many Jenn's), it was a "perfect" job and looks like "one of the best circs she's ever seen."

Two days ago Link had a rectal biopsy (we're really running this kid's privacy parts through the wringer!).  We were happy to find out today that he does not have Hirschprung's Disease, which would have meant his body is incapable of pooping on it's own.  Lincoln has a lot of trouble pooping, but his body is immature and his tone is low.  Because the results were negative...

If all goes well tonight, Lincoln comes home tomorrow!  There is a lot riding on tonight.  But tomorrow morning we meet the company in Link's room that will be providing the oxygen for home, and we get a lesson on it.  We will be schooled in his medication.  And we will move out of room A5 for the first time in 120 days!

Christmas Day 2015

We had a lovely Christmas Day.  Elliot, Adeline & Charlotte woke us around 7:15, which was far better than what I had expected.  We opened presents, too many as always, and had a nice big breakfast of eggs, sausage, and toast.  We went outside to play in the incredible 60-65 degree weather.  The twins had gotten "motorcycles" and Elliot got a hockey set.  We enjoyed a good 30 minutes or more outside in the surprisingly warm sunshine, atypical of Christmas weather around here!  We headed inside, and Daddy made popovers (a Jak family tradition) which we ate for lunch.  Addie & Charlie headed off for naptime, Elliot exploring her new toys (I believe the Legos won out this time), and Mom and Dad tried to make sense of all the new stuff in the house.

We woke the twins from their nap a little before 4 and Dave and I drove them to his Uncle Tom's house.  We dropped the kids there with Grammy and Grandpa, and then David and I headed off to the hospital.  We handed off a box of chocolates to our nurse JoAnne who always signs up for Lincoln.  We cuddled, fed, and snuggled our baby.  Just before his feed, JoAnne agreed to remove his NG tube as Link has now gone over 48 hours of nippling all feeds.  That was a nice Christmas gift - one less thing for Lincoln to be hooked up to!  We can see still a bit more of his sweet face!  After his feed, Dave and I went up to the Ronald McDonald room for dinner.  There was (cold) garlic pasta with broccoli, linguine and mussels (we don't eat seafood, so we avoided this one!), baked ziti, and sausage and peppers.  All cold.  And the microwave there is broken.  The kind volunteers offered to take our plates to another unit in the hospital and heat up our meals, but it just wasn't that big a deal, so we ate the cold food.  We had dessert as well, then headed back down for more cuddling (and pumping).

I am a huge breastfeeding advocate and I really nursed my three girls for a long time.  Lincoln's situation is of course totally different from the girls and I'm just so desperate to have him home at this point, I haven't even tried breastfeeding in at least a week!  My plan is to start up at home with one or two feeds a day.  I will continue pumping, I truly believe that my breastmilk is keeping this boy healthy and growing.  He has to go 48 hours of fully nippled feeds to come home (he's hit that mark now!), and I didn't want to mess with his stats by trying breastfeeding as well.  Looking forward to having him home so we can back on the wagon.

Speaking of coming home, we're definitely in the single digits.  I'm actually guessing five days.  His carseat is in his room, JoAnne is going to do the carseat test today!  (An hour and a half of sitting in the carseat to be sure his sats don't tank.)  We're waiting on clearance from cardio, his surgeon (for pooping issues), and his oxygen delivery.  The end is SO near!!!

40 weeks old

Tomorrow is Lincoln's due date.  He's ready to come home. He needs an oxygen tank set up at home as well asnanoortable tank and he will come home with a pulse-ox monitor. He needs to be signed off on by cardio. He needs his circumcision. He needs his ... I can't remember it all. But the wheels are in motion. 

Tomorrow is Christmas Day. Lincoln's due date. We'll open our presents, go to Grammy and Grandpa's to open more (missing my family and feeling so homesick), send the girls with their grandparents to David's uncle's house while David and I head up to get some quiet snuggles with our little man. 

I'm so grateful for the health of our son. One of his docs this week said that he has had the best possible outcome for a 23-weeker. Everyone today was shocked that a wimpy white boy was rocking out his due date. Now to get him home.

Oh Poop

Lincoln likes to keep us on our toes. Just when we get lulled into a false sense of security (I was back to secretly wishing for a Christmas Eve release...), something new comes our way!  Today was poop. Lincoln doesn't really poop on his own. He has be 'stimmed' (Lubricated rectal thermometer) or given a suppository, or most often, both. And still we wait. And after a couple of days, the flood gates open and poops rivers. 

Today when it was mentioned at rounds, folks got more serious. A surgical consult was called in. A barium enema was ordered. Potential surgery for Hirschprungs Disease - and a biopsy of his colon to diagnose. Surgeon said no more stimming or suppositories. Barium enema done - injecting contrast liquid so colon can be x-rayed to determine where the problems are.  X-rays looked good, so he'll simply be watched for few days by NICU docs and surgeon. 

We're still waiting on him,to improve with feeds. He's doing well when nippling every other feed, but he does not have the stamina to nipple every feed - he simply gets too tired. Feeds are what are really holding him back from coming home. He'll come home on oxygen - a big tank for the house and a small tank for traveling to doc appointments, etc. His tone sucks as well, he was a 23-weeker and this is to be expected. It's why bottling and pooping is so hard. He already sees a speech therapist and a physical therapist. Both of those will continue when we leave the hospital as part of early intervention.

"The Big D..."

Today for the first time, both our nurse (Kelly A) and our doctor (Dr. D) mentioned "The Big D..."  It's been our goal since day one, but one day one and week one and month one I wasn't sure we'd even get to have The Big D...  No one will say the word, but they all say The Big D...

Discharge.  It's so close I can almost imagine it.  It will come with lists and lists of to-dos.  It will come with multiple prescriptions and instructions.  But it will come.  Sooner than later, in fact.  Today, Lincoln was moved off his 1L cannula and onto a cc flow.  The cc flow delivers pure oxygen (not mixed with room air) but in a much smaller amount (125mL instead of 1000mL).  His daily caffeine (to keep A's and B's at bay - which haven't been a problem AT ALL) was DC'ed today.  His daily potassium and sodium are being halved.

Dr. D sat in the rocking chair in our room (there because Kelly likes it for bottlefeeding) and chatted with me for 10 minutes or so today.  He said feeds are going better, but expects the once the reflux medication really kicks in they'll improve even more.  A few days ago someone finally listened when the nurses said reflux.  (JoAnne has been telling me for about 5 weeks that he has reflux!)  GI came down and put a tube down Lincoln's throat for 24 hours that read the acidity and reflux levels.  Dr. D told me that any episode of acid lasting longer than 5 minutes is a concern and considered reflux.  Lincoln had one episode that last 13 minutes!  Imagine that pain?  Poor baby!  The medication should be very effective in treating the reflux.

Dr. D explained the other stuff above, too.  He talked about what an old man Lincoln is; he asked how many days old he is - 104 - and how many weeks he is gestationally - 38.  Thirty-eight weeks is not actually that old, Dr. D said, we'll cut him a little slack.  When Lincoln comes home, he'll come home on his CC flow and will follow Pulmonology for his crappy lungs.  Eventually pulmonology will wean his oxygen at home, starting with days.

The end is near.  I'm ready.  But Link can take the time he needs, because we want him to come home as healthy as possible.  And because he's coming home, and I could not be more grateful.

Get This Baby Feeding!

In the last few days, my patience has been running thin.  That, I'm sure, has to do in part with the return of good old Aunt Flo.  It didn't come back this quickly with the girls, I'm sure it's because pumping exclusively doesn't hold a candle to actually nursing.  But I'm done - super done - with being at the hospital.  I love the people there.  I love our doctors and nurses.  The NICU isn't a place you can just pop into once you're out to visit old friends.  But I need to be out.  We're on day 96, and I'm just over it.

So in the last couple of days I've run into our nurse Kelly and our nurse Tina.  We haven't had them much for Lincoln (a lot of Kelly early on, but not recently).  They were amazing with the twins and getting them to feed so we could go home.  I begged them both upon seeing them to help get Lincoln feeding.  Kelly was on today with him and had him working.

I worry - maybe unnecessarily - about offending our two regulars, JoAnn and Heather.  I love them both, but I know Kelly and Tina will kick Link's butt.  JoAnn and Heather love him too much to kick his butt LOL.  We'll see how he did with feeds today.

At this point, I think feeds are the key to getting him home.  He's still on the 2L nasal cannula, but he's doing fairly well with that.  He sucks at nippling from the bottle or me, so that's the major obstacle at this time.

3 Months Old - Day 92

Here I am snuggling with my baby boy on his three month birthday. I have such mixed feelings right now. I feel excitement that he will likely be home by Christmas, frustration at finding time to see him (only just over an hour today!), joy that he does so well, anger that this happened at all. I truly try to focus on the positive things. I am shocked and thrilled that he has done as well as he has. At a few different points I was mentally preparing myself for a funeral, now I'm wondering if there will even be any developmental disabilities.i love snuggling and breastfeeding him. His warm little body resting on mine is the greatest, most calming feeling. I just hate that at three months old, here we are, still putting him back in his hospital crib and saying goodbye. I'm trying to get in good time with my girls, because I know that will be tougher once he comes home. I even talked to A and C this morning about how they can't touch him or pick him up without Mommy and Daddy helping. 

Link got his first bath in a tub (okay, bucket) today. He's drinking prune juice once a day to keep things moving, but still usually needs some help pooping. He's gaining weight steadily, weighing in at 6 lbs, 12 oz today. He has his Brutus the Buckeye mobile set up on his new bed. We'll keep making him strong and praying for him to come home and complete our family soon.

Lactation Cookies

Uh...yum!

These cookies have brewer's yeast, flax seed meal, and oatmeal to help with milk production.  I should probably eat a lot of them to help myself out!

Here's the link and recipe:

http://www.food.com/recipe/oatmeal-chocolate-chip-lactation-cookies-by-noel-trujillo-192346

Open Crib!

Lincoln moved into an open crib yesterday!  This is a major step toward going home.  In an open crib, Lincoln has to learn to maintain his body temperature.  He is wearing fleece pajamas today, then is covered up in a two-layer flannel blanket folded twice (so eight layers right there), another flannel folded twice (four more layers), and a hat.  It takes a lot for little preemie babies like him to do that on their own.  We had been told no open crib until he was nippling most feeds, because nippling burns calories, and he needs those calories to keep warm.  Time to bring in our Brutus (Ohio State Buckeyes) mobile!