32 Weeks Gestation

Lincoln is now 8 weeks old and 32 weeks gestation.  He's about 3.5 pounds - I should have looked that up today!  He is doing really well on his binasal IMV.  Dr. Mintzer says immunizations start in TWO days!  I spoke with his nurse Heather today, and she said we can spread them out, just let nurses know.  I have no problem with him being immunized, but I'd rather he take his time getting them, rather than getting them all in one fell swoop.  Now that Lincoln is extubated, he's much easier to get out to cuddle.  Daddy and I both get to hold pretty much whenever!  He cried today and I caught it on video.  This is the third day we can hear him, but the first two days it was so soft we could barely tell.

Yesterday I went to my endocrinologist appointment.  It was a follow-up since I had had gestational diabetes.  Dr. Miller was not concerned about my numbers told me to stop testing.  I do have to go for one final round of blood work to check my A1C.  That will tell us if my diabetes went away this time or not.  While I was there, I mentioned that my hair is falling out (remember from my hair appointment last week?).  He kind of poo-poo'ed it, and I said I knew it wasn't from the pregnancy yet.  He asked how I knew that.  I replied that with my other two pregnancies my hair had been amazing, then at pretty much 3 months to the day postpartum it had begun falling out like crazy along my hairline.  He agreed that that was normal for post pregnancy.  I said this time it is different.  I predicted that we were having a boy, because my hair was so different this time - very thin, very fragile, etc.  The prenatal vitamins didn't seem to help either.  As I was speaking to Dr. Miller, he was typing the entire time.  So he asked me to show him where I was losing my hair.  I showed him the spot on top of my head.  He said aloud as he typed, "Not FOS."  I asked what FOS stood for, he said Full of Shit.  He said a lot of women come in complaining of losing hair, but its due to post-pregnancy or thinning hair as you age.  This was neither of those.

Dr. Miller told me I have Alopecia Areata, an autoimmune disease.  He told me to see a dermatologist right away (I have an appt for Monday morning.)  Essentially, my white blood cells see my healthy hair follicles as unhealthy and attack.  So I have four bald patches the size of half dollar coins.  I'm doing a terrible Donald Trump comb-over to hide them.  The good news is they can grow back, the bad news is they can NOT grow back and more hair can fall out.  I'll know more after my appointment with the dermatologist.  I don't know if there is medication I can take, but I do know they can try to speed up the regrowth with steroid shots.  This couldn't have come at a worse time.  I have enough to deal with, and now this on top of it.  It's very frustrating, embarrassing, and I want the universe to go a little easy on me right now!

Day 56

Every day for 56 days we've been at the hospital with Lincoln.  He'll be 8 weeks old tomorrow.  He's growing nicely, up to 3lbs, 5oz from 1lb, 10oz.  He has a nice head of fluffy blonde hair.  His feeds are up to one ounce (30mL) every 3 hours.  He's still on his vent and we're working to get him off of it.  I have officially stopped counting the number of times I've held him as it's over 10 times now.
They switched his vent over to the SIMV setting which makes him do more of the work.  Lincoln didn't like that, so he's back on the old setting.  They have weaned his PIP to 12 and his PEEP is at 6.  The lower those numbers, the stronger he's getting.

Yesterday I came to the hospital after work.  It was a nice, but too quick, visit.  I pumped, and when I pump, that usually makes the time here too short to hold him.  My good friend Trisha was scheduled to be his nurse last night.  (Nursing shifts run 7 to 7.)  So my plan was to go home, have Dave take Elliot and her friend Sarah to dance, come up to the hospital, and then pick the girls up and bring them home.  Then I would go back to the hospital with the hopes of holding Link and hanging with Trish a bit.  Dave reminded me that we did that last week and he had a cello student show up.  So he stayed home and I took the girls to dance and went back to the NICU to hold Lincoln.  When I got Elliot home, we had dinner, did Girl Scout homework, and got her off to bed.  I went upstairs to pump while David got ready to go to the hospital.  He commented that I hadn't seen Addie and Charlie all day and shouldn't have gone back to the hospital.  I didn't even really think about it, because my plan had been to go back when the girls were all in bed, and when plans changed I just bumped up my visit.

I have been feeling incredible amounts of guilt lately.  When I'm home I feel guilty I'm not with Lincoln, my newborn, preemie, needy baby.  When I'm with Lincoln, I feel guilty I'm not with my girls at home.  Dave and I have barely seen each other.  We are constantly passing each other, and our longest conversations happen over text.

So when Dave made his comment, I got upset.  It's one thing to think you're failing at parenting no matter what you do, it's another thing when your spouse says it out loud to you.  Dave and I actually don't fight often.  But my anxiety and depression make me really hold onto it a long time.  So some angry words were exchanged, and he headed off to the hospital.  I was upset.  I tried to keep myself together, but after awhile I could feel a panic attack coming on.  My heart felt like it was racing (though I don't know if it was or if it was just my brain making me think it was), my skin felt like pins and needles.  I felt like I was on fire, but shivering from being so cold.  I tried meditation - Dave got me this amazing meditation headband and app called MUSE.  I used it.  It tells you how much of the time you're calm over the meditation session.  I only got 2%  for the entire session.  I've never seen it so low.  So then I really knew the panic attack was coming.  I had read that should not take Xanax while breastfeeding.  I also felt it was the only way I could get out of this one.  I held strong and paced my room - there must be a runway now in my carpet for how fast and long I paced.  I crawled back into bed.  I got up and got in the shower.  The shower was freezing and burning my skin at the same time.  I ugly cried and sat on the floor of the shower.  I finally got out and up.  I turned a romantic comedy on, I can often distract myself out of anxiety, that didn't work - my skin was crawling and I was too uncomfortable.  I texted Trisha and asked her if I could take Xanax.  I knew this wasn't going away anytime soon.  It turns out, after talking to Trisha and Dr. Google, that you can take one low dose of it and just not nurse for two hours; you simply cannot stay on a low constant dose, which is what some people are prescribed.  It is prescribed for me simply to help me get out of panic attacks.

I had to take the day off work today, because it takes me a good 24 hours to actually feel back to my normal physical self after a panic attack.  I was bummed to take the day off, I had several things I needed to get done and check on, plus the seventh grade is on a field trip which means an extra free period with which to get said things done.

I type all of this not to air my dirty laundry about a fight between David and I.  His point was completely reasonable.  It's just that people have anxiety and depression and not a lot of people talk about it.  So maybe someone reading this understands me a little more, or maybe someone can relate. David and I are all good.  This does not mean our relationship is in jeopardy - it's just a normal up and down of a relationship.  And frankly, we're both exhausted, worried, and stretched to our thinnest selves emotionally right now, so we're easy to set off.


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Nurse JoAnn (I think she LOVES Lincoln - she is always quick to sign up for him, and when she doesn't get him, she comes in to visit with him anyway - and we love her!) just told me that they're electively extubating him today!  In less than an hour, in fact.  I can't believe it!  They kept putting it off and putting it off, I started thinking "next week, I guess," over and over.  This is big news.  I can't wait to see him without the tube down his throat.

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Okay, he has been extubated!  He's on a CPAP with bi-nasal IMV, which means they can still adjust the rate of breaths and keep his lungs and airways inflated.  He's been extubated almost an hour now, and he's really doing well, satting 100 on 40% FAO2.  You can hear him cry - if you stop everything you're doing, no machines are alarming, the door to his incubator is open, and you stick your ear through the porthole.  LOL.  It's the softest cry ever - very hoarse from having the tube down.  The first thing Lincoln did after having his tube removed is to grab his feeding tube and remove it, too.  Luckily that one is easy to replace.  But apparently, Lincoln opts to not have ANY tubes down his throat now.

Nurses and NP's and doctors will now watch for him to have too many A's and B's - apnea's and bradychardia attacks.  If so, he'll be reintubated.  But for now, we wait and see how he does.

Big Weight Loss

We expected a big weight loss today after skipping two feeds yesterday and pooping "for three hours."  He's down to 1395.  Hoping hoping hoping to get the breathing tube out this week and move on.

Medical Mystery

Lincoln sent everyone into a tizzy today.  While Daddy visited this morning, he started being really naughty.  He threw up, and his nurse was very worried that he had aspirated because he was having some bad breathing epidsodes (bradycardia).  The brady's were unexplained, the vomiting was weird because he hadn't done that since he first began his feeds.  His belly was distended.  His O2 sats were all over the place.

The nurses (his nurse Rosemary and NP Pam) decided to find the problem fast.  A chest x-ray was performed because they needed to see if he had aspirated or if his tube had moved.  A new blood gas was taken, even though one had been performed just yesterday, to rule out any major changes.

Then Lincoln pooped.  And pooped, and pooped, and pooped!  Rosemary said he pooped for about three hours.  And when he was done pooping?  Everything went back to normal.  *sigh*  Boys.

I'm super ready for him to be off the breathing tube.  The next step is a nasal cannula which is step back from a CPAP.  Essentially, a CPAP that they can still change the settings on like his vent.  I think he and I both are ready for that.  Maybe this week.

Today I told Pam, his NP, that I need him home two months from today.  Christmas Eve.  She asked when his due date was, I told her Christmas Day.  She said, "Oh, that may be do-able."  I'm not asking to have him home super early or to really jump the gun.  Just one stinkin' day before his due date.  THAT will be my Christmas miracle.

Haircut

I got the haircut, not Lincoln.  Normally, haircuts are no big deal.  For me they are a big deal.  I am terrible about "taking care of myself," I tend to put my stuff off because I feel guilty leaving the kids yet again for something like that.  Plus my hair is straight and boring, and who can even tell when I get my haircut but me?  Well, it has been 15 months since my last haircut.  I know I need to keep it healthier, and I definitely wanted to get rid of some length, and I knew once Lincoln comes home I'll be even WORSE about things like haircuts.

Teri cut off between 6 and 8 inches.  It was a lot of hair, and it wasn't very healthy.  When I was pregnant with all my girls, my hair was luscious.  It was thick, healthy, and easy to manage.  This pregnancy, my hair was thinner than it's usually very thin-ness, oily, tangled easily, and overall just gross.  So it was time to get rid of my gross hair.

I always always always have my hair up in a messy bun.  It's easy, I like how it looks enough.  I dream of other hairstyles, but with thin hair, most of them would never work.  So anyway, off I went to Teri.  She combed through my hair and found bald spots.  Like bald spots. Four of them.  Four bald spots.  I haven't even started losing my hair yet from Lincoln's birth (with my other pregnancies, three months after delivery my hair started falling out and became my normal thin hair again with a receding hairline which eventually grew back).  I'm hoping that doesn't happen this time.  I can't afford to lose more hair.  I have four bald spots, I'm doing a Donald Trump combover now, and I'm worried about the rest of my hair falling out.  Teri said it's likely from stress.  I guess it is.  Now I'm stressed about having bald spots and a combover at 36 years old.

It was a big topic of conversation at school today, though.  Students and teachers alike commented on the difference.  They didn't realize how much hair had been cut off, though, because most have never seen it down.  In fact, one student said, "Mrs. Jak, your hair is getting so long!"  But she's never seen it down, so she didn't realize it was actually 8 inches shorter.

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Lincoln is now 3lbs, 3oz.  That's one ounce heavier than Charlie's birth weight.  He's doing a nice job of growing.  He's off his antibiotic, there was no infection. He's starting diuretics again, the doctors are eager to get him off his vent and he's not really cooperating. The hope is that the diuretics will give him the push he needs to wean off the vent. He had a blood transfusion a couple of days ago, and he's still getting his sodium and caffeine.

A Step Back

Lincoln had some setbacks today. First, his weight is down. I expected that with the Lasix - I was actually telling my coworker Lisa that I suspected something was up because he gained five ounces in two days. Too much, too fast. Then, his heart rate was very high, going over two hundred frequently. Nurse Brianna said that he was likely too hot, and indeed the incubator wan't taking his temp reading accurately. But they ran blood tests anyway. His hematocrit was low, so he's getting a blood transfusion. They're unsure about an infection (something I suspected earlier when I was there because of his temperature), so Lincoln is getting two days of antibiotics to play it safe. 

Not much good news today. None, even. This is the trip in the NICU - good days/bad days, two steps forward, one step back, etc...

Praying for a good day tomorrow.

Day 47 of Life

Day Forty-Seven of Life: That's how rounds started today.  It's also how rounds started over three years ago, the last day of rounds for Adeline & Charlotte.  I keep telling myself we can get through at least 47 days, we've done it once already!

I'm happy to report that Lincoln is doing very well on day 47.  He hit three pounds today - in fact, three pounds, one ounce!  Also the settings on his ventilator were lowered today.  His respiratory rate went from 50 to 40, and his PIP from 17 to 16.  Essentially this means that they are expecting Link to do more of his own breathing.  I think he'll do well.  I hope he'll do well!  Blood test tonight at 8:00 to check and see how it's going.  Positive thoughts.

It's Temporary

Link was all about being held today.  No problems!  No idea what his problem was yesterday LOL!

His weight shot up last night - he's now 2lbs, 15oz!  He's such a little champ - I'm super proud!

They've weaned his settings on his vent again, but only after having to go up again last night, so we're back to where we were yesterday afternoon.

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I'm actually pretty proud of Dave and I.  This is SUPER not easy.  There is a lot of guilt - no matter where I am, I feel guilty that I'm not where I'm not.  If I'm at the hospital, I feel guilty about not being home; If I'm at home, I feel guilty about not being at the hospital.  And driving to the hospital every day is brutal.  And emotionally it gets tough.  And we're tired.  But I keep telling myself it's temporary.  Every time I hate pumping, it's temporary.  Every time I'm stuck in traffic again, it's temporary.  And I'm grateful that the thoughts that I was thinking earlier in his short life are different now.  Now I think, "Will he be home in time for New Year's?  Christmas even?" instead of, "Will I buy him special pajamas? And how tiny will the casket be? And how do you choose a funeral home?"  I can say I feel confident that my little man is coming home.  But for now, we put in our NICU time.  It's temporary.

FINE - I WON'T Hold You!

Lincoln did NOT want to be held today, apparently.  His nurse sweetly asked if I would like to, especially since he had been such an easy baby for her all morning.  So Christine handed him over, but we could not seem to find the exact location of the breathing tube that Link was craving.  After low satting for about 30 minutes and adjustments being made like crazy, we still could not find the sweet spot.  So I made him go back to bed.

In other news, he's up to 2lbs, 12oz!  And his vent settings were slightly lowered today.  They're planning to wean him slowly off this vent - perhaps if we do it slowly, Link won't notice and give us any trouble.

30 Weeks Adjusted

Today we would have been jumping for joy at hitting 30 weeks.  Don't get me wrong, I'm still thrilled we've hit 30 weeks.  Link is doing great on his new vent now, in fact they were able to lower some settings today.  They will do a blood gas test every 12 hours for a bit to see how he's doing on new settings and "wean him aggressively."  Great news!

Weight remained the same today.  Feeds remained the same as well.

Six Weeks Old

Linky is six weeks old today!  This is when some Moms return to work after having a baby.  I went back four weeks ago - boohoo!  I am insanely blessed, though, that that was my choice and I can take as much time as I need.  In some ways this six weeks has actually blown by quickly - you know the saying, "The days are long, but the weeks are short."  That definitely applies here.

We're getting all kinds of reviews on Lincoln's new vent.  First we were told we'd be going to the conventional vent, then told maybe we'd go straight to the CPAP.  Then I was told we'd be going to the CPAP, and yet when I arrived a couple of days ago, they were talking conventional vent again.  Two nights ago, he was finally switched over to the conventional vent.  I don't like it for several reasons: 1. I don't understand it.  I knew what the settings and things were on the Jet.  I thought I would recognize this vent from when Addie & Charlie were on it, but it turns out to be a NEW conventional vent. 2. It says right on it, right at the top "Life Support Device."  I don't want to be reminded like that that if we turn it off, my child could die.  Let's put that in the fine print.  3. It alarms ALL THE TIME.  And because it's new, the nurses don't totally understand what to do (though they're learning quickly).  Now I need to learn.

But then, I spoke with Dr. Eche today and he said Lincoln isn't doing that well on the new vent.  So he'll be changing him to ANOTHER different vent.  I said, "Good, I don't understand this one anyway.  I won't waste my time trying to learn about it."  But THEN, David went up after me today, and said now Link is doing WELL on this vent and he will likely stay on it.  *sigh*  WHAT?

He's growing well - 2lbs, 10oz today, which is one full pound bigger than what he was when he was born. I got to hold him again, I think I'm up to 8 times now.  I sang to him nearly the entire hour I held him - I made up a ton of songs when the girls were all little and I tried singing some to him, but they all rhymed with "girl" and ended with "world."  "Boy" doesn't rhyme with "world," so a lot of my songs ended with "Oy."  He may be getting some nice Long Island Jewish feels.

Oh, and RSV season is officially here (which I know, because my friend's daughter is in the same hospital as us WITH RSV, poor baby!), so no more visits allowed for big sis.  The twins keep saying they can't wait to be four to be able to go see Lincoln.  That doesn't work for two reasons - 1.  We plan to have him home before they turn 4, and 2. RSV season doesn't end until April at least!

A Big Night for Lincoln

When I left the hospital today at 3, Lincoln was prepping to get a blood transfusion, be extubated and reintubated with a larger tube (he's outgrown his last), and be moved onto the conventional ventilator. His hematocrit was low, hence the blood transfusion. Yesterday, Kelly said she could hear an air leak and at one point heard him crying. Those were the signs that the breathing tube he's on now (the one he's had since birth) was too small. They'll remove it and replace it with a bigger tube today. I'm not entirely sure why we're switching to the conventional vent, since the original goal was just to put him on CPAP. I think Lincoln is high-satting and low-satting oooften and too unpredictably to be ready for the CPAP. Link also started Lasix today to help him get rid of too much fluid. Maybe the combo of everything will allow him to wean off the vent.

In other news, Kelly gave him a 'spa day' and he got a good sponge bath. I was shocked to see how much hair he has! Until now, his hair has been kind of matted down, but this afternoon it was fluffy and fuzzy and almost a Mohawk 😉. So cute!

Oh Poop!

Lincoln is doing well. He seems to be growing like a weed and getting stronger. He's had his last dose of hydrocortisone two days ago, and his blood pressure numbers are staying normal. The goal now is to wean him off the jet vent. He's at max feeds - 22mLs. He will start lasix tomorrow for three days. On the third day, he'll begin an oral diuretic. This will rid his body of excess fluid, including his lungs, and hopefully from there he can be weaned off the jet. After the jet, he'll go on a CPAP machine. 

Lincoln is looking good. Mommy held him today. We've been holding him more as he gets bigger. Once he's off the jet, he's easier to hold. The jet has a little box that sits in Link's bed that sends puffs of air to his chest. That box has very short tubing, making it very hard to move him. It's a two person job, for sure. When the jet is gone, the box is gone.

It's gotten very hard to leave the hospital. I hate not being here with him, I hate not holding him daily. He's a baby and I'm a Mommy. We're supposed to be cuddling, breastfeeding, and snoozing. Instead, I talk to him (and sing and play music and read books to him) through a porthole. Can't wait to scoop him up whenever he or I want! It's unnatural to leave your baby everyday. Thankfully, the nurses here are amazing.

Oh, funny aside...I was changing Lincoln's diaper today, and when I opened it there was poop galore! When I went to wipe him, he pooped more. I closed his diaper up. I tried again a minute later, same thing. I wiped, he pooped. He finally stopped, so I removed the old diaper with a new one under it, and he immediately started again! Yet another new diaper and we were good to go. Kelly got him ready to hand him over to me, and lo and behold, another poopy diaper. The boy is cleaned out!

Two and Half Pounds

Linky-doo hit two and a half pounds today!  His feeds are up to 19cc's.  His max feed is 22cc's, so they're taking him up one cc every 12 hours (at his 2:00 feeds), as long as he can tolerate it, until he hits 22.  Growing is one of the best ways to help him, so between his increased feeds and calorie supplement, he's doing well growing on the jet ventilator.

Speaking of the jet, I spoke with Eche again today as I was leaving the hospital.  Eche is having an adrenal ultrasound done on Monday, and is hoping to take Link off the jet soon after analysis.  He will be on a cpap next.  Getting off the vent means no more intubation.  While the jet vent is good for Lincoln and the reason for him being alive, it is also damaging his lungs.  Link has BPD, which is common for kids on a vent.  The vent keeps him alive, but causes damage as well.  His lungs are stressed and hyperextended.  Getting off the jet and onto a cpap will give his lungs a break.

In other news, the last time I was in our new pool was September 2nd, the day I went into labor with Lincoln.  We had the pool closed today.  Boo.  LOL.

29 Weeks (Adjusted)

Lincoln will be referred to by an Adjusted Age until Christmas day of 2017.  Preemies have a real age and an adjusted age.  Link's adjusted age right now is 29 weeks gestational.  We would have been thrilled to have made it this far in the pregnancy.

I was happy when I got to the hospital and saw that our Kelly was in our pod.  She wasn't on with Lincoln, but I knew she'd help get him out so I could hold him.  I, maybe not even politely, let our nurse Michelle know I wanted to hold him today.  I'm just not in a great emotional place, and I super needed to hold my son.  Michelle talked to Kelly and agreed to let me hold him.  I held him for about an hour and forty-five minutes.  Mommy needed that.

During rounds, Dr. Eche was pleased to see the kangaroo care.  When rounds were over, he said, "I'm happy for the TLC for baby AND mommy."  Lincoln is at 16cc feeds, going up one cc (mL) every 12 hours until he hits 20, I think.  15cc's is half an ounce.  He's being D/C'ed (discontinued?) on his TPN at 5 PM.  He will receive sodium twice a day to keep his levels up, but other than that, now that he's on full feeds he does not need IV fluids.  His vent settings are up to 420 and 29/11.  He went up 5g today to 1090g - that makes him 2 lbs, 6 oz.

I didn't go to work today after originally planning to, because I am not just feeling like I can handle it right now.  This is a lot to go through.  My mind is always in a million places.  Today was too much for me, so instead I headed to the hospital.  I knew this would be hard.  I didn't expect that even when Lincoln is doing well, which he is right now, I can still have a hard time.  Typically, how Lincoln is doing directly affects how I feel.  Today I feel a little out of control.

Five Weeks

Lincoln is five weeks old today.  I'm feeling down.  I realized this afternoon that he's been held five times for one hour each time.  My child is five weeks old and he's been held for five hours of his life.  That's awful.  It makes me really sad.

Changing Boy Diapers

Last night for the first time I got to take Lincoln's temperature and change his diaper. His nurse Hannah offered and I jumped it on it. I changed my first boy diaper! (Actually, I used to change mostly boy diapers as a babysitter, there was something blue in the water on Robson Rd where most of my families were.)  Tonight, I got to do it again with nurse Elyn. 

Lincoln is up to 1070g, he's packing on the grams! He's up to 14cc's on his feeds, and as a result they've gone to 1kg of TPN for KVO (keep vein open). The TPN is being used to keep his pic line open for now, tomorrow they will go to something else like saline for that and get rid of TPN and lipids all together. Link goes to 15cc feeds tomorrow which are full feeds, and that means he doesn't need his IV fluids at all.  There are still some significant breathing issues going on as a result of premature lungs, we're happy that Dr. Eche is back on with us to deal with them. Dr. Eche even said his goal is that by the end of his two weeks with Link, he hopes to have him off the jet and onto a cannula.

Something is wrong with the keyboard on my iPad that it's not showing up, so impressively, I've typed this entire post by muscle memory and a lot of backspacing. 

Staying the Course

I didn't post yesterday.  My days are so full with working sometimes, getting things ready for the school musical, driving the hospital, spending time with my three beauties, being a wife, and being a homemaker!  Luckily, there was not much news-wise to share.  And today's news is the same as yesterday's news.

Lincoln's vent settings have gone up some, he had been able to get down as low as 23% oxygen, with room air being 21%.  Now he's back up to 30-40%.  His jet vent was giving him as low as 240 breaths per minute, but now it's up to 420.  His PIP was lowered from 29 to 27, and his PEEP is at 10, I believe.  His immature lungs just aren't able to do it all yet.

Link's feeds are currently at 12 cc's of breastmilk with a 24-calorie supplement.  I'll have to ask (again) about whether that's 24-cals in a day or in each feed.  I've asked before, but always gotten an 'Um...I think...' answer.  When his nutritionist is here, I'll ask her.

My Dad, a.k.a. PopPop, whose 64th birthday was yesterday, made us "Keep Calm and Linc-oln" t-shirts.  We will try to get a picture of the five of us wearing them.  We've also given out a couple to nurses who have spent a lot of time with our little man.

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Okay, I asked about the 24-calorie fortifier.  It's a liquid that's added to breastmilk in 25 cc units.  For every 100 cc's, 24 calories are added to the milk.  Lincoln is getting 12cc's per feed now, so after every 8 feeds, he's gotten a bonus 24 calories.  He gets 8 feeds a day, so for now it's an extra 24 calories a day.  As his feeds go up, he'll be getting his extra calories more quickly.

Weaning Steroid

Lincoln has been on hydrocortisone for five days now, today is his last day. Tomorrow, rather than just cut him off cold turkey, they will give him half the dose every eight hours for three days, then that same half dose only once per day for three days. He's dropped weight again for the third day in a row; five days ago he was 925g, now he's 915g. I am hoping the extra calorie fortifier he gets, which adds twenty-four extra calories to his feedings and that he is tolerating well, will help him not only gain again, but gain more quickly. He's been on the fortifier for a few days now (first a 22-cal, now 24-cal), but the steroid has been helping to level off some functions, so I hoping that's the reason for weight.

Lincoln sucking on his binky 💜💜💜

Need Good News Today

Today Lincoln is 30 days old.  This is head-sono-repeat-day.  Incredibly important test today.  A couple of weeks ago, Lincoln was diagnosed with two level 1 brain bleeds.  Head sonos are done on day 1 of life, then day 10, and again at day 30.  Link had an extra one in there after his really really bad couple of days.  It was difficult to know that we had to wait until day 30.  It's finally here!

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The results are in: The repeat head sono was..."unremarkable."  When I asked Dr. Pynn if that meant no sign of the bleeds, she read, "There is no definitive proof of brain bleeds."  YAY!!!  Brain bleeds above a level one can lead to developmental delays, blindness, deafness, immobility, and even death.  We are THRILLED!!!!!! that his bleeds are gone!

Actually Four Weeks Old!

Okay, I'm so exhausted that I can't count. TODAY Lincoln is four weeks old, not yesterday. No big changes today, just feeds going to 9 cc's and tonight they will start fortifying my breast milk so Link gets more calories. He should really start growing now. 

Most importantly, Daddy David FINALLY got to hold his son!