Saturday, December 27, 2014

Good News! No Surgery for C4

Thank goodness for second opinions!  When the team downtown reviewed the X-rays, they determined the angle of the break was not as severe as previously thought.  There is enough bone left that remodeling should occur without requiring surgical alignment of the bones!  C4 has avoided surgery! We'll still be in a cast for 4 weeks and we've added another specialist to his roster temporarily, but at least we avoided surgery!


C4 is VERY happy about his Bedtime Math book!  Thanks for that KD!  C4 is NOT HAPPY with the cast or the sling.  Hopefully he'll get used to it and we won't spend the entire 4 weeks constantly asking for its removal.


Friday, December 26, 2014

It Never Rains, But It Pours...

It has been a hell of a few weeks and it hasn't slowed down yet.

Three weeks ago I was diagnosed with a genetic condition called Hereditary Angioedema, I also suffered through an intestinal attack of the above condition. Three days later I was laid off from work, six days after that we received C4's official Autism diagnosis with a Developmental Coordination Disorder chaser. Three days after that Baby Girl came home (Yay!) and C4 got his 2nd or 3rd cold virus in a row (boo). Six days after that, The Husband had a stomach bug and I shifted from sleeping in my living room, to sleeping in my mother's living room. Three days after that, we had Christmas.  One day after that at about 9 in the evening, C4 broke his elbow.  Tomorrow, he'll have surgery to reduce the fracture as it must be absolutely perfect if he is to have full use of his elbow in the future.  As always, surgery with a cardiac kid is slightly more complicated and slightly more risky.

Here's how it happened: The Husband brought C4 up the stairs crying and I noticed his elbow was very swollen and just looked "off" to me.  I told The Husband I thought we'd have to take C4 to the ER for evaluation.  C4 said "This is just so uncivilized"  (we laughed, it was funny...) C4 was very upset and very much did not want to go see a doctor.  He's had X-Rays and they have a game plan.  They're going to admit him to the big hospital and will get a cardiac consult first thing tomorrow morning with surgery later in the day.

I'm home with Baby Girl.  This will be the first time C4 is inpatient and I cannot be with him.  We absolutely cannot risk Baby Girl picking up something at the hospital.  She's still very fragile and will be for quite some time.  C4 is also very prone to viruses, so that's something to look out for while he's there.  

I'm so torn, I desperately want to be there, but I know I cannot.  I need to hold my son and I cannot be there, I don't know how to find balance.  I really need things to stop spinning so quickly, it is impossible to regain equilibrium.

Baby Girl is doing a great job of gaining weight.  After a slow start her first few days home she jumped to gaining 73 grams a day on average.  Then, I ran low on Human Milk Fortifier and we had to go down to 2 fortified bottles a day, she only gained 34 grams a day, but that is still more than her goal of 20-30 grams per day.  So that's awesome.  She is just shy of 6 lbs 14 oz at this point.


Friday, December 19, 2014

I hate Cold/Flu Season

I'm in the living room, where I currently live.  Husband is upstairs with a belly ache that I can only hope is food poisoning or a really disagreeable lunch choice. C4 has had a resurgence of viral symptoms.  He's complaining of sore throat, but because he's already on a fairly powerful antibiotic for his impetigo, I am pretty safe in assuming it isn't strep throat.  His fever is low grade, which also trends viral.  He started showing symptoms about 2 days before Baby Girl came home, they came back on Thursday and tonight he briefly spiked that low grade fever.  The sore throat keeps him from eating, which is just peachy because his next weigh in is on Jan 14 and I'm running out of time to catch that up.

Speaking of weigh ins, we had a weight check for Baby Girl and she only gained 13 grams (slightly less than half an ounce) since Monday.  She'd gained a bunch in the couple of days since we'd been out of the hospital, then nothing for the last few days.  She'd been awake a LOT the last few days, so I'm hoping that is the cause and we'll be able to get her settled back down.  I just started using a new type of bottle for her fortified feeds, so hopefully that helps as well.  If it ends up being as awesome as it seems, I may even post a review :)

Baby Girl also had a follow up eye exam today.  Still absolutely horrifying, still refusing to watch the exam.  The good news is that she's now Stage 0, Zone 3, which is close to having the completed growth of those vessels.  Hopefully we'll only have to have one more eye exam 3 weeks from now when she reaches term (40 weeks gestation).

Since I'm soloing infant care, I should head off to sleep.

Baby Girl is 6 lbs 2 oz, which seems huge.  She's supposed to gain an ounce a day, but we didn't get there this time.  Hopefully next weigh in on Tuesday will show better results.

 

Thursday, December 18, 2014

So Very Exhausted

Life with a new born (even one that is 3 months old) is absolutely exhausting.  Baby Girl is a completely different experience than C4.  She eats, a lot.  It is fun, but super exhausting.  I'm getting about 3 hours of sleep total, usually in 3-4 different naps. We'll get a better pattern as time goes on (I hope).  I have only been able to pump about 4 times a day instead of the previous 8 times.  Baby Girl is nursing 8-10 times per day in addition to her 2 fortified bottles.

Baby Girl has her next eye exam tomorrow, we're not looking forward to it, she hates them SO much (totally understandably).

I miss knowing that someone with years of medical training and experience is always keeping an eye on her.  I miss the support and camaraderie I experienced daily in the NICU.  Also, I miss being able to hand night feedings off to someone else and getting 3-4 straight hours of sleep.  The next three months will be intentionally isolating as we strive to avoid RSV, the flu and any respiratory infections that could affect Baby Girl.  This is made especially difficult by C4's habit of continually becoming infected with the various viruses he comes in contact with.



We received some awesome holiday clothes from an awesome friend we made along this micro preemie journey.  The onsie even matches the PJs, how cool is that?!

Sunday, December 14, 2014

First Day Home

We have survived our first day home.  It has been a VERY long day.  Baby Girl is confused by the lack of noise and bustle around her.  It disconcerts her and she is having some trouble sleeping.  I've had 2 hours of sleep last night, plus a 1 hour nap and a half hour nap today. Husband has had about 4 hours total.

The schedule we're working to maintain is rough.  I'm supposed to pump after every feeding and we're giving 3 bottles a day.  I think Baby Girl is having a growth spurt as she's been cluster feeding this evening.  I had a lot of trouble believing she wanted to eat as much as she wanted as often as she wanted. I can't find any of my breastfeeding pillows, which is super annoying.

Husband is trying to sleep, I'm trying to pump real quick and I can hear Baby Girl waking upstairs... she's sleeping about 10 minutes, then crying again.  She's having a lot of spit up issues, but the NICU didn't like the word reflux... We'll be talking to our pediatrician and see what she thinks...

Our parents took turns with C4 yesterday and today, which gave us an opportunity to settle in a bit before adding to the chaos.  This is going to be CRA-Z!


Saturday, December 13, 2014

NICU Day 83 - And We're out of here!

Baby Girl only gained 5 grams yesterday.  I was prepared for some concern, however, Dr. Caldwell seemed quite happy overall.  She asked if we'd be comfortable going home today.  She told me it was up to us whether we stayed or left.  Going home today meant we needed to go home on a monitor.  I gladly accepted and at 5:00 this afternoon, Transportation Services wheeled Baby Girl and I out the doors of the hospital!  We don't have a bucket car seat, so I put her in a ring sling and wore her out of the hospital.  I am bummed I didn't think to get a picture!  We had a nerve wracking car ride home. I spent the entire journey staring intently at her mouth trying to decide if she was getting dusky.


Baby Girl was a bit chilled when she got home. We warmed her up with receiving blankets we put in the dryer and lots of skin to skin time.  It was pretty scary for me.  I miss hats.  They seemed like they did a good job of helping baby stay warm.

We talked to OT before we left and decided we're going to give her a pacifier at home.  She has a pretty deep groove in the roof of her mouth and a binky will help her flatten that out.

Thursday, December 11, 2014

NICU Day 82

So, this morning, lactation came and sat down beside me right after I finished feeding Baby Girl.  She said "I hear you don't want to do hind milk and your daughter is losing weight".  I replied "No, I have failed to remember to do hind milk 90% of the time, but she gained 2 days in a row with out it". I explained that when Dr. Caldwell shifted off of her case, we had a third day where her weight gain was under the 30 gram goal.  On that day, they shifted a bunch of stuff around.  They added a third fortified bottle, shifted her to human milk fortifier instead of Neosure, told me to start block feeding, and asked me to pump to do hind milk.  We were doing the first three, but were not consistent on the fourth.  With the first three in place, she gained 35 grams the first night and 55 the next.  I stopped pushing her to nurse as much as I had been and on day 3, she lost 10 grams.  I immediately went back to pushing her on her nursing so we'd go 25-30 minutes as of today.  Dr. Caldwell came back on her case today and thought all that extra stuff was over the top.  She's keeping the third bottle for now, but dropping the block feeding and the hind milk.  Baby Girl gained 55 grams tonight, so hopefully that will help.

We are getting apnea monitor training tomorrow and then, once we have the monitor, Baby Girl will be able to come to my room!  That will be awesome!

I'm starting to lose my voice, I think I'm allergic to the NICU room we are in now.  The symptoms get better when I'm in my room and worse when I go back to the NICU.  I wear a mask just in case it is a cold.  I'm washing my hands as frequently as possible.  I'm really hoping we can avoid a setback.


Weight: 2665 grams +55 grams (5 lbs  14 oz)
Milk: 885 (only 6 pumps)
Feeds: 61 ml 5 unfortified, 3 fortified to 24 calories pushed over 30 min
3 fortified feedings a day 24 cal human milk fortifier
Nursed: 5 times
Tri-Vi-Sol .5 ml
Day Nurse: Yet another Rachel
Night Nurse: Melissa

Wednesday, December 10, 2014

NICU Days 79, 80, 81

Sorry for the delay in posting, I've been rooming in and working on feeding Baby Girl.  After 2 fantastic days of weight gain, we lost weight today.  Baby Girl is getting a bit tired when she nurses, so we're working on trying to wake her up more.  I haven't been able to speak with the doctor in a few days, but hopefully I'll be able to speak with her tomorrow.

I've got a lot of post nasal drip, which I've had since I had Baby Girl, but it is much worse now.  I suspect allergies, but I am very worried it is a cold. Tonight's nurse suggested maybe I should go home and come back if I feel better... but the doctor seemed to disagree with that idea.  I will revisit that tomorrow.  I also plan to call my allergist.

Baby Girl had a "car seat test" today.  She has to pass one to go home, but this first test was not a

success.  She dropped her sats after about 30 minutes and they stayed down for longer than 20 seconds, which is a fail.

I'm very tired and very much in need of more rest.  My schedule originally had me up 2 out of every 3 hours overnight, which is not survivable long term.  Now, I'm just pumping on 2 of the overnight care shifts, which is helping.

Baby Girl did lose 10 grams tonight.  She remains 5 lbs 12 oz


Time for sleep round #1

Sunday, December 7, 2014

NICU Day 77 & NICU Day 78

Day 77:

Baby Girl nursed three times in a row!  I may start rooming in at the hospital as early as tomorrow.  They had some kiddos go home yesterday and a few more will go today, so we may not have to move, unless there is a flood of babies, which has happened before, so we'll see.

Baby Girl is 36 weeks gestation today, getting closer to going home every day!

Weight: 2480 grams 35 grams (5 lbs  7oz)
Milk: 1010 (33.66 oz)
Feeds: 61 ml 5 unfortified, 3 fortified to 24 calories pushed over 30 min
2 fortifications with Enfamil human milk fortifier, 1 with Neosure
Nursed: 2.5 nursing session out of 3 total attempts
Tri-Vi-Sol .5 ml
Day Nurse: Becky
Night Nurse: Melissa

Day 78

Baby Girl seems to be doing so well at nursing that they have had me move in to the hospital so that I can nurse her more often.  C4 saw Riley for the first time today.  He wasn't all that interested.


Weight: 2505 grams 25 grams (5 lbs  8 oz)
Milk: 1025 (33.66 oz)
Feeds: 61 ml 5 unfortified, 3 fortified to 24 calories pushed over 30 min
3 fortified feedings a day 24 cal human milk fortifier
Nursed: 3 times
Tri-Vi-Sol .5 ml
Day Nurse: Janette
Night Nurse: Melissa

Friday, December 5, 2014

NICU Day 76

Today was a pretty quiet day.  We had two great nursing sessions and lots of cuddle time.  Things are pretty busy in the NICU and we may end up having to move to another hospital to help clear room for sicker babies.  We'll see how things go.  I failed to get this update out in a timely fashion, so I'm backdating it and posting it now!



Weight: 2470 grams 25 grams (5 lbs  7oz)
Milk: 1010 (33.66 oz)
Feeds: 62 ml 5 unfortified, 3 fortified to 24 calories with  Enfamil human milk fortifier
Nursed: 2 nursing session out of 2 total attempts
Poly-Vi-Sol .5 ml
Day Nurse: Becky
Night Nurse: Melissa (A different one)

Thursday, December 4, 2014

NICU Day 75

Baby Girl had an eye exam this morning so I made sure to get to the hospital early.  I had forgotten they do rounds in the morning so I'm going to try and get there by 9 every day.  The eye exam was as traumatizing as usual.  If you are curious, look up ROP eye exam pictures, but it is horrible looking, so don't look if you are easily horrified.  I choose not to watch the exam, because I have trouble looking at someone else's baby going through it, I can't imagine seeing my own.  I rescue her away from them as soon as I can after the procedure is finished.  Results were stage 0 (awesome) and she doesn't have to have another exam for 2 weeks.  She was so stiff when I first held her, she just couldn't bring herself to relax.  It took a good 5 minutes before she relaxed her hands and body and cuddled back into me.  Once she was calm and relaxed again, I changed her diaper and took her temp.  Baby Girl started cueing.  Cueing is when the baby indicates that he or she wants to eat by sucking on their hands, licking their lips, rooting and crying with hunger.  The stronger the cues, the more likely you are going to be allowed to breastfeed.  Baby Girl did actually breastfeed and did very well, which is not expected after the trauma and exhaustion of eye exam day.  All in all, it was a great session.

I had my nurse call lactation to discuss my concerns with feeding.  I found it very upsetting that we were expending so much effort on bottles when breastfeeding hasn't been fully established.  No one understood why the orders were written to require bottle feeding for the fortified feeds since we weren't ready to go home yet.  Lactation talked with the physicians who were assigned to Baby Girl for the day and they said they thought we were further along and agreed to back down on the bottle feeding to conserve energy for nursing.  Once Baby Girl can nurse three times consecutively without having to be supplemented by NG tube, we'll talk about adding things back in (and I might even get a room).

As I pulled up to the hospital I got a text from one of my coworkers indicating they had been laid off.  As I headed into the hospital, I started getting updates, some of which indicated to me that the only reason I wouldn't have known about this ahead of time would be because I was to be included in the layoffs.  I called HR and confirmed I did indeed need to come in to gather paperwork and my personal belongings out of my office.  I worked hard to ensure the layoff was as painless as possible for our HR director, who I greatly respect.  One of my coworkers helped us get everything out to the car and loaded my heavy stuff for me.  It was all very low key and mellow.  I'm looking over the paperwork they gave me and I need to get it back to them sometime just before my next birthday.  All in all, not an unpleasant layoff. I tried to say hi to our new CEO, but he ducked his head and wouldn't look at me or acknowledge me, that part was a little strange.

This week has been a bit of a roller coaster, but all we can do is keep riding, so Weeeeee!

Dark and quiet, eyes are dilated, so no light today.


Weight: 2445 grams 30 grams (5 lbs  6oz)
Milk: 1010 (33.66 oz)
Feeds: 61 ml 5 unfortified, 3 fortified to 24 calories pushed over 30 min
2 fortifications with Enfamil human milk fortifier, 1 with Neosure
Nursed: 2.5 nursing session out of 3 total attempts
Tri-Vi-Sol .5 ml
Day Nurse: Carrie
Night Nurse: Melissa

Wednesday, December 3, 2014

NICU Day 74

Baby Girl didn't gain weight tonight.  There's a lot of pressure for her to gain, they may decide she can't breastfeed, which will make me very sad.  This part is really hard, I'm hoping she outgrows it.  We'll see what the doctors say tomorrow. They have her taking 3 bottle feedings, I'm going to push back against that, it seems that is taking away from the opportunities to breastfeed and decreasing the chances we'll be able to successfully breastfeed vs bottlefeed.




Weight: 2415 grams no change (5 lbs 5 oz)
Milk: 107 (40.5 oz)
Feeds: 52 ml 6 unfortified, 2 fortified to 24 calories pushed over 30 min
Nursed: 2.5 nursing session out of 2 total attempts
Tri-Vi-Sol .5 ml
Day Nurse: Rhonda
Night Nurse: Melissa

Tuesday, December 2, 2014

NICU Day 73

I spent an enjoyable day with Baby Girl and we tried nursing 3 times in a row.  We ended up supplementing the second feeding.  The fact that she gained (even though it was only a little bit) is great considering she's getting 5 unfortified feedings and she's having to put forth effort to eat.  Today she will have eaten some or all of her feedings 6 out of 8 times, which is awesome!  The nurses keep reminding me that even though she's come so far, she still shouldn't have to do any of this yet.  Feeding is going to take time and patience.

I mentioned my Snuza Motion Monitor when I spoke with the doctor today about Baby Girl possibly coming home on a monitor.  She said that I shouldn't count on that monitor and that babies die even on an apnea monitor, that SIDS is more than just breathing and heart rate and I shouldn't depend on the monitors.  I didn't find this very helpful.  I did point out that I'd also take the other safe sleep precautions such as room temperature, running fan, sleeping in a separate bassinet in the same room with me, etc.  She agreed those were all also important.  It was later pointed out to me that she may have thought I would take the monitor as safety enough and skip the other SIDS prevention techniques.  As my nurse said "it's not like you were going to lay the baby down in a soft bed with 17 blankets and a teddy bear".  I mentioned my belief that doctors are in fact just people with opinions when it comes right down to it.

We agreed that it is important to make sure everyone involved in someone's care understands the WHY of their actions, rather than just the what.  C4 once had a nurse pick him up by the shoulders after open heart surgery.  When I reminded her that we were not to lift him under the arms, so we could protect his sternum which was held together by wire, she pointed out she lifted him by his shoulders, not under his arms.  Now, the point was to prevent his body weight from pulling on his chest.  The goal was to always support his weight in his rear and never with his upper body, but she got stuck on the "not under arms" and didn't think about the WHY.  It is easy to have that happen anywhere in life and it is something worth guarding against.


I thought this was super cute.  It was like she was hugging her pacifier.


Weight: 2415 grams 10 grams (5 lbs 5 oz)
Milk: 107 (40.5 oz)
Feeds: 52 ml 6 unfortified, 2 fortified to 24 calories pushed over 30 min
Nursed: 2.5 nursing session out of 3 total attempts
Tri-Vi-Sol .5 ml
Day Nurse: Sarah
Night Nurse: Stephanie!

Monday, December 1, 2014

NICU Day 72

I officially went on leave today so I can spend all my free time at the hospital working on feeding with Baby Girl.  I'm hopeful that she'll build her stamina and be able to get rid of that darned NG tube soon!  The Nurse Practitioner who saw her today didn't like her weight gain, so she added a third fortified bottle.  Today's weight gain does not include that third bottle.  I'm hoping we'll be able to drop it back out and go back to just 2 bottles and the rest of the time nursing.

We nursed at 2:30 and it went OK, but she seemed tired already.  Then at 5:30, we couldn't get her to nurse at all.  She was just done in, so she slept and got her feeding through the NG tube.  This will be the hard part, feeding always is :/

Today was a weird day. I was diagnosed with a fairly rare genetic condition. I'm still in denial.  It will be interesting to learn more about the condition.  The Husband's company was purchased by another company.  It will be interesting to see what they do with it (and his job).  My Company's CEO retired and the new leadership was promoted from within.  It will be interesting to see what they do with the company.




Weight: 2405 grams 50 grams (5 lbs 5 oz)
Milk: 1215 (40.5 oz)
Feeds: 52 ml 6 unfortified, 2 fortified to 24 calories pushed over 30 min
Nursed: 1 nursing session out of 2 total attempts
Tri-Vi-Sol .5 ml
Day Nurse: Sarah
Night Nurse: Michelle

Sunday, November 30, 2014

NICU Day 71

I had a good visit with Baby Girl today.  She took two bottles and breastfed twice.  It is all very exhausting, but I think she's building her endurance. It was really hard to leave her tonight.  The NICU is very full and the nurses are all a bit stretched thin.

I heard the nurses talking about calling Now I Lay Me Down To Sleep and I saw lots of people crying :(  I don't know who lost a baby, but someone did and it is very sad.  It was hard thinking about that possibility and the reality that that mom must be living right now.



Length: 42.1 cm (+2 cm)
Head Circumference: 30.2 (+.2 cm)

Weight: 2355 grams -5 grams (5 lbs 40z)
Milk: 1215 (40.5 oz)
Feeds: 52 ml 6 unfortified, 2 fortified to 24 calories pushed over 30 min
Nursed: 2 nursing sessions out of 3 total attempts
Tri-Vi-Sol .5 ml
Day Nurse: Sarah
Night Nurse: Michelle

Saturday, November 29, 2014

NICU Day 70

Baby Girl reached 35 weeks gestation today.  I went to the hospital with the intention of feeding her twice, however, we realized that she is just too tired if I do two back to back feedings, so I'll need to talk to the doctor about that tomorrow.  Baby Girl continues to have roller coaster desats where she goes from the 90s to the 70s or lower over and over again.  I'd like to know if there is a pattern to the behavior.  Earlier I thought it was an hour after I started holding her, then I thought maybe it was related to her eating, I just don't know.  I suspect we may stay on a monitor even after we come home.  The most disconcerting part is she doesn't LOOK like her sats are low.  She's all pink even when she's registering in the 60s, which is very disconcerting.

Look at the neat picture Google made for me:



Weight: 2350 grams 50 grams (5 lbs 3 oz)
Milk: 1070 (35.7 oz)
Feeds: 52 ml (2 of which are fortified to 24 calories_ pushed over 30 min
Nursed: 1 time 25 minutes each
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Day Nurse: Carrie
Night Nurse: Alisha

Friday, November 28, 2014

NICU Day 69

I got to the hospital at 11 today.  On the way there, I spoke with her doctor who informed me that she's now on 6 unfortified feeds a day.  This means I could potentially breastfeed 6 times a day.  I did breastfeed 4 times today.  The rule is that if she nurses for 8-10 minutes, they consider it a full feeding and they do not supplement.  4-5 minutes means they will supplement 1/2 a feeding.  I find it so hard when they ask if they should supplement. On one hand, I'm trying to trust her to eat what she needs to eat, though she could be too tired and not get that done and need the supplement.  On the other hand, if she did eat enough and I have them supplement her with full or half, I could be setting her up for pain or even vomiting.  I really want my Medela Baby Weigh scale back.  It is designed to detect the weight change from before and after feeding and tell you how much milk the baby ate. I'm going to ask about it tomorrow.

At this point, I pretty much need to spend as much time as possible at the hospital. This creates something of a conundrum, since we still have lots to do to get the house ready for her.  Everything is crazy!  Hopefully the uncertainty will decrease soon. I'm sad she lost weight today.



Weight: 2310 grams -10 grams (5 lbs 1 oz)
Milk: 1045 (34.8 oz)
Feeds: 49 ml (2 of which are fortified to 24 calories_ pushed over 30 min
Nursed: 4 times 15-25 minutes each time
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Day Nurse: Sarah
Night Nurse: Alisha

Thursday, November 27, 2014

NICU Day 68

Baby Girl had a great day today.  I talked with the doctor about my suspicions that the new human milk fortifier was causing her issues in the rear.  The doctor said we could change to a formula called neosure now, rather than waiting until we go home to decide to keep the liquid fortifier or change to the powder.  So we made that change and I'm hoping to see her rear heal very soon.

Baby Girl is at 4 unfortified feeds a day.   Her weight gain was very small today, but only half her feeds were at the new 49 ml volume.  We'll see what the doctors say today regarding her very modest weight gain.

Baby Girl was having a LOT Of alarms overnight and into the morning.  She started alarming a LOT after the first time I fed her.  The nurse and I were very perplexed by the numbers compared to how she looked.  After holding her upright and checking her probe, we finally changed the probe, even though it looked fine.  Her sats immediately improved and looked a lot better, so we believe it may have been defective.  We'll see which of the alarms they hold against her of the 11 that she had that morning.

I left the hospital and came home to enjoy a delicious Thanksgiving meal with The Husband's parents.  We forewent a large gathering to help ensure we stayed healthy this holiday season.  I REALLY missed baby girl this evening.  I hope she comes home soon.  I did some Black Friday online shopping at Carters and found a fantastic clothing collection in Navy and Grey for baby girl.  I bought quite and found an additional 30% of coupon code!



Weight: 2320 grams 5 grams (5 lbs 1 oz)
Milk: 1045 (34.8 oz)
Feeds: 49 ml fortified to 24 calories pushed over 30 min
Nursed: once for more than 30 minutes
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Day Nurse: Kelly
Night Nurse: Natalie

Wednesday, November 26, 2014

NICU Day 67

Baby Girl had a good day. I tried to feed her twice, but she was too tired the second time. Lesson learned, wait until she is angry to try and feed her.

She seemed to have a lot of alarms, possibly because they had oxygen on her butt to help heal it, which kept her on her stomach a lot. Poor baby.  The contraption they used was very amusing, I took pictures.  Note the Styrofoam cup with the oxygen tube coming out of it in the vicinity of her nether regions.  We are high tech!



Weight: 2315 grams 35 grams (5 lbs 1 oz)
Milk: 1045 (34.8 oz)
Feeds: 45 ml fortified to 24 calories pushed over 30 min
Nursed: once for more than 30 minutes
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Day Nurse: Sarah
Night Nurse: Natalie

Tuesday, November 25, 2014

NICU Day 66

Baby Girl is back off nasal cannula and was free to start nursing again. I fed her at the 5:30 and 8:30 feedings this evening, it went very well!  She did lose a bit of weight, we'll see what the doctor says tomorrow on that one.  I assume we need to bump up the amount she's eating.  I really miss my Baby Weigh scale from Medela, it told me exactly how much Charlie ate when he breastfed.  It is a crutch and I shouldn't use it again (unless medically needed again)... but I miss it anyway.

Baby Girl's butt is still broken down and looking very painful, I still blame the new fortifier.  We're doing as much air time as we can in the hopes that it will heal up.  We may need to go to blowing oxygen on it, but she really hates that, so I'm hoping it will get better without that.

After her last feeding, we cuddled for a bit and her O2 sats were at 100% without any respiratory support for the first time I've seen... These monitors can make you crazy, but it will be hard to leave them behind.




Weight: 2270 grams -25 grams (5 lbs)
Milk: 1045 (34.8 oz)
Feeds: 45 ml fortified to 24 calories pushed over 30 min
Nursed: twice for more than 30 minutes each time
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Day Nurse: Rhonda (Congratulations on your new job, but you will be missed!)
Night Nurse: Natalie

Monday, November 24, 2014

NICU Day 65

Baby Girl had a bit of a setback after getting her 2 month shots.  She's back on low flow oxygen to help her while she gets past the first 48 hours or so after her vaccinations.  We couldn't nurse today, but we had a good cuddle.  She's also still got a very painful, red bum.  They aired it out a bit and blew oxygen on it for a while.  It started after they changed fortifier, so I wonder if that is related.  When I left, Baby Girl was getting some more air time.  She scooted across the bassinet to the top while on her belly, she's mighty!

I'm starting to worry about her being left to cry in her bassinet.  There is one nurse to 4 babies, she can't be there for all of them at once.

I thought it was pretty cool that our nurse's middle name is the same as Baby Girl's and she also received it the same way our baby girl received her middle name.



Weight: 2295 grams +25 grams (5.1 lbs)
Milk: 1175 (39 oz)
Feeds: 45 ml fortified to 24 calories pushed over 30 min
Nursed: on hold for a day
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Day Nurse: Linsie
Night Nurse: Sarah

Sunday, November 23, 2014

NICU Day 64

I left the house around 10:45 to go see baby girl today.  I arrived just in time to do cares.  First, I took her temp, which, on the second attempt was warm enough at 36.4 (36.3 is the minimum).   Next, I started to change her diaper.  She had an enormous bowel movement (seriously, girls are way harder to clean up than boys!).  As I cleaned her up, I noticed blood on the wipe :(  The spot of breakdown she had has gotten worse.  Poor baby is very sad.  We're using a special compounded ointment that the hospital makes that will hopefully help.  We also are having her sleep on her belly without a diaper on.  Hopefully some quality open air time will help her rear.  Getting air time and keeping her warm has been an interesting.  Warmed blankets are awesome!  Lori reminded me we can use our dryer to make our own. Pro Tip: apparently microwaves catch blankets on fire.

She was VERY ready to eat after cares.  We settled in to nurse and once she got organized she nursed for about 28 minutes.   It was very cool!  I did talk to lactation about her tendency to "click" during letdown. We're thinking it is either a latch issue or a letdown issue.  After she got done eating, we cuddled up for about an hour then I let her sleep in her bassinet for the remaining 45 minutes before her next round of cares.

Baby Girl had to get her shots during this care round.  The shots were overstimulating and caused her to shut down.  I cuddled her and we spent a couple of hours doing Kangaroo Care after the shots.  I did try and let her nurse one more time, but she was still shut down from the shots.  I didn't want to stress either of us out, so we decided to give her a tube feeding instead and I pumped.



Length: 40.5 cm (+1 cm) = 15.94 inches
Head Circumference: 30.4 (+.7 cm) = 11.96 inches

Weight: 2270 grams +85 grams (5 lbs)
Milk: 1305 (43.5 oz)
Feeds: 43 ml fortified to 24 calories pushed over 30 min
Nursed: 1 nursing session, 28 minutes
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Day Nurse: Linsie
Night Nurse: Sarah

Saturday, November 22, 2014

NICU Day 63

Baby Girl is at 34 weeks gestation today.  Charlie woke up with a fever, so I'm trying to be extra careful.   I did go see her, but I showered right before I left and walked out the door without even sitting down to put my shoes on.  Trying to balance between my fear of getting her sick and her need to have her family with her is very hard.  Baby Girl nursed today for over 20 minutes.  We didn't give her feed that time.  Since she gained weight, apparently she had enough that feeding to cover.

Baby Girl has graduated to a bassinet.  She's maintaining her temperature and doing well.  Now that she's in the bassinet, she must sleep on her back without the incline.  She snuggled up under an awesome blanket from the JEDI crew... THANK YOU!!



Weight: 2185 grams +55 gram change (4lbs 13 oz)
Milk: 1165 (38.83 oz)
Feeds: 43 ml fortified to 24 calories pushed over 30 min, or breastfeed more than 10 minutes
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Day Nurse: Lori
Night Nurse: Kathy

Friday, November 21, 2014

NICU Day 62

Baby Girl decided she was done with nasal cannula today, so she removed hers. They decided to let her try without it for a while and she's about the same as she was with it on, so far.  We shall see how she does.  I did get to feed her again today and Baby Girl likes to EAT.  Daddy cuddled her for an hour or so as well.  I like the new NICU area, it is lots quieter and very peaceful.



Weight: 2130 grams 0 gram change (4lbs 11 oz)
Milk: 1240 (41 oz)
Feeds: 40 ml fortified to 24 calories pushed over 30 min, or breastfeed more than 10 minutes
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Low Flow 21% oxygen, 1 Liters
Day Nurse: Lori
Night Nurse: My

Thursday, November 20, 2014

NICU Day 61

Baby Girl had a very busy day today.  First, she had her eye exam this morning.  Everything still looked good, so they are going to let her go 2 weeks before her next check.  Next, I came to see her and we tried to nurse a bit.  She latched for a few seconds at a time, but she was so exhausted from her eye exam, that she really slept through everything.  I also had an appointment for another massage lesson, so we did that as well.  The massage went well and I think it went a long way to making her feel better after the super stressful eye exam.  Because Baby Girl has to have her eyes dilated before they can do the exam, we keep things very dark and quiet on eye exam day.  Today's picture reflects these facts.

Then, this afternoon I got a call from Lori, Baby Girl's primary nurse and one of my favorite people :)  She was very careful to start with telling me Baby Girl was fine, then went on to explain the reason for her call. Baby Girl is doing so well and they have so many babies, that they decided to move her to their step down NICU.  She's going to be in the new NICU room with 3 other babies.  That NICU is much quieter.  There are far fewer alarms, dings and bells, which will be good.  We'll continue to work on feeding and growing.  I look forward to seeing her new space tomorrow.



Weight: 2130 grams -10 grams (4lbs 11 oz)
Milk: 1200 (40 oz)
Feeds: 40 ml fortified to 24 calories pushed over 30 min,
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Low Flow 21% oxygen, 1 Liters
Day Nurse: Lori
Night Nurse: Sherry

Wednesday, November 19, 2014

NICU Day 60

Dr. Caldwell called this morning around 10:15 and started talking about things like "Home feeding schedules".  They took her off of the liquid protein because she's gaining weight at a good pace.  If she continues to have minimal alarms, they will also be taking her off the caffeine sometime around Saturday.  I asked if I'd be able to nurse then as well and she said I could nurse now if I wanted to.  So, I decided to go to the hospital over lunch.  I arrived a few minutes late for the 11:30 feeding and Baby Girl was very ready for food.  As soon as we laid her on the pillow in my lap, she latched on and began nursing.  I had pumped just before I left the office to give her a slower flow, she didn't seem to appreciate that very much.  I worked to help her get a faster flow and she nursed well.  Lori was pleased, as was I.  Right now, we'll nurse once a day, hopefully that will increase to twice a day soon.  Kangaroo care remains very important, so we're trying to balance the two.



Weight: 2140 grams +50 grams (4lbs 11 oz)
Milk: 1215 (40.5 oz)
Feeds: 40 ml fortified to 24 calories pushed over 30 min,
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Low Flow 21% oxygen, 1 Liters
Day Nurse: Lori
Night Nurse: Alisha

Tuesday, November 18, 2014

NICU Day 59

Daddy thought he was going to get to see Baby Girl today, but a tragic toe injury prevented the visit.  I did go see and cuddle Baby Girl and we had a very good visit.  She's now on 1 liter, low flow, which means we may try breastfeeding very soon.  I'm excited and nervous.



Weight: 2090 grams +20 grams (4lbs 10 oz)
Milk: 1060 (35.33 oz)
Feeds: 39 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Low Flow 21% oxygen, 1 Liters
Day Nurse: Rachel B!!
Night Nurse: Brittany

NICU Day 58 (And the missing 57)

I had a great visit with Baby Girl today, we cuddled for a bit and I gave her more fresh milk.  She's still on High Flow, 2 liters, they may start weaning her down soon.  If they do, when she gets to one liter, she can try breastfeeding.  She'll also have to get her first round of shots.



Day 57 - Weight: 2010 grams +70 grams (4lbs 7 oz)
Day 58 - Weight: 2070 grams +60 grams (4lbs 9 oz)
Milk: 1060 (35.33 oz)
Feeds: 34 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
High Flow 21% oxygen, 2 Liters
Day Nurse: Rachel B!!
Night Nurse: Stephanie

Sunday, November 16, 2014

NICU Day 56

We tried to do another massage today, but Baby Girl wasn't really feeling it.  After she spit up, I decided to just hold her and keep her more upright under the assumption that we might be experiencing a bit of reflux.  She went back on high flow today, we'll see how she is by morning.  She's looked good so far.  One Brady earlier in the evening, but it was self resolved.



Length: 39.5 cm (+1 cm) = 15.55 inches
Head Circumference: 29.7 (+1.7 cm) = 11.60 inches

Weight: 1930 grams +10 grams (4lbs 6 oz)
Milk: 1155 (38.5 oz)
Feeds: 34 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
High Flow 21% oxygen, 2 Liters
Day Nurse: Michelle
Night Nurse: Stephanie

Saturday, November 15, 2014

NICU Day 55

Husband and I went to see Baby Girl together today.  C4 stayed with Mimi and Papa, I'm sure he's having a blast.  While we were at the hospital, I gave Baby Girl a massage and then she cuddled with her daddy for over an hour.

Her respiratory rate was a little high today, so they didn't wean her down further on her CPAP.  Maybe she'll have settled by tomorrow, we'll have to see.

She did gain quite a bit of weight today (3.3 oz).  I expressed some concern, but her nurse assured me it isn't a totally worrisome weight gain.  She said she didn't look super puffy, she just looked like a bit of a chunk.  She got some oral stim with her 8:30 feeding (drops of breastmilk around her binky) and she loved it.  Her nurse and I agreed she'd probably be quite the eater once she's set free.



Weight: 1920 grams +100 grams (4lbs 5 oz)
Milk: 1210 (40.33 oz)
Feeds: 34 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21% oxygen, PEEP 4
Day Nurse: Michelle
Night Nurse: Stephanie

Friday, November 14, 2014

NICU Day 54

I had a meeting that sent me to see Baby Girl a bit late today.  When I arrived, I found we had Rachel today.  Rachel, like Lori tends to push me a bit. So, I picked Baby Girl up out of her isolette today for cuddles.  We had a great cuddle, Baby Girl was apparently very relaxed and "moved" by our cuddle.

Baby Girl is having a tiny bit of skin break down on her nether regions, so, when I put her back I got to change that enormous diaper.  As soon as I started changing her, enormous grew to gigantic as she fountained out even more poop.  So, we switched to a second clean diaper... which she immediately started peeing in.  At this point, we gave up as her official care time was only an hour away and she needed to get back to resting.

Dr. Dang weaned Baby Girl down to a PEEP of 4 this afternoon and increased her feeds to 34.  If she tolerates the decreased support over night, they will be trying high flow again tomorrow.  Baby Girl has had far fewer alarms this last week and a lot more time on 21% oxygen, so I'm hopeful.



Weight: 1820 grams +60 grams (4lbs 2 oz)
Milk: 1210 (40.33 oz)
Feeds: 34 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21% oxygen, PEEP 4
Day Nurse: Michelle
Night Nurse: Erin


Thursday, November 13, 2014

NICU Day 53

Baby Girl had her second eye exam today.  I got a better definition of where she is on her ROP (Retinopathy of Prematurity) She is currently stage 1 zone 2.  Which, as they said before, is "expected for her gestational age".  I was late getting out of work this afternoon, but we did have a cuddle after her 5:30 feeding.  Baby Girl LOVES dinner time :) We have high hopes for her eating habits.

She was on room air most of today, except for one patch on her back where she bounced up to 25% then weaned right back down.  They will probably try high flow again tomorrow or Saturday.  Given she had an eye exam today, this was not the day to try something new.



Weight: 1820 grams +10 grams (4lbs)
Milk: 1210 (40.33 oz)
Feeds: 31 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21% oxygen, Peep 5
Day Nurse: Michelle
Night Nurse: Erin

Wednesday, November 12, 2014

NICU Day 52

The Nurse Practitioner who called today said Baby Girl continues to do great!  The CBC they ran showed her Hematocrit had increased, which shows that Baby Girl is making her own red blood cells fast enough to stay ahead without needing a blood transfusion!  She's also stayed almost entirely on 21% oxygen excluding a couple of brief bumps to about 24% when she was on her back, or out getting her first massage.  Yes, that's right, I'm learning baby massage and she LOVES it!  She is also VERY interested in eating.  Typically she starts fussing 20 minutes or so before her scheduled eating time at which point she really loves to have her pacifier, she's very ready for food.


Weight: 1810 grams +60 grams (4lbs)
Milk: 1155 (38.5 oz)
Feeds: 31 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21% oxygen, Peep 5
Day Nurse: Michelle
Night Nurse: Erin

Tuesday, November 11, 2014

NICU Day 51

I didn't get to see Baby Girl for long today.  I had to run to a doctor's appointment and apparently, The Husband is supposed to get to hold the baby sometimes too... He did go hold her tonight for about an hour.  When he came home he expressed his enjoyment of the "good drugs" the baby provides (oxytocin is awesome).



Lab: Complete Blood Count (checking for anemia)

Weight: 1750 grams +20 grams (3lbs 14 oz)
Milk: 1262 (42 oz)
Feeds: 31 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21% oxygen, Peep 5
Day Nurse: Liz
Night Nurse: Erin

Monday, November 10, 2014

NICU Day 50

Baby Girl is 7 weeks old today (32 weeks, day 3 gestational age) and she is still in eat and grow mode.  She's doing very well as far as her oxygen needs go.  Today when I came in, she was on 21% oxygen (room air, what we all breathe every day) and she was high satting (her sats were above 96%). When I flipped her onto her back to change her diaper, I found her nasal cannula was only in one nostril.  So, that was pretty good. She would have probably tired of it eventually, but it is still impressive.

Today's outfit was SUPER cute... there were ruffles.. on her butt.  And the little feet had cloth mary janes on them.  It was adorable!



Weight: 1730 grams +30 grams (3lbs 13 oz)
Milk: 1115 (37.2 oz)
Feeds: 31 ml fortified to 24 calories pushed over 30 min,
1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-25% oxygen, Peep 5
Day Nurse: Liz
Night Nurse: Lindsey

Sunday, November 9, 2014

NICU Day 49

Baby Girl wasn't quite ready to be off CPAP yet.  She started having more desats, so they took her off high flow and put her back on CPAP at about 6 this morning.  They will try high flow again in about 5-7 days.

Baby Girl and I had a great visit today, we snuggled and napped for about an hour and a half.  I think we should have put her back at about an hour and fifteen minutes, she got a bit over stimulated.  Liz says she's done well this evening though, no major desats or alarms.

Sunday's Measurements:

Length: 38.5cm / 15.15 inches (+2 cm)
Head Circumference: 28 cm / 11 inches (+1.2 cm)

Weight: 1700 grams +80 grams (3lbs 12 oz)
Milk: 1195 (39.7 oz)
Feeds: 27 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Liz
Night Nurse: Lindsey

Saturday, November 8, 2014

NICU Day 48

Baby Girl turned 32 weeks today. In honor of this momentous event the doctor decided to shift her from CPAP to High Flow Oxygen.  The Respiratory Therapist came in while I was holding her and asked if I wanted it shifted now, or if I wanted to wait until after I was done holding her.  I opted to have her off CPAP while I held her.  This worked out very well.  We cuddled for about an hour and a half today and she maintained her sats very well at 23% oxygen.  She removed her nasal cannula several times.  I noticed because she occluded it with her nose, otherwise, I wouldn't have, her sats did not waver when she removed them.  This seems like a pretty good sign.  She did have one Brady while I was holding her.  If I drift toward sleep, she sometimes tries to sneak down for a drink, even though she's really not ready for that.  When she wriggles down, she ends up in a bad position and it causes her to desat/brady. Not a fun way to wake up.

We did start talking about practice breastfeeding and actual breastfeeding today.  When Baby Girl gets down to 1 liter on her oxygen, we can begin practice breastfeeding.  If she doesn't achieve that before 34 weeks, at 34 weeks we can start trying to breastfeed for nutrition.  Lactation will be supporting us through this endeavor.

In other news, C4 (finally picked a real nick name for him) is on week 3 of potty training himself. He has a couple of accidents during the week, but usually does a pretty good job getting to the potty.  I'm glad he decided he was ready for underwear.  We haven't had the same luck with poop as we had with pee, he'd pretty much gone in his pants every time... until today.  Early this afternoon, he walked up to The Husband and said "come see what I did".  Then, The Husband called me to come see what C4 did... he finally pooped in the potty!  No idea if this will last, but he figured it out this time and he was VERY proud of himself!

Weight: 1620 grams -10 grams (3lbs 9oz) - had a Huge, Huge, Huge diaper just before weigh in
Milk: 1182 (39.4 oz)
Feeds: 27 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
Hi Flow, 21%-30% oxygen, 2 liters
Day Nurse: Corree
Night Nurse: Sherrie

Friday, November 7, 2014

NICU Day 47

Baby Girl had another day of eating and growing on day 47.  She gained 20 grams and didn't have many As and Bs.  The NICU in general was pretty stressed again yesterday with 5 new babies coming in.  We had a neighbor again for a little while, but they were able to get a room cleared out so he could be with his twin instead of in with us.  Listening to an admitting process was interesting.  We had a good cuddle and Baby Girl stayed at 21% oxygen the whole time.  I'm learning that she wriggles into a position that compromises her airway, so I'm getting better about catching on and adjusting her position.


Weight: 1630 grams +20 grams (3lbs 9oz)
Milk: 1141 (38.33 oz)
Feeds: 27 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Stephanie
Night Nurse: Kimberli


Thursday, November 6, 2014

NICU Day 45 & 46

Sleep deprivation is taking its toll.  I didn't finish my post yesterday.  So I combined it with today's, fell asleep before I finished it and here we are.

We're really in something of a holding pattern for the next few days.  We're waiting until she hits 32 weeks gestation and then they will try weaning her down off her CPAP. Once she is off CPAP, we can try "practice nursing".  Practice nursing is when she nurses after I've pumped so she won't get very much milk.

Yesterday when I arrived, Children's Mercy Critical Care Transport was picking up a very sick baby for transport to their higher level NICU.  The loved ones were crying, it was very sad, I cried for them a bit.  I assured them CMH was a wonderful place with wonderful people, they thanked me, but I'm sure this isn't something they ever wanted to do or know about.

They moved our neighbor to another hospital today because they needed more beds at our hospital, things are crazy busy right now.  I believe they had at least 5 new admits today.  I met a mom who had triplets last week, that sounds exhausting.

Baby Girl had her first ROP (Retinopathy of Prematurity) eye exam on the 6th.  She'll have them every Thursday.  Her eyes looked "good for her gestational age".  She has an 80% chance of developing ROP to some degree given her weight and age at birth.

Baby Girl got an amazing sweater and a couple of hats from an amazing person.  They were crafted with great care and skill and I think she looked adorable in them.


November 5:

Weight: 1550 grams +50 grams (3lbs 5oz)
Milk: 1030 (34.33 oz)
Feeds: 27 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Lindsey
Night Nurse: Megan

November 6:

Weight: 1610 grams +60 grams (3lbs 9oz)
Milk: 1150 (38.33 oz)
Feeds: 28 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Lindsey
Night Nurse: Kimberli

Tuesday, November 4, 2014

NICU Day 44

Another quiet day of feeding and growing.  We had a great visit and cuddle.  Baby Girl is very sure when it is time to eat and she announces it very clearly if anyone is late.  She gets bigger every day.  Her isolette temperature is now 28C which means she can graduate to a crib as soon as she's ready to come of CPAP.  We will trial being off CPAP once she reaches 32 weeks gestation (which happens on Saturday).

All of the labs they did looked great.  Caffeine was increased to account for her weight gain.

Weight: 1500 grams +40 grams (3lbs 5oz)
Milk: 1175 (39 oz)
Feeds: 27 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Lindsey
Night Nurse: Megan

Monday, November 3, 2014

NICU Day 43

Baby Girl continues to feed and grow.  It was Daddy's turn for skin to skin time and they had a good cuddle.  Baby Girl apparently spent some time grabbing his chest hair.

C seems to be running a low grade fever at around 99 degrees.  We'll see how he's feeling in the morning.

I didn't hear from anyone for an update today, I'll follow up if I don't get one tomorrow.
Labs tonight: Blood Gas, Nutrition Panel and CBC

Weight: 1460 grams +40 grams (3lbs 2oz)
Milk: 1170 (39 oz)
Feeds: 27 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Rhonda
Night Nurse: Megan

Sunday, November 2, 2014

NICU Day 42

Baby Girl continues to do amazingly well.  Today in awesome, when Baby Girl snuggled down onto my chest for her 2:30 feeding, she immediately started rooting for food.  I'm so excited to have her show interest in breastfeeding (and for that matter eating by mouth at all).  She tasted some breast milk from a 1 ml syringe and sucked on her pacifier while taking her feed. 

Dr Caldwell called with updates
  • Adjusted feed up to 27 due to weight gain
  • Blood gas looked great. Giving her one more week on CPAP and then trying to shift to nasal cannula, if she agrees with that plan, that will head is toward practice nursing in a couple weeks...

Sunday's Measurements: 

Length: 36.5cm / 14.5 inches (+2.3cm) 
Head Circumference: 26.8 cm / 10.5ish inches (+1.5 cm)

Weight: 1420 grams +40 grams (3lbs 2oz)
Milk: 1191 (39.7 oz)
Feeds: 27 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Rachel B
Night Nurse: Lauren

Saturday, November 1, 2014

NICU Day 41

I went to see Baby Girl around 1:30 today, which meant I had time to do 2:30 cares and then hold her.  The doctor looked at her while we were there and suggested that her OG tube should be change to an NG tube now that she's on CPAP.  Rachel B and I decided to go ahead and change the tube out even though the OG was good until Nov 9th.  The thought was that if we change it now the neobar that was stuck to her face would be gone.  It would be easier for her to suck her pacifier and her fingers and there would be less stuff on her face allowing her to be generally more comfortable.

That delayed when I held her until 3 and had her a lot more stimulated by the time I was holding her.  We snuggled for quite some time and I fell into a very restful oxytocin nap.  At about the hour mark, Baby Girl as usual marked the time with a desat.  I was comfortable asleep and suddenly she just stopped breathing.  I startled awake and looked at the monitors just in time to see them begin registering the desat, then the alarms started.  I can still viscerally recall the fear that gripped me as I felt her stop moving and woke up.  I didn't wait to see if the desat self resolved, I rubbed her back until her numbers came back up.

Baby Girl looks so much bigger than the last time we took a picture like this:


Weight: 1380 grams (back up those
30 grams) - 3 lb 1 oz
Milk: 1120 (37.3 oz)
Feeds: 24 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Blood gas tonight
Day Nurse: Rachel B
Night Nurse: Lauren

Friday, October 31, 2014

NICU Day 40

Feeding and growing continue.  Happy Halloween!  Baby Girl's Incubator is a monkey!  Big Brother was the banana :)




Weight: 1350 grams (down 30 grams) - 3 lb
Milk: 1121 (37.3 oz)
Feeds: 24 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Rachel B
Night Nurse: Karla

NICU Day 39

Baby girl is doing well. We continue to weak down the temperature on her isolette. It is now at 28.7 degrees, room temp is about 28 degrees. She also had her CPAP turned down to a peep of 5 at around 3 yesterday afternoon. 

I went into the hospital for visit, we had a great cuddle. There was one scary time at around 30 minutes in where Baby Girl started desatting and low satting. I tried to get someone attention for about 15 minutes. Sitting there while alarms went off and Baby Girl struggled was an incredibly helpless feeling. I tried hitting my help button, shaking the curtain and waving my arm over the back of the chair. Finally someone heard the alarms going off and came in to investigate and turned up her oxygen. I cannot fault our nurse, I could see that the other baby on our monitor was red alarmed the entire time.  Baby girl had to have her oxygen turned up pretty high (for her) while she recovered. I realized she was somewhat on her side rather than fully on her belly and adjusted her to be truly on her tummy and she did better.

Doctor L called with our update and decided to decrease the Peep on Baby Girl's CPAP down to 5.  Also increasing the protein up to 1 ml protein 8/day which is 1 ml per kilogram.

Weight: 1380 grams (up 80 grams) - 3 lb 1 oz
Milk: 1145 (38.16 oz)
Feeds: 24 ml fortified to 24 calories pushed over 30 min, 1 ml protein x 8/day (every feeding)
Iron supplement 1 ml
Tri-Vi-Sol .5 ml twice a day
CPAP 21%-30% oxygen, Peep 5
Day Nurse: Rachel W
Night Nurse: Karla

Wednesday, October 29, 2014

NICU Day 38

Baby Girl continues to do well with CPAP.  She is very comfortable with it and seems to be on lower oxygen now that she is using it.  She cuddled skin to skin with me for about an hour and a half today before she went back into her isolette. We had a heated blanket over her, but she actually got too hot, so we had to leave her uncovered.  She's getting better at regulating her temperature and she's weaning down off of the temperature controls in her isolette.  She continues to be my little rock star :)

She wore clothes for the first time today.  Rachel B put her in an awesome black and hot pink onsie that said Whoose The Cutest.  She looks so big!



Nurse Practitioner Sharon called with our update:

  • CPAP going well
  • Baby Girl Looks great :)
Weight: 1300 grams (up 20 grams) - 2 lb 14 oz
Milk: 1120 (37.3 oz)
Feeds: 24 ml pushed over 30 min, Iron supplement and 1ml, Tri-Vi-Sol, .5 ml protein x 8/day (every feeding)
CPAP!!, 21%-30% oxygen.
Day Nurse: Rachel B
Night Nurse: Karla

NICU Day 37

Baby Girl did very well with the drop down to CPAP.  She is still low on her oxygen usage and she has successfully removed her new nasal prongs numerous times.  She really likes playing with them, they are much more comfortable than the last set.  She also is getting another ml for feeding, so she's up to 24 ml every 3 hours.

I took her some fresh milk over lunch.  Daddy went to visit after work and held her for about an hour.
All in all, a good quiet day.

Weight: 1280 grams (up 20 grams) - 2 lb 12 oz
Milk: 1120 (37.3 oz)
Feeds: 24 ml pushed over 30 min, Iron supplement and 1ml, Tri-Vi-Sol, .4 ml protein x 8/day (every feeding)
CPAP!!, 23%-36% oxygen.
Day Nurse: Michele
Night Nurse: Karla

Monday, October 27, 2014

NICU Day 36


Baby Girl will attempt to go with just CPAP tonight.  Dr. Anderson said that turning down her rate went so well that he'd like to see how she does on CPAP alone.  Rate will be off at midnight, with blood gasses at 2am.  We had a good visit today.  Originally Husband was going to visit, but he had a meeting so I got to see her twice. I also confirmed that I can get to the hospital, drop off fresh milk and get back to work in less than an hour.

Weight: 1260 grams (up 50 grams) - 2 lb 12 oz
Milk: 1090 (36.3 oz)
Feeds: 23 ml pushed over 30 min, Iron supplement and 1ml, Tri-Vi-Sol, .4 ml protein x 8/day (every feeding)
NIPPV at 15 (dropping to just positive pressure at midnight, will check a gas at 2 am), 23%-36% oxygen.
Day Nurse: Michele
Night Nurse: Karol

Sunday, October 26, 2014

NICU Day 35

Baby Girl had another good day.  Dr. Anderson saw her again.  He liked the look of her numbers over the last couple of days so he decided to try and turn her rate down to 15.  I love how he phrased it.  He said he wants to give her "an opportunity to succeed". He further stated that if she doesn't like it, she'll let us know and we can set her rate back.  The two things they'll be watching are the amount of CO2 in the blood gas and the number of alarms she has.

Today was the first day that I've ever had to talk to a charge nurse about our nursing care, for either child.  I'm very much able to tell the difference between personality issues and quality of care issues.  I've had plenty of nurses that I don't enjoy on a personal level, but this is the first nurse where I was actually dissatisfied with the quality of care we were experiencing.

Yesterday, I spoke with her directly about my concerns and explained how important I found it that she vent the OG tube (which means giving the gasses and food in her stomach a way to escape back out of the tube she has in her mouth if they need to).  There were other issues related to speed and clarity of action that made me uncomfortable, but this was one direct example I was able to provide for her.

Today, I spoke with the charge nurse and asked if there was a way to prevent her from being assigned to my daughter in the future.  This hospital doesn't have a way to do that, but they will work very hard to avoid it if possible.  If it cannot be avoided, I'll plan to stay with her all shift to provide backup.  Luckily, she's an agency nurse and she'll be moving on to a new assignment in 3 weeks, so there won't be many more opportunities for her to be assigned to my daughter.

The biggest concern I noticed was an overall lack of attention to detail.  She'd often get lost in what she was trying to get done and fail to complete the task.  She'd have to make several trips when preparing Baby Girl's food, back and forth, getting things she forgot.  I found myself going along after her reviewing settings on the machines to make sure Baby Girl would get the right amount of food and oxygen.  Today, she forgot to vent the OG tube after every feeding I witnessed. She also stopped venting it and checked for residual an hour before she actually got around to feeding Baby Girl.  That meant that out of the 2.5 hours between feedings, she was correctly vented for approximately 45 minutes.  She also failed to keep her correctly contained within the isolette so she'd feel secure and sleep better.  I asked her to fix it and she said she'd forgotten, but that she would.  I should have fixed it myself and I will in the future.

Feedings were generally given late, because of the scattered nature of her care. I'm also not sure she actually did all the cares that she was supposed to accomplish.  I never saw her use the nose gel, though I did see her scan it.  I should have watched more closely to see what she was doing, but I wasn't aware of the extent of the problem at that point.

She also routinely forgot to put the cover back over the isolette, babies at this gestational age do best in dark and quiet.  The goal is to keep her sleeping and calm as much as possible so she can focus on growing.  Several times I had to come along behind her and re-cover the isolette.  The last time was particularly frustrating, because my side as closed and I didn't know she'd left her side open until Baby Girl happened to desat and I looked in to make sure her cannula was in place and saw how light it was.

Later this evening, while thinking back on the care we had today, one other thing that I realized I needed to check on was the process she used to move Baby Girl in and out of her isolette for Kangaroo Care.  She disconnected her vent from her nasal cannula when she moved her.  I questioned the practice but she assured me it was fine and was better than having her nose pulled on by the cords.  No one else in the 5 weeks we've been here has ever disconnected her oxygen and vent when moving her around.

Tonight's nurse is sometimes charge nurse instead of a floor nurse, so I was comfortable talking to her about this situation as she has already been informed about my concerns over the day.  If she'd been a floor nurse, I wouldn't have brought management concerns to her attention, but since she is part of management, I talked to her while I was getting tonight's update instead of the charge nurse.

When I asked our night nurse  if that was common practice or if it was something I should help discourage/educate on in the future to prevent it happening again.  She said that it was not something they would typically do.  She said she can't say that Baby Girl would be harmed, but it would not be something she'd like to see happen routinely.  If the cords were tangled, they would disconnect to untangle them, but generally, not to move her.  I assured her that I watched her numbers on the monitor while it was happening and they looked OK.  I now have more information and will be able to prevent that in the future.

All in all, not a stellar day on the nursing front, but I continue to be impressed with the overall level of care and professionalism at this hospital.  I won't say I'm not happy to know tonight's nurse will be moving on to a new assignment in a few weeks, but she is absolutely an exception to the normal standard of care.

Length: 34.8  (.3) (13.5 inches)
Head Circumference: 25.3 (+.8) (9.9 inches)

Weight: 1210 grams (up 20 grams) - 2 lb 11 oz
Milk: 1210 (40.3 oz) Moved my midnight pump back to 11ish so I can sleep more between 11 and 3am.
Feeds: 23 ml pushed over 30 min, Iron supplement and 1ml, Tri-Vi-Sol, .4 ml protein x 8/day (every feeding)
NIPPV at 20 (dropping to 15 at midnight, will check a gas at 2 am), 23%-36% oxygen.
No labs in the morning
Day Nurse: REDACTED
Night Nurse: Danielle

Saturday, October 25, 2014

NICU Day 34

So, I've learned that preemie's age by gestation until they hit 40 weeks, then they have an adjusted age.  So, right now, Baby Girl is 4 weeks, 5 days old and as of today, 30 weeks gestation.  When Baby Girl reaches 14 weeks, 5 days, she'll be a newborn according to her adjusted age.  At 15 weeks, she'll be 2 days adjusted.  It is a new way of counting, but I'm growing accustomed to it.

Dr. Anderson called today.  Baby Girl had no instances of fast breathing yesterday. If she does that again, he might try weaning the NIPPV tomorrow.  The top priority right now is growing and she's doing a great job!  30 grams today.

Baby Girl had a special treat today and so did her daddy.  For the very first time, Husband did Kangaroo care.  He said he'd try to do it for half an hour.  She's very tiny and quite intimidating.  An hour and a half later, we gently placed her back in her incubator.  Daddy and daughter had a very good visit.




Weight: 1210 grams (up 30 grams) - 2 lb 10 oz
Milk: 1105 (36.83 oz)
Feeds: 23 ml pushed over 30 min, Iron supplement and 1ml, Tri-Vi-Sol, .4 ml protein x 8/day (every feeding)
NIPPV at 20, 23%-36% oxygen.
No labs in the morning
Day Nurse: REDACTED
Night Nurse: Stephanie

Friday, October 24, 2014

NICU Day 33


Dr Anderson saw Baby Girl today.  I really enjoyed speaking with him.  He's a very personable and engaging doctor who provided a lot of really relevant information and really great explanations of the issues.  He said that Baby Girl was tachypneic (breathing fast) 30% of the time, so he decided not to wean the NIPPV. Given the options, putting effort and calories into growing is a better option than into breathing with less support.  Overall, her lungs look good on Xray.  Dr. Anderson said that if he were to look with a microscope, he'd probably find mild damage from the support she is on, but overall, she looks really good from a respiratory standpoint.

Baby Girl is currently gaining about 18 grams a day on average.  He'd really like to see her gain 30 grams a day, so he is upping her feeds to 23ml to try and boost weight gain.

Happily, we get another day off on labs.  Given her last set of results, he thought she wouldn't need new labs for 3-4 days from her last set, which occured a couple of days ago.

Dr. Anderson also explained infant anemia.  Babies are usually anemic about 4-6 weeks after they are.born. they have a lot of red blood cells at birth due to totally normal low levels of oxygen in the womb. Upon birth the systems that create red blood cells take a break because o2 is so prevelant.  Thus the anemia. Transfusions are given to preemies because anemia hits them harder and faster than termies.  because baby is small and we want to direct calories to growing rather than other activities such as making red blood cells

When Dr. Anderson examined Baby Girl, he commented that she sounded good, no murmur (inappropriate heart sounds), no wheezing (inappropriate lung sounds).

Overall, he said, he wanted to be clear that he is NOT worried right now.  He is very happy with Baby Girl's current status and he is content to continue waiting for her to grow (with a little help in the form of a bit more food).

Baby girl high satted the whole time I held her.  They pushed her O2 back down to about 27% and she remained there when I called to check her wait a few hours later.

Weight: 1180 grams (up 80 grams) - 2 lb 9 oz
Milk: 1090 (36.33 oz)
Feeds: 23 ml pushed over 30 min, Iron supplement and 1ml, Tri-Vi-Sol, .4 ml protein x 8/day (every feeding)
NIPPV at 20, 23%-36% oxygen.
No labs in the morning
Day Nurse: Carroll
Night Nurse: Kate & Allie

Thursday, October 23, 2014

NICU Day 32

No changes today.  Blood Gasses look good back on rate of 20 for NIPPV.  Baby Girl still hadn't had a big poop, so she got a wee bit of a suppository, which seems to have things moving again.  I talked to her over the phone at around 5 and she opened her eyes, which made me very happy (I cried a bit).  I bought a voice recorder and I'm trying to figure out what to record.  The Husband worked late tonight and I tried to do everything (but fell asleep on the couch instead).  I am very tired.

Weight: 1100 grams (down 40 grams - totally expected... 2 big poops!) - 2 lb 8oz
Milk: 1055 (35.16 oz)
Feeds: 21 ml pushed over 30 min, Iron supplement and 1ml, Tri-Vi-Sol, .4 ml protein x 8/day (every feeding)
NIPPV at 20, 23%-36% oxygen.
No labs in the morning
Day Nurse: Carroll
Night Nurse: Kate & Allie

Wednesday, October 22, 2014

NICU Day 31

30 days has September, Baby Girl is one month old today.  I miss her so much!  I'm committed to doing my absolute best to keep her healthy.  I currently plan to see her on Friday, however, a couple of coworkers are sick and I spent 4 hours yesterday and today in close proximity to each of them.  I didn't realize they were sick until I had already been around them for a while.  Unfortunately, I realized one of them was sick after they coughed on me and my drink :(  I worry about the incubation period of viruses and how the heck I'm going to make it through an entire winter at this rate.

My plan is to pump fresh milk for Baby Girl on Friday and then, as long as I am still not sick on Saturday, which would be 3 days after my last confirmed exposure (as of today) I will hold her.  This protects her in two ways.  First, if I am sick, by having her receive fresh breast milk for a full day before I hold her, I'm giving her every antibody I'm currently producing, which makes her safer.  Second, the common cold incubates between 12 and 72 hours, which means I'll have exceeded the incubation period and should experience symptoms by Saturday.

Also, I might wear a mask :P

Dr. Murthy called with our update late this afternoon.

  • Baby Girl is back to full feeds after yesterday's blood transfusion.  She continues to tolerate her feeds plus protein, human milk fortifier, Tri-Vi-Sol, and iron supplement.
  • Baby Girl's hematocrit is back up to 40% instead of the 30% it was yesterday thanks to the blood transfusion.  
  • Baby Girl's blood gas wasn't what we'd like to see.  Because her CO2 was up to 60%, they went back up on the NIPPV rate at 20 instead of 15.
  • Baby Girl continues to have A's and B's.  They continue to mostly self resolve.

Weight: 1140 grams (up 10 grams) - 2 lb 8oz
Milk: 1055 (35.16 oz)
Feeds: 20 ml pushed over 30 min, Iron supplement and 1ml Tri-Vi-Sol, .4 ml protein x 8/day (every feeding) - Iron, Protein and Caffeine doses were adjusted for weight today.
NIPPV Remains at 20, 23%-36% oxygen.
A ton of labs in the morning
Day Nurse: Mary
Night Nurse: Kate and Ally

NICU Day 30

Regina, the nurse practitioner called with our update.
  • Baby Girl's nutrition panel looked great
  • Baby Girl's blood gasses were fantastic so they dropped her respiratory rate down to 15 on NIPPV.
  • Baby Girl's hematocrit was 30 so she did have a blood transfusion this morning, therefore she has an IV and her next 3 feeds will be trophic feeds.  She will be receiving TPN during that time.
  • Her feeds have increased to 21 ml every 3 hours at 24 calorie fortification with .4 ml of protein.
  • She only had one self-resolved Brady, which is awesome.  
  • I asked about her length not changing and she said given her weight gain and head circumference changes, they are fine with where things are.  She's in a good place on the growth charts still.  We'll see what next Sunday brings
Weight: 1130 grams (up 90 grams due to fluids from IV, TPN and Blood Transfusion) - 2 lb 4oz
Milk: 1115 (37.16 oz)
Feeds: 20 ml pushed over 30 min, Iron supplement and 1ml Tri-Vi-Sol, .4 ml protein x 8/day (every feeding) - Iron, Protein and Caffeine doses were adjusted for weight today.
NIPPV Remains at 20, 23%-36% oxygen.
A ton of labs in the morning
Day Nurse: Alisha
Night Nurse: Kim