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
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
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

Monday, October 20, 2014

NICU Day 29

Baby Girl had a head ultrasound today and it came back "normal"!  This means we continue to steer clear of bleeding in the brain, which is fantastic.  She continues to maintain on her respiratory situation and her recent weight gains have caused them to increase her protein to .4ml every feeding.  I miss her SO MUCH, but I can't begin to imagine risking giving her a virus just so I can see her.

Weight: 1040 grams (up 20 grams) - 2 lb 4oz
Milk: 1093 (36.43 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: Kim

Sunday, October 19, 2014

NICU Day 28

I'm really done with not being able to go to the hospital.  I feel like I should wait the full 7 days because it is safest.  C keeps coughing on everything and producing rivers of snot.  He sleeps in bed with us because I want to be sure he's breathing OK.  He's handled colds much better since his mitral valve was repaired, but I'm still leery, especially with EV-D68 running around.

I find that I really miss being pregnant.  I had a lot of expectations for how October, November and December would be for me.  I expected a certain level of discomfort, a lot of work to manage my blood sugars and getting big as a house.  I was looking forward to Baby Girl being big enough that I could let C feel her kick.  We were going to do a 3D ultrasound and have a copy of it on DVD.  We were going to have a recording of her heartbeat installed in a bear for C.  I was going to actually get my prenatal pictures done this time.  I miss feeling her kick and the bonding we would have done in these last few months of my pregnancy.  I'm sad I couldn't share her with my husband and son.  Every day, in a thousand ways, I'm reminded that the world has not matched my expectations for this pregnancy.

Sunday Measurements:
Length: 34.5 cm (no gain) - 13.58 inches
Head Circumference: 24.5 cm (+1cm) - 9.64 inches

Weight: 1020 grams (up 40 grams) - 2 lb 4oz
Milk: 983 ml (32.76 oz)
Feeds: 20 ml pushed over 30 min, Iron supplement and 1ml Tri-Vi-Sol, .7 ml protein x 4/day (every other feeding) - Iron and Caffeine doses were adjusted for weight today.
NIPPV Remains at 20, 24%-31% oxygen.
Day Nurse: Mary
Night Nurse: Kim

Saturday, October 18, 2014

NICU Day 27

Baby Girl reached 1000 grams!  So Excited!! She also reached 29 weeks gestation today.

I'm tired of being sick.  I want to go see Baby Girl.  C continues to be full of virus and grossness.  I'm hoping my comparatively minor symptoms resolve soon.  Husband went to the hospital today and dropped off more milk for Baby Girl.  He wore a mask and did take a picture for me.  I very much miss seeing my Baby Girl.

Weight: 1000 grams (up 40 grams) - 2.2 lb *ONE KILOGRAM!!!!!*
Milk: 1045 ml (34.8 oz)
Feeds: 20 ml pushed over 30 min, Iron supplement and 1ml Tri-Vi-Sol, .7 ml protein x 4/day (every other feeding)
NIPPV Remains at 20, 24%-31% oxygen.
Day Nurse: Lindsay
Night Nurse: Lindsey

Friday, October 17, 2014

NICU Day 26

Today has been a quiet day.  I went to work and did work stuff, then came home because I can't risk going to the NICU.  I have a slightly rough throat, minor sinus pressure and stuffed ears.  I can tell I'm sick, but it isn't getting super symptomy at this point.  C is also sick, so at least I know where it came from.

Baby Girl is on a giant poop at 5 o'clock schedule. Apparently she filled 2 diapers at 5 o'clock this morning and had another giant poop at 5 this evening.  I may have to ask some more questions on this, as I'm expecting her to poop 5-6 times a day.. but everyone seems happy with her input/output, so I guess we're good to go.

No weight gain tonight, maybe it was all the pooping... Hopefully the added protein will kick in soon.

Dr. Caldwell called with our update.
  • Tolerating Protein, has had 2 rounds of it, gained 30 grams yesterday before the protein started.
  • CO2 57 on rate of 20, waiting a few days and will either decrease rate or shift to CPAP
  • 8 Brady alarms, 2 required stim, one before rate change and one after
Weight: 960 grams (no change) - 2.2 lb
Milk: 1023 ml (34.1 oz)
Feeds: 18 ml pushed over 30 min, Iron supplement and 1ml Tri-Vi-Sol, .7 ml protein x 4/day (every other feeding)
NIPPV Remains at 20, 24% oxygen.
Day Nurse: Trisha
Night Nurse: Lindsey

Thursday, October 16, 2014

NICU Day 25

Dr Florendo called with our update, bright and early this morning.  And then her nurse called in early afternoon to say we were going to move rooms.  And then Dr. Caldwell called around 7 and said we were going to start protein tonight.  That was a lot of NICU calls for a day, all good things, but my heart skipped a beat with every unexpected call.  In the end, we stayed in our old room, so that's good to know.

I didn't go visit Baby Girl tonight.  C is sick, again... so now I'm waiting to see if I catch it to.  My throat felt a little scratchy today, so I decided to hold off on visiting.  If I do visit, I'll be wearing a mask until I can figure out whether or not I'm going to catch this bug.  This is the 5th cold C has had since I first found out I was pregnant back in April.  We get sick a lot... C is pretty restless and having trouble sleeping tonight.  My poor boy.
  • Change rate to 20 at midnight, then checking a blood gas at 2 am
  • The dietitian was out yesterday so they will try to discuss the Liquid Protein today.  Her BUN indicates she's getting enough protein now, so they may wait to start it, but the 10 gram weight loss may require something different.  I let her know about the giant poop, in case it makes a difference. Dr Caldwell called at around 7 this evening to tell us she finally got the recommendation from the dietician.  We are going to start with 1/2 gram per kilo of liquid protein.  That will be .7ml every other feeding.
  • 9 alarms overnight, only one required stimulation to come out of it, pretty standard for her.
Weight: 960 grams (up 30 g) - 2.2 lb
Milk: 1055 ml (35.16 oz)
Feeds: 18 ml pushed over 30 min, Iron supplement and 1ml Tri-Vi-Sol, .7 ml protein x 4/day (every other feeding)
NIPPV Remains at 25, 26-32% oxygen.
Day Nurse: Trisha
Night Nurse: Lindsey

Wednesday, October 15, 2014

NICU Day 24

Another day of feeding and growing.  I didn't hold Baby Girl tonight, I had an opportunity to take an earlier appointment with my therapist tonight, so I did that and then went by the hospital to pump some fresh breast milk for Baby Girl.  I met her nurse Diane who has an adult daughter who was born with a pretty severe heart defect.  We talked a bit about whose who in the cardiac world and which hospitals were great for which surgeries these days.  it was a lot of fun.  I found out Baby Girl's neighbor has some cardiac issues as well.  His mom and I talked about all the what-ifs we have to let go of.  It is hard not to second guess all the steps that lead to where we are now.

Our neighbor had a pneumothorax when he was born which is why he was on the oscillating ventilator and all that high tech stuff.  He also has SVT, which is pretty scary for his mommy.  His mommy told me she was VERY impressed with Baby Girl's cry.  She's loud for such a tiny thing and she makes it very clear how she feels about the world.  She'd really like to sleep on her belly and not be messed with.  I hope she's getting used to the routine though.  I talked with Brittany and she said that Baby Girl continued to bounce up and down on her sats, so she did care a bit early and flipped her back on her belly.  They talked some more about adding liquid protein to her feeds during rounds, but no decisions have been made yet.

Baby Girl had an ENORMOUS poop right before she was weighed.  Brittany said it was the biggest poop she'd seen in a baby this size in a very long time. This epic blow out may explain why she was down 10g.  It may also explain some of the apnea and brady spells she was having (apparently these are called A's and B's in the vernacular of the NICU).

Weight: 930 grams (down 10 g) - 2 lb
Milk: 997 ml (33.23 oz)
Feeds: 18 ml pushed over 30 min, Iron supplement and 1ml Tri-Vi-Sol
NIPPV Remains at 25, 26-32% oxygen.
Day Nurse: Diane
Night Nurse: Brittany

Tuesday, October 14, 2014

NICU Day 23

Due to a power outage at the office, I ended up getting to see Baby Girl early today.  I had to drive over to the hospital to pump.  I didn't have time to fit in Kangaroo Care, but it was nice to see her.  Amie gave Baby Girl a bath this evening and new bedding.  She cried during the bath, but Amie bribed her with a warm blanket afterwards and that made her happier again.

Dr. Caldwell Called with our update: 
  • Alkaline phosphatase was high which can indicate issues with bbone growth, talking to the dietician to see if we should add protein.
  • Creatinine and BUN numbers are down and within normal range, so if we need to do Protein, it won't be as risky
  • NIPPV same, carbon dioxide is good on the blood gas so we are leaving the vent settings the same.
  • Confirmed 20 gram weight gain, which is 2 grams over our daily goal of 18 grams.
Weight: 940 grams (up 20 g) - 2.1 lb
Milk: 1010 ml (33.66 oz)
Feeds: 18 ml pushed over 30 min
NIPPV Remains at 25, 26-32% oxygen.  
Day Nurse: Lori
Night Nurse: Amie

Monday, October 13, 2014

NICU Day 22

Baby Girl had Lori for her nurse again today.  Another day, another fabulous Halloween out fit from Ms. Lori :) Lori again worked to get me beyond my comfort zone.  She had me pick Baby Girl Up and set her on her back to do her diaper change.  It is the first time I lifted her on my own.  She did help me by getting her out and setting her on my chest, but when it came time to put her back, it was once again up to me.  I carefully stood up, terrified I'd fall and either drop her or pull on her with the vent tube or something.  But I was able to very carefully get her back into her space in the incubator and get her tucked in.  I did have to pick her up and put her on her stomach, again, all very scary.  She's so tiny, but she's also deceptively strong.  I tucked her in myself and we wrapped her in her little bed with a froggie on top and bottom.  So she'd feel safe and secure, just like when she was inside me.

I checked in with Amie around 10pm, like I generally do and she shared that Baby Girl gained 20 grams.  This officially puts her over the 2lb mark at 920 grams.  When she breaks into the kilogram zone, we'll dance another dance of joy.  The hospital is really into metric and finds 1000 grams to be a milestone.  Amy also said Baby Girl had 2 Brady's in the 8 o'clock hour and 2 more in the 9 o'clock hour.  3 of them self resolved, but on one she had to provide stimulation.  Brady's are very scary and I'm very ready for her to outgrow them.

Dr Caldwell called with our update this morning.

  • Baby Girl had a day off from labs, so no new information leads to no real treatment changes.  
  • Baby Girl continues to have clusters of alarms
  • Feeds remain the same
  • Tomorrow (10/14) they will get a bunch of bloodwork, including a nutrition panel to see if she can start tolerating protein yet.  For now, they give her a double dose of Tri-Vi-Sol and some Iron to try and help her weight gain.
Weight: 920 grams (up 20 g) - 2 lb
Milk: 982 ml (32.7 oz)
Feeds: 18 ml pushed over 30 min
NIPPV remains at 25, 26-32% oxygen.  
Day Nurse: Lori
Night Nurse: Amie

Sunday, October 12, 2014

NICU Day 21

Had another "relaxing" afternoon at the NICU with Baby Girl.  I did get to cuddle with Baby Girl for about an hour before she started desatting and generally indicating she was done with holding time. She had a series of spells after her 5 o'clock feeding.  She also was pushing up out of her bed with her legs.  I don't know if we shifted back to the 30 minute feeds too quickly or what. I asked Ashley to keep a close eye on her.  Ashley said she handled this last feeding well and was happy as long as she was on her tummy.  Generally speaking, she seems to only tolerate her sides and back for an hour or so before she starts desatting until she gets put back on her tummy.

Weight: 900 grams (up 10 g) - 1 lb 15.68 oz
Length 34.5 cm (13.5 inches) .5 cm gain
Head Circumference: 23.5 cm (9.25 inches) .5 cm gain
Milk: 937 ml (31.23 oz)
Feeds: 18 ml pushed over 30 min
Having a few more Brady's and alarms
NIPPV down to 25, 32% oxygen.  Blood gas looked great on the rate of 25
Day Nurse: Terry & My
Night Nurse: Ashley

Saturday, October 11, 2014

NICU Day 20

The Husband and I went to see Baby Girl together today.  He got to take her temperature and she held his hand (finger).  It was the first time he'd touched her.  He wore a mask, because he's still got sinus pressure.  We need to figure out why he has so many sinus infections.  I held Baby Girl for an hour, Husband needs to get a book or something before he does Kangaroo Care.   He's pretty sure he'd go crazy if he just sat there with her.  Baby Girl allows Kangaroo Care for about an hour to an hour and 10 minutes, then she goes from high satting on low levels of oxygen to desatting or bradying.  I am told this is all age appropriate behavior, it continues to disconcert me.

I continue to have issues with getting up every few hours to pump.  I end up sleeping at least one 2.5-3 hour block every night despite my best intentions.  We'll see what Baby Girl thinks of that when she gets home.  I suspect she'll put a stop to it for sure.

Dr. Dang saw Baby Girl today before she left, so a nurse practitioner gave us her update:
  • They are beginning to wean Baby Girl on the NIPPV, her rate will be decreased to 25 at 8pm today.  
  • Baby Girl is up to 18 ml for feeds.  She is currently receiving those feeds over 2 hours, but Dr. Dang isn't seeing a significant change in the number of alarms.  She wants one more day of data, but if she's not seeing an improvement in the pattern, they will ramp her back up to feeds over 30 minutes instead of over 2 hours.
  • I reiterated that I wished we had fortifier and protein made from human milk sources instead of cow milk sources. I also reiterated that even with last night's 10g weight gain I thought we might want to wait a bit more and recheck her BUN and Creatinine before we move forward with additional protein.  I asked if skimming the fat off of breast milk could work as an alternative, but they really need the higher protein diet in these tiny preemies.
890 grams (up 30 g) - 1 lb 15 oz
Milk: 871 ml (29.03 oz)
Feeds: 18 ml pushed over 2 hours
NIPPV down to 25, 29% oxygen.  Will check blood gas at 2am
Day Nurse: Terry & My
Night Nurse: Ashley

Friday, October 10, 2014

NICU Day 19

Another day in the NICU.  I left work early at 2 to meet with someone who helps fill out Medicaid paperwork.  She ended up leaving the paperwork with me and then didn't come back before her shift ended, so I brought it home.  I hope to get it to her next week sometime.

I got to hold Riley again tonight and I got a picture of her with her eyes open :)  As always she satted very high while I held her until right at the end, just after an hour was up when she started low satting instead.  I think it is her way of saying she's done for now...

It is very sweet and beautiful to hold her, but she kind of reminds me of a baby squirrel.  They asked if I wanted to get her out of the incubator myself and I declined.  I'd rather they get her, all her tubes and wires out and bring her to me, rather than having me try to get her out myself.

In fun news, I took her temp and changed her diaper.  The diaper change was a bit of a saga.  It took 3 diapers to get her in one clean diaper.  She pooped on my hands twice.  I was talking to another preemie mom the other day and she mentioned how strange it was that the baby didn't even have a butt crack yet... I hadn't noticed before, but that is totally true... there isn't one. The better to poop on me, I guess...

860 grams (up 10 g) - 1 lb 14 oz
Milk: 909 ml (30.3 oz)
Day Nurse: Jennifer
Night Nurse: Ashley

Thursday, October 9, 2014

NICU Day 18

I decided not to visit tonight in the hopes that I could get a little more rest.  I think I may get as much as an extra hour of sleep out of this, which is awesome.  I really love the idea of giving Baby Girl's feed over the course of 2 hours instead of 30 minutes.  I am very hopeful that it will help with her spells.  After about 12 hours (which is 4 feeds) the nurses feel that she is handling it better.  As an added bonus, when they weighed her this evening, she'd gained 30 grams, which is one whole ounce!

Dr Caldwell called with our update
  • One of the nurses noted that Baby Girl's alarms occur the hour before and after she eats.  AAs an experiment, they are going to try infusing the feeds over 2 hours to see of it lowers alarms.  The alarms are why we are on NIPPV, so decreasing or eliminating those would be fantastic and help us move back towards CPAP.  They will go back to 30 minute feeds later when she's bigger if this helps with alarms.  This experiment will last at least a few days.
  • I asked again about adding protein into her feeds.  I said that I gained weight slow as did my son, we both had other reasons (cardiac defects) but maybe part of it was genetic.  She said given that Baby Girl's labs that tell us how she's handling protein are both high normal (BUN and Creatinine), they think they will hold off on the protien. Some babies pick up their weight gain after they hit a kilogram (2.2 lbs) and then pick up even more as they grow, we're hoping she'll fall in that category.  She's currently gaining 10 grams or so, ideally, they'd like to see 18 grams. 
850 grams (up 30 g) - 1 lb 14 oz
Milk: 868 ml (29.8 oz)
Day Nurse: Lori (Still loving the Halloween scrubs, bummed I didn't get to show her my Halloween socks!)
Night Nurse: Ashley

Wednesday, October 8, 2014

NICU Day 17

Today was a pretty good day all around.  I did hold Baby Girl, without a mask.  Things remain mostly stable overall.  She only gained 10 grams tonight, so I suspect they'll be adding protein into her feeds.  They said they'll go really slow adding it in.  They'd like her to gain about 30 grams a day ideally.

Dr Dang called with our morning update:
  • Caffiene has been increased to account for weight gain
  • XRay looked good
  • Stable on her NIPPV, with Oxygen needs in the 20s
  • Blood Gas looked OK, will do another tomorrow morning
  • Since we only gained 10 g, we'll go up to 17ml on food and if that doesn't increase weight gain, we're going to talk to nutrition about adding extra protein.  The protein is cow milk protein.
820 grams (up 10 g) - 1 lb 13 oz
Milk: 868 ml (28.93 oz)
Day Nurse: Lori & Kate
Night Nurse: Doreen

Tuesday, October 7, 2014

NICU Day 16

Today was another quiet day for Baby Girl.  She continues to have apnea spells (forgets to breathe) and Brady spells (her heartbeat slows dramatically).  We're still focused on eating and growing.  The hospital social worker called me today and expressed concern with my preoccupation with not infecting Baby Girl with anything.  They have a strong desire to see me stop wearing the mask, so I did.  Admittedly, it is far more physically comfortable.  It still seems like quite the risk. She is so very small.. but Lori pointed out that we don't want her to think mommy is a blue expressionless mask... Lori says tomorrow I'm doing Kangaroo care without the mask.  If Lori says it... I tend toward doing it, she's just that kind of nurse.  She's been here for more than 31 years and she's pretty dang savvy.

Dr  Dang called with the update at around 4:00
  • Blood gas was a little off, so NIPPV support was increased slightly
  • Oxygen needs still tending to range in the 20s
  • Xray tomorrow
  • Adding a multivitamin for morning and night and an Iron supplement
  • Will talk to nutrition about adding protein to aid in weight gain the goal is actually between 10 and 30 grams and they'd really like to see 30.
I'm very interested in a new blood analysis technology from Theranos.  I wish they had it in the NICU setting, it seems like it could help decrease how much blood they need for labs.  

810 grams (up 10 g) - 1 lb 13 oz
Milk: 810 ml (27 oz)
Day Nurse: Lori
Night Nurse: Jena 

Monday, October 6, 2014

NICU Day 15

Baby Girl did get a blood transfusion today.  While she was getting that, her feeds went down to 2ml every 3 hours.  They went back up this evening and are at 15 ml fortified to 24 cal.  I got to hold her for about an hour tonight.  Her O2 needs went way down early on, but then, right before we put her back she had a desat spell which required stim to get her to come back out.  She did it again right before I left.  I just got off the phone with Jena and she's been having a good night since that time.  The spells are very scary.

Rachel, Baby Girl's day nurse was very helpful in giving me perspective on the germs. I found her perspective very helpful, though I am still wearing a mask.  I didn't use quite as much hand sanitizer as I had on previous visits, or at least, I angsted about it less while I did use hand sanitizer.

For those with very dry hands, I'm finding that using stretch mark cream with coconut oil and putting my hands in cotton gloves after each of my night pumps has helped my dry skin significantly.

Baby Girl is using more oxygen than she did the first week and a half or so.  Generally she seems to be between 25% and 35% when I call.  They told us this was a probability.  Generally after the first few days to a week, these babies get a bit more tired and need a bit more support.

Our family had a bit of a sad note this morning.  My dog, Darby, crossed the rainbow bridge this morning after 16 years on this planet.  Our vet said "This is the oldest cushingoid dog I've every seen."  We'd worked very hard to provide her the best quality of life we could for as long as we could.  We'll miss her, but she was very ready to go.

Dr. Caldwell called with our update at around 8:30 this morning:

  • Baby Girl's blood levels are low enough that she'll need a transfusion.  They will be decreasing her feed quantity while they give her the transfusion.  Then they'll ramp back up once she is done with that.  The transfusion should help weight gain as it will provide more red blood cells to oxygenate her system
  • Baby Girl had 2 Brady alarms in the last 24 hours, both of them required stim to recover.  We'd like to see her need for stimulation to come out of her  Brady incidents to go away.
  • Baby Girl stayed about the same on the NIPPV.  Her blood gasses looked good
800 grams (up 20 g) - 1 lb 12 oz
Milk: 810 ml (27 oz)
Day Nurse: Rachel - A different Rachel than the other two Rachels
Night Nurse: Jena 

Sunday, October 5, 2014

NICU Day 14

Dr Caldwell called around 10 am.  They're planning to be at 14 ml of breastmilk fortified to 24 cal by end of day today (First feeding was at 6, so far so good).  If well tolerated, PICC line will be removed sometime tonight or tomorrow.  Iron supplement will be added if feeds continue to be tolerated, which may avoid blood transfusions, but will take a couple of weeks to take effect.  She had 5 alarms yesterday, only one required stim to recover.  Which means the NIPPV is working to keep her breathing without having to be messed with.  They will be checking labs tomorrow.

I still have junky sinus drainage and I don't know what that means in terms of visiting.  I will be checking on that tomorrow, because this is torture.  Hopefully I can at least go by, see her and get some fresh milk for her.

Pump Total: 767ml / 25.5 oz
Weight: 780g - 20g gain (YAY!)
Length: Sunday is measurement day, she's 34 cm (13.38 inches)
NIPPV Settings about the same, in the 30's on oxygen right now
Day Nurse: Rachel - The Amazing and Awesome -- Bummed I didn't get to see her!
Night Nurse: Erin... who I haven't met yet, but seems very nice :)

The Husband's View on the Birth Story

I asked my husband to write up his view on what happened for Baby Girl's birth.  It is an amusing and pragmatic as he is...


We were just settling down for bed at 11:15 and I was looking forward to finishing an episode of Dr. Who we had not yet had the chance to finish.  Christine had been complaining of contractions and becoming increasingly anxious, while we were both trying to pretend that it was not happening.  Once she started having trouble breathing due to the pain, I knew the rest of the evening was going to suck… worse for her obviously, but some for me too.

This of course meant packing C up while he was sleeping and frantically grabbing snacks, water, and diapers in a mad rush out the door.  C was very cranky and absolutely did not want to go anywhere.  Nonetheless, he was packed up into the car.

I then drive Christine to the hospital.  She wants to go fast, but not too fast.  She wants to keep going and stay in one lane, but she wants to go fast.  She wants to go fast but does not want any bumps.  At least none of us got what we wanted.  We arrive and I let Christine off while I go park outside of the Women’s Center and get C and whatever we managed to pack, which was not much.

Christine is taken to an examination room and I attempt to hold C while he tries to go back to sleep, but the waiting room is too bright and too loud.  While I wait to be called back in to the room with Christine, I attempt the futile task of getting to get C to sleep.  I try laying him down on a chair.  He gets up and jumps off of the chair.  I lay him down on a couch, which is too short for me to lay down… he jumps off the couch.  I finally settle on a chair in front of the TV and that seems to work until I start to doze and C jumps off.  I then figure out I can turn the TV’s off and try the same thing again.  And just when I think he may settle down another couple comes in.  I hope they see me trying to sleep and don’t blithely turn the TV’s on again… they do not but, then start talking and C jumps off the chair and starts running around.


Finally after an eternity we are called back to the room to hear the diagnosis.  The first think I notice is that the room is freezing… and there I am in shorts and a T-shirt.  I get some blankets and continue freezing.  The nurse says a lot of stuff, but it all translates into… Christine is going to have a baby.  I presume it is going to be a terrible night… mostly for everyone else, but for me too.  We determine that we need our parents to get C.  Thankfully they show up quickly and we ship C off to their house for the night.  I settle down for a fitful and frigid slumber while Christine gets probed.  It is really cold.

We are summoned to the delivery room for, well, having a baby.  I remember it being blessedly warm.  At least I was comfortable finally, in my paper pants and paper hat which kept the heat in.  Christine rambles incoherently the entire time and eventually they pull a bloody squealing baby out… that is very tiny and then proceed to put more tubs and wires into her than she weights.  The doctor is worried about having to scrape her placenta out and give her a spinal to give her some drugs.  Before they even get to that point, the thing comes squishing out in a pool of blood and somehow this provides some relief.  There is blood everywhere and it is being mopped up with paper, and plastic things, and some one finally decides to use a towel.  At least it was warm.

At some point it becomes 6 AM and Christine’s mom shows up and I get to get breakfast.  It was somewhat mediocre, but I am very hungry and the coffee is very good.  It barely does anything to improve my wakefulness.  We discuss what needs to be retrieved from the house and who is going to get it.  I realize I am too tired to drive and we get Lolah to come and drive me to our house to forage for stuff.  Because I need to get about 200 things this trip inevitably takes about 4 hours and I get back maybe at 2PM and then take a nap until about 3:30 PM.

C is still with the parents and we arrange for them to drop C up at the hospital on his way to making an errand of some sort.  Vic arrives at about 4:45 and drops C off.  Fortified with an hour nap and some energy drink, I pack a very confused C up, and say goodbye to Christine.  C does not want to leave his Mommy, but I try and explain that the baby is no longer in Momma’s tummy and that it is his sister.  I tell him Momma needs to stay at the hospital to look after the baby, but he does not care.

I am excited to be home and away from everyone.  I give C a bath, feed him something terrible, but that has calories and get him ready for bed.  He wants to know where Mommy is and I tell him he will see her soon.  Once C is in bed I set there for an hour in a stupor and finally crawl into bed.


I wake up and begin the inevitable search for more supplies that Christine needs… inevitably doubling the amount of stuff she has each day I fetch stuff from the house to the hospital.   I think I finally get there around 12 PM, just about the time her mother gets there.

Do not remember this day at all.

Leave hospital at 5 PM, pick C up, have a fairly normal night.  Relax for a bit and go to bed.


Manage to get there at around 10 AM that day.  We learn Christine is going to be discharged, it is very exciting and somewhat weird because we are not going to be staying with Baby Girl.  It is almost a blessing that Christine cannot stay, because I suspect she would make herself crazy… not that being away would make her less crazy apparently.  Christine is very sorry to leave and I start feeling I have a sinus infection… yea.

Before we leave, we go see Baby Girl one more time… it is very sad… poor baby.  I refuse to have to return the baggage cart, so I load everything up on top of two rolling suitcases and we are on our way.

When we get home I try and process the luggage so it does not sit around for a month, but inevitably I leave a bucket of unprocessed stuff which is still going to be there a week later.


Christine had begged me the night before to stay a half day, but I manage to leave anyways.  I feel very irritable that day, very fatalistic.  It is weird being congratulated when I am making the assumption that everything is going to go to crap.  My boss, Lisa Zimmerman says that she is still going to congratulate me every day anyways.  Some lady cuts in front of me to get something in the lunch line while I am talking…  She apologies but I respond that it was fine… it’s not like words were coming out of my mouth anyways and she does… hrm.  Have more sinus pressure, probably have a sinus infection since I can detect it in my teeth.

Since it is official that I and C are sick, Christine quarantines herself in the Living Room, preparing to live there until C and I are well.  I suspect that it will be somewhat futile to have this level of isolation, but I go along with it because the alternatives are worse and it is just easier.  C is sad to be separated from his Mommy and promises that he is not sick anymore.  Mommy wants to hug C, but cannot.


I wake up to severe sinus pressure and determine that I need to go to the doctor.  Christine makes me explain that I cannot be in the waiting room.  One nurse thinks that I have some kind of contagion until I explain it to her.  I have to re-explain the scenario several times, which becomes increasingly frustrating.  Go get medicine at CVS and get to work at 10:30.  Have a productive day at work.  Everyone is very considerate and ask to see pictures of the baby, which I provide one on my phone for them to see. Go home and exercise.

I've already been to Holland...

There's a poem that circulates in most of the "special needs" circles.  It is called "Welcome to Holland".  I found it somewhat comforting when I was carrying Charlie.  It was recently posted to one of the preemie support groups I joined and all I could think was I've already been there, why did I have to go again?


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved 
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... 
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. 
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. 
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
There's a certain sense of unfairness this time around.  Underneath it all, I acknowledge that for my pregnancy, in all probability, this is the best outcome possible.  But still, there is the niggling question, what could I have done differently?  What should I have done differently?  Should I have pushed back harder on Friday and Saturday? Spent less time in denial on Sunday?  Could I have convinced someone to give me steroids and magnesium earlier?  Would it have helped or hurt if I did?  So many questions... and someone posted "Welcome to Holland".

My first thought was for how unfair it is that I'm on a return trip to Holland, I really wanted to go to Italy.  I think it might have been fun.  So very different than my previous experience, somewhat simple and carefree.

I know I have to accept where I am now.  It kind of sucks and it is pretty scary, but here we are.  In the end, I may never get to Italy, but I suppose Holland has its own charm.

Saturday, October 4, 2014

NICU Day 13

Baby Girl continues to hold steady.  She really does not like being messed with. In her perfect world we'd leave her alone and let her sleep... which is what makes sense developmentally, but since she's out, it just isn't practical.  Whenever they mess with her, she tends to desat just so everyone is clear she's not at all OK with the poking, prodding and measuring that is occurring.

I dropped by to get more milk bottles at the hospital, but they were totally out. I asked why they didn't want me using bags and they said that if we wanted to use them we could.  Since milk stores so much better in bags, we decided to shift to using those instead of their bottles.  Unless I dig through my bottle stash and find something a lot more accurate, my total ounces will become much more approximate, which is concerning when I'm trying to track my production...

Pump Total: 724ml / 24.1 oz
760g - No weight gain this evening
NIPPV Settings about the same, still ranging in the 20's on Oxygen.
Day Nurse: Kim
Night Nurse: Kim

Friday, October 3, 2014

NICU Day 12

I spent most of the day trying to rest and fight off this cold.  Our dog, Darby, may be having seizures, I cooked some rice and bone broth for her since she didn't seem to want to eat this morning.  It is very concerning.

Baby Girl continues to sleep a lot, which is the best thing she can do for her development.  I asked what the target weight gain was for her currently and they told me 10 grams a day.  She met that goal again today with a gain of exactly 10 grams.

During rounds this morning they discussed the number of alarms Baby Girl has had that require "stim" (external stimulation such as rubbing her back) to recover from.  Alarms occur when Baby Girl starts breathing really shallowly, stops breathing entirely and/or has bradycardia (slow heart rate).  Given that the number of times someone has to interact with her to get her back on track had increased, they decided to switch her back to NIPPV (Non Invasive Positive Pressure Ventilation).  While this is a step back in terms of respiratory support, it is ultimately better for her as she gets better oxygenation and has people messing with her less.  Baby Girl continues to need oxygen support ranging from room air to in the mid to high 20's.

She held steady at 22 calories of fortified breast milk today, but the volume has been increased to 11 ml.  They will now begin bumping the volume of the feed up to our eventual goal of 14 ml, followed by increasing the fortification some more to get to a higher calorie load with more nutrients to help support Baby Girl's developing body.

Dr. Caldwell called today:

  • stay at 22 cal today, volume will increase to 11 ml tomorrow morning, will be adding volume for the next day or so, then increasing calories again.
  • goal is 10 grams per day
  • Back to NIPPV, O2 on 24%, fewer desats
  • 760 g (+10g)
Night Nurse: Kim (This also may have been the name of the day nurse... very confusing)

Thursday, October 2, 2014

NICU Day 11

I started feeling like there was some gunk in my throat this morning on the way to work.  I clearly remember thinking "I didn't cry enough for this feeling".  By this afternoon I noticed I was clearing my throat fairly regularly and I have even coughed 3 times.  I called the hospital and said I won't be in for fear of being sick.  Now I'm trying to decide if I should allow myself to move back upstairs and be with my family again.  Charlie did sit on my lap a while this evening.  We looked at pictures of Riley and Charlie talked about how she was spending time with the doctors.  It was a peaceful evening.

In the battle with viruses, we added some signage for the doors.  The front door now asks people to not visit if they have been sick and to wash their hands frequently while here.  The garage door (where we usually enter and exit) reminds us to change everyone's clothes when we arrive home and to wash up as soon as we get here.

Also, Rhonda told me that her right eye opened and she looked at her with both eyes today :)

Dr. Carr called with her update around noon today:
  • 8 alarms about half of which required intervention
  • Blood gasses had CO2 a little higher than normal
  • Up to CPAP 6 to see if that helps with the aforementioned alarms and blood gas levels
  • Phototherapy is OFF Bilirubin was down to 1 from 3.9
  • Triglycerides were high, so fat has been removed from TPN
  • Up to 10ml on feeds, will fortify to 22 cal starting tonight
Height: 13 inches (33 cm) - New measurement on Sunday
Weight: 1lb 10oz ( + 10 grams)
Pump Total: 633ml - 21.1 oz
Day Nurse: Rhonda!! LOVE HER!!
Night Nurse: Kim

NICU Day 10

I went to see Baby Girl tonight and she was sleeping very peacefully so I pumped to make her more fresh milk for tomorrow and watched her sleep a bit before I left.  I feel a bit more emotionally stable this week, I'm hoping that trend continues.  Between work, hospital, home and pumping, I'm a bit exhausted.  I'm going to have to figure out how to find balance, somehow...

This was supposed to be posted at 3am when I woke up for my next pump, but I overslept :(  I'll try to add in several extra pumps over the course of the day to make up for it.

Height: 13 inches (33 cm)
Weight: 1lb 10oz ( + 20grams)
Pump Total: 633ml - 21.1 oz
feedings bumped to 10 ml, tpn down to 2ml/hr
CPAP 5 - 21% - 27%
Dr Carr called with an update
Phototherapy is on
Day Nurse: Rhonda
Night Nurse: Megan
Rhonda and Megan have been awesome!  Rachel B stopped by to check in as did Cassie... everyone is amazing.  Lori will be back on Saturday with more awesome Halloween wear :)