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.

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.

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.

 

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?!

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!

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.

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

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

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

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)

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

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

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!

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