Thursday, March 31, 2016

NICU Journey Week 7 - Her First Bottle, Easter and Visits!!

Anastasia's growth this week: 
Weight: 1459 Grams!! (Was 1315 Grams)
Length: 41 Centimeters  
(Was 39 Centimeters)
Age: weeks old 
(Should be 34 weeks gestation)

Good Friday
Today was a down day. The cameras have been turned off until the new system is put in, (which is months or years away). For the last 7 weeks I have watched Anastasia grow up on the webcam. I've logged in at least 2-3 times to watch her cares. I've called and had the nurses move her blanket so I can see her sleeping. I'd just stare at the screen and watch those little sleep smiles, making sure she's nicely nested. I've watched her get baths, her little daily routine is what my routine centered around.

Now I feel lost. I feel disconnected from her. My updates from the nurses are just "She's doing good." When I watched on camera, I could tell when they changed her hair bows out, watch them play with her curly black hair. Those little things are not passed during reports. Now, I don't get to hear about it. Don't get me wrong, I am thrilled she is doing extremely well. But I love knowing those little details, as well. 

We did put her crib together, sheets and all today. I keep staring at the crib that's all ready for her to be put to bed in. It reminds me she'll be home someday soon. I just pray it's before her due date. I'm hoping she'll come home at 36 weeks. That's the hope anyways. At least I get to see her tomorrow, finally. 

After 10 days of missing her I finally got to see Anastasia! I cannot tell you how hard it is to be apart from your sick little baby girl for over a week. I was fever free but I still had a cough, therefore, I wore a mask to err on the side of caution. She really could do without a cough in my opinion. 
Anastasia got to meet her Aunt Sarah today. Sarah got to hold her and talk to her, play with her little curly head of hair. Sarah made a cute blanket that can double as an isolette cover until she's released from the hospital. It's super cute. Then Sarah watched Rory while we had our meeting. 
 After 30 days in the hospital the care team likes to hold a meeting with the parents to update them on their child(ren). It's pretty much an in depth rounds meeting. Our meeting was around day 47. (Close enough). Despite all the challenges she's faced, Anastasia is doing surprisingly well. The discussion was basically, "Had issues with eyes, resolved. Had issues with her first brain scan, has since resolved. Had issues with oxygen, currently on room air. Had issues with feedings, now tolerates feeds."
The new part of the discussion centered around what steps she needs to complete to be discharged. She needs to:
1) Maintain her own body temperature (which she can't currently do.) 
2) Eat all of her food by mouth for 2-3 days (she's never had any food by mouth in her life).
3) Weigh around 4 pounds. (This is the unofficial standard). 

After the meeting Char and Sarah went to go see Anastasia and tell her bye. Char was going to hold her but she looked comfortable and sleeping in her little nest, he couldn't disturb her. Afterwords, Sarah took us to lunch. 

Later; Sarah, Millie, and I went to our churches' meeting for women. It was very inspiring. I don't normally go but everything with Anastasia has made me see little miracles every day. I mean look at our care meeting, nearly all the complications they predicted she's overcome. This tiny preemie in the first 7 weeks of life has overcome more obstacles then some people may face in their whole life. Yet, here she is by the grace of God. 
It was also fun to spend time with Sarah and Millie while the kiddos got to spend time with Grandma. It was like a girls night out. 

Easter Sunday

Rory didn't know it was Easter Sunday, nor that the egg hunt wasn't until the afternoon but he got up at like 5:30 am. Heidi Anne woke me up rather abruptly to let me know he was up. I made a bottle and tried to leave the room. However, every time I got close to the door he would start to cry. Which is sweet except for that early in the morning. Later my mother in law offered to watch him so I could go back and sleep -- I tried but I was up for the day. Boo.
I did get to see all 3 of my babies today, twice in a row which is a rarity. I look forward to where everyday I have all 3 children home with me. Anyways, after Rory went down for his morning nap I headed to the hospital to visit Anastasia. I got all the way to the interstate before I realized I had the Rory's car-seat, which my in laws needed. (I blame the early morning wake up call). 
When I got to the hospital (once again I put on a mask to be safe) I just sat and watched her sleep for a little bit. I miss watching her sleep. Today she had her first bottle ever! She eat a whole 8 milliliters (about 1.5 teaspoons), which is great for her first time. She ate like a champ. It was amazing to be able to feed her for the first time. Getting to do more then just watch or hold her, but actually nurture her. Like I'm helping her to grow up. Not just standing on the sidelines but participating in her growing up. 

They'll try once or twice a shift from now on to get her to eat. It depends entirely on her cues. Which are; rooting, sucking on her binki, sucking on her hand, being awake and alert. We're praying she gets the hang of this bottle thing. It's one of the things she needs to accomplish to come home.

I went back to my in laws house where everyone (minus Char and Uncle Zack) gathered for an Easter Egg Hunt and Easter dinner. I think the kids had a lot of fun with the egg hunt, you could barely contain Heidi Anne, she was so excited. Sadly, I forgot to get some pictures. 

I am exhausted. I drove so much over the weekend and did more actives than we normally do. I was going to visit Anastasia today but the roads are nasty. I hate how the weather impacts my visits. But Rory wants cuddles today and is teething. Maybe it's a good thing I'm home today. I know I've said it before, but this balancing thing is just difficult. I pray every day that no one I know ever has to be torn between children or be far away from their newborn baby. It takes nearly everything out of me emotionally, it's just draining. 
Everyday you second guess if you spent time with the right child that day. Who needed you more and were you there for them? Some days I just cry or feel totally lost I can't do anything. I wish I knew in advance, "Rory is teething on Wednesday and he'll need you more." Or "Anastasia will be super alert on Monday and that would be the best time to spend with her."  But life isn't that way. I just pray, cross my fingers and hope I picked the right baby that day. 

I loved my visit and her nurse today! The nurse did most of her cares before I got there, that way I could spend as much time as possible holding Anastasia. She noticed in the chart we're from Wyoming and knew how special our visits must be. 
Nurse Becky saved one thing for me to do for Anastasia and that was feeding time. Anastasia was showing all the signs that she was willing to take a bottle, she was rooting around and sucking on her binki. Lastly, she was very alert, looking all around and was awake longer then I've ever seen. Nurse Becky said this behavior should become more and more common as the weeks roll on. 
I loved getting to feed her a bottle, she ate 25 mls  (nearly an ounce) in under 15 minutes. It was amazing, that's almost her whole feeding, which is slowly fed via the NG tube over 90 minutes. The nurse was kind enough to a picture of us as I held her in my arms feeding her. (Even though she was swamped she knew this was a big event for me). I know one day I'll be feeding her 8-10 bottles a day (if not more) but right now seeing her, much less feeding her, happens so infrequently. 

It was a perfect visit. After I feed her we cuddled for the longest time. I sang songs to her as she got comfortable on me. I sang until she fell asleep on me. Then I enjoyed our precious time together. While Anastasia slept she held my finger with her whole hand. It's like she's becoming more like a term baby as each day passes. I'm amazed at how fast she is growing up.
For some unknown reason leaving her today was especially hard. I wanted to turn around as soon as the NICU doors closed behind me. I don't know if it's because I got to feed her today or how she held my finger so tightly with her tiny hand that I had to pry them free. Maybe it was because she was just waking up as I was leaving? Perhaps it's that I want to have this type of visit every time. 

The plan was to go visit her but I forgot Char was on call today. Guess what? He got called in. I'm glad I got to see her yesterday. Funny story, I almost didn't go. I had one of the most wonderful visits and it nearly didn't happen. It was all due to weather. I drove in white out conditions going a whole 45 miles in an 80 MPH zone. It took over 90 minutes to get there and just as long back. But it was totally worth it. I might be able to see her tomorrow, plus it should be in better weather! 


I had a lovely visit today. I spent nearly 6 hours with her. I got to feed her a bottle again. This time was much slower, 8 mls in 20 minutes. According to the nurse she just doesn't have enough fat to have plump lips and chubby cheeks to suck efficiently. I'm not sure if I believe that one, but it does make sense. Look at this little face. This was my view for 4 hours. 
We upped her feeding, she'll now get 27 mls (of 28 calories now) in 60 minutes. She didn't react as well as I thought she would. She was fussy for the first time. No matter what position I held her, it was wrong. I felt helpless, I kept asking the nurse for reassurance that I was doing things right. She determined that she might be reacting to the faster feeding, so she slowed it down. Anastasia soon settled down after that. But for those 30 minutes I questioned everything I knew and have learned as a parent. It's hard when your baby is upset, meanwhile there are alarms sounding or beeping, and you second guess yourself. It was just so overwhelming!  
Getting to visit this baby girl isn't easy. It requires planning the day before, it depends on the the weather, and then how Rory is acting the day of the visit. (The fussier he is the shorter the visit tends to be). Then comes the drive. It's an hour in good weather and nearly two in bad. Today it was nighttime that turned into white out conditions on my way down - since I left home at 6:00am. The way back was filled with rain, sleet, snow, hail, fog, and even sunshine (pretty much every weather condition there can be in 2 hours). But look at this sweet face. Isn't she worth the wait? 

Thursday, March 24, 2016

NICU Journey Week 6 - The Great Flu of 2016 & Cross Stitchs

Anastasia's growth this week: 
Weight: 1315 Grams!! (Was 1180 Grams)
Length: 39 Centimeters 

(Was 36.5 Centimeters)
Age: weeks old 

(Should be 33 weeks gestation)

Yesterday was miserable. I had the flu with a fever of 101.7! I took several naps so I basically slept the day away. I have a horrible cough and have lost my voice. This makes it so I can't visit Anastasia. I couldn't even call to check on her, my voice was gone. Char had to call in for me. I wouldn't wish this on my worst enemy. Being ill and unable to see your child is just dreadful.

Here is a picture of a bear cub I made for her and Rory's room. 

Yep, still sick as a dog. In fact, my cough sounds like a bark. No visits in the near future.
I miss her so much!! I haven't seen her since Wednesday. 

In other news, Anastasia has been bumped to 28 calories (normal breast-milk / formula is 19-20 calories). She's just not growing as much as they want her to. Normally, a preemie should gain at least 15 grams a day on average. She's around 12 grams. One may think "Well 12 grams is close enough." But we need her to grow if we want her to start using a bottle in a week or two. She needs all the weight she can get because sucking on a bottle burns up calories like none other. 

I got to watch her get a bath via webcam tonight. She protested a little, once the nurse wrapped her up in her towel more snugly she calmed right down. Anastasia was very alert but passive during her bath. I hope she stays that way when she comes home. Maybe I'll need to visit at night sometime and someone can teach me how to bathe her the same way. Then the nurse played with Anastasia's curly black hair for a few minutes. It helps me to see that she's in good hands. 

Palm Sunday
If you guessed that I'm still sick, winner winner, chicken dinner!! Ugh. This sick thing bites. But now Char is getting it. Rory is having an awful time (this is the first time he's really been sick). 

I talked with a nurse today. I asked her what the employee rules are regarding the flu. She said they can't come in until their fever has been broken for at least 48 hours. That she has the same type of flu and missed work for nearly 2 weeks. That means I can go visit Anastasia maybe Wednesday more like Thursday. Sigh.  

She's a super sweet nurse, so I asked a favor of her. I asked her to hold Anastasia between cares for a little bit. The nurse replied that she'd never been asked that by a parent before. She normally holds babies when it's feeding time or if they're fussy but never when they are content. I told the nurse I just wanted someone to hold her and cuddle her. To let Anastasia know she's not forgotten about in the least. The nurse promised me she'd hold her and pass it on to the night shift as well. 

Still sick with the flu. I thought I was over it until my temperature returned at 102 F. So not fun. Rory is still sick too. Poor little guy. At least Anastasia is safe, sound, and doing well. 

I finally figured out what the rules are regarding visiting while ill. I'm hoping Wednesday or Thursday I can visit her.  We also made plans to visit family on Saturday / Easter Sunday. 

Yeap, still ill. But I feel like I'm getting better. I got an update on Anastasia. She's 2 pounds and 13 ounces! She's up to 25 mls per feed, which is almost an ounce. So almost an ounce of her is just food!! 

I have been watching Anastasia on the webcam off and on all day. I just miss her so much! I want to cuddle my tiny girl. My heart and arms ache just to hold her. I asked the night nurse to hold her for me again. I hoped to visit tomorrow but with my fever being what it was yesterday, I don't want her to get this bug. (Plus, there is a nasty snow storm brewing and that isn't a pleasant drive. Worth it if you can see your baby, otherwise, not so much).

Well got my hair cut today. Chopped off a foot, yep 12 inches. In other news we got Anastasia's crib today and got it all set up. It makes her coming home one day all the more realistic. 
Yes, still waiting for the fever to go away. I swear this flu hates me. 

So it looks like I won't see her until Friday or Saturday. Sigh. But here are some cross stitch I've been working on for her.  The first is a cute little fox pup. The second is a tiny baby bunny. 

Thursday, March 17, 2016

NICU Journey Week 5 - $250,000 Mark, Mother's Milk Bank, and a Cold

Anastasia's growth this week: 
Weight: 1180 Grams (Was 1090 Grams)
Length: 36.5 Centimeters Still (Was 36.5 Centimeters)
Age: 5 weeks old (Should be 32 weeks gestation)

We just got our first bills from the hospital. As of today, Anastasia has reach the $250,000.00 mark. Yeap, a quarter of a million dollars to survive. I can't help but think what a cool house that could get a person. I did the math and figured it costs roughly $8,100.00 a DAY to be in the NICU. 

She just might be our million dollar baby because we're looking at 2 more months in the NICU. Don't get me wrong here, I don't begrudge her in the least. It's just, wow, that's a lot of money. Like, we'll be on payment plans until she's in college.  

Tomorrow will be the first time I'll have seen Anastasia since Wednesday. Heidi Anne had bit of a cough, maybe even a cold. One might wonder, "Why does that matter?". It's easy, if you or someone in your family is sick you're not supposed to go to the NICU. Preemies have such weak immune systems that a simple cold can turn into pneumonia. Therefore, I haven't gone down to see Anastasia. I miss my baby girl so much, I can't wait until she's home and I don't have to plan these visits, she'll be right by me. 

This is the first time I've seen Anastasia since Wednesday. I didn't even say hi to the nurses, I just made a bee line right for her isolette and folded back the blanket. (Luckily, one of the nurses' recognized me.) I got some cute pictures of her waking up. She loves her nests.
As you can tell she isn't as big a fan when you remove her nest from her (she wouldn't face me while I tried to get a picture of her face). But it needs to be done so we can change her position and her diapers. As the nurse and I do her cares we discuss her growth, she's now 1120 grams (2 pounds 7 ounces). An increase of 80 grams since she was born. She's not growing as much as they would like but she could just be a tiny girl naturally.
Then came our favorite time, Cuddle time! I have tried for weeks to get a good picture of her during cuddle time, but they always came out blurred or just bad in general. Today, I finally got a good picture. She even sleep smiled a little. We got her brain ultrasound back today and everything came back normal, yeah! No brain bleeds (which is sadly common in preemie's as young as she is). 
While she was getting feed she started to suffer a weird reflux mixed with sleep apena. They have acid reflux and then they close their airways to protect from the reflux. It's just a thing preemie's do. But a side affect is their oxygen and heart rate go down. Since Anastasia is on room air (free of the nasal canula) they do open flow air. 
 It's amazing how little things like breathing on your own become a major accomplishment. Or getting feed a milliliter more and tolerating it, is a big deal. A degree lower in her isolete means she is starting to keep herself warm. All of these things we take for granted (breathing, staying warm, able to eat) are all things she is fighting to do every second of every day. You have to be a fighter to keep it up and not just survive but thrive. Imagine the will to live these tiny babies have.  
Before I knew it, our visit for the day was over. This was Anastasia just as we were finishing up her cares and about to nest her. She's getting more and more alert with each passing day.  

I finally have a baby that loves baths. According to the nurses she is just so calm like a little girl having a spa day. She likes to have her hair brushed- she's so tiny they brush her hair with a soft toothbrush. I finally got to see it via web cam. She stayed still as they put a bow in her hair, not a struggle or fit. She adores to be pampered. I think we have a Little Lady on our hands. 

 I only got to visit Anastasia for roughly a hour today. It was well worth it! I love every minute of cuddle time with her and we visit her as often as we can for as long as possible. Sometimes that's just 60 minutes other times that's a few hours. Her feedings have been increased to 22 mls!! Hopefully, these steps will help her grow. 
Rory came along for the visit today, we had doctors appointments today and a few errands to run. This little guy was just smiley, happy little boy the whole day. 
I just want to take a minute and thank those anonymous moms out there that have helped save my baby girl's life. My milk never came in and a preemie's tummy can't tolerate formula without serious side effects (like their intestines dying). See? Serious side effects. 

Luckily, in Utah there is an option for mom's like me, it's called Mother's Milk Bank. Basically, women who are lactating are generous enough to pump and donate their hard earned milk (or donate their frozen milk that they aren't using) to certain IHC Hospitals / clinics or to the U of U. From there it goes to Denver; where it's screened, pasteurized, and sent out to preemies and infants in need though out the Inter-mountain West. 
I'm normally an either / or breast milk or formula, who cares as long as the baby gets food? But this has been the only time I couldn't nurse a baby of mine that needed me to so badly. If Mother's Milk Bank wasn't around or if people didn't take time to donate who knows what issues we could be dealing with. I view it like someone donating blood, even an ounce can help save a life. I'm adding a link in case you're curious or want to donate, (just copy and paste it to the browser). I can't get it to link like it should. Now, I'm getting off my soap box. 

Anastasia's webcam is down today, it will be down permanently down starting April 1st (no joke). This isn't fun, I love watching her on webcam. I can pretend it's a nanny cam and she's just a room away, not 90 minutes in the hospital. I have been spoiled by the webcam. I love getting to see her every day. Guess I'll just have to call more then my current 2 times a day? 
It's just so hard having your baby hours away. I envy those families that are just down the road from the hospital. I try not to feel jealous towards anyone, to me it's a bad habit. But when moms are saying "I'm running home for lunch, be back in 45 minutes." I can't help be get a little teary eyed.    

I am tired! I did the early morning thing today. Today, however, involved a slight set back. I needed gas but the door to the gas opening had frozen shut. So I went to the gas station figuring "If I run out of gas at least this is the best place to be." I figured out that I needed another person to pop open the latch while I pried open the actual door. I waited 15 minutes for someone to help me out with my issue. It worked like a frozen glove. Man did I have to pry open that door, I didn't think it would open for a few seconds which seemed like forever, when finally I heard a screech as it popped opened. 

Then I got to enjoy a lovely drive in a snow storm through the canyon. In all this delayed me roughly 30 minutes later than I wanted to arrive at the hospital. Glad it wasn't an emergency. 
I got there in time for her cares. I love the way she wakes up. Once you un-nest and unwrap her, she'll immediately block her eyes from the lights with her little arms. Next, Anastasia will slowly remove one arm at a time from her eyes but keep them right by her face. (I guess in case we're just tricking her and we're going to wrap her back up?)
Then, she realizes she's not going to be bundled again until cares are over. She'll open her eyes one at a time while turning her face from left to right. Suddenly, she's alert and staring at you with her big mysterious eyes (they're not quite blue but not brown neither).
Finally, after she's getting cuddles or has been wrapped back up she falls back to sleep like a rock. Seriously, nested or cuddled and BAM! Back to sleep. Literally, those are the steps.

Good news! Anastasia doesn't suffer from a common preemie eye condition known as ROP (Retinopathy Of Prematurity). ROP can cause blindness in the worst case scenarios to distorted vision (basically needing glasses starting in infancy) in the best case. But somehow she's is ROP Free.

Anastasia also gained nearly 100 grams this week! That's an average of 12 grams per day! She's finally growing some. She needs to gain more (preferably 15 grams per day - not an average-but a minimum of 15 grams a day). 

In other news, I have a slight cough. It could be a cold so I can't visit Anastasia until this is resolved. Which bites but better I have a cold and not visit her then visit her with a cold and she ends up with pneumonia. I'm not being paranoid, it's been known to happen because a preemie has such a compromised immune system.  I heard this story of a mom visiting her baby while she had cold and after five minutes of sneezes and coughs the nurses kicked her out of the NICU. Sadly, the cold passed to her baby (which passed away from pneumonia) and infected 6 other babies (who all survived but suffered in various degrees). I don't want to be that mom that infects other babies because some little ones are in open air bassinets.

By the way, we're looking into bassinets for Anastasia, any recommendations? 


Thursday, March 10, 2016

NICU Journey Week 4 - Heart Murmurs, Setbacks, and Good News

Anastasia's growth this week: 
Weight: 1090 Grams (Was 1080 Grams)
Length: 36.5 Centimeters (Was 36 Centimeters)
Age: 4 weeks old  (Should be 31 weeks gestation)

Today I was going to go visit Anastasia, but I think I caught a stomach bug, so I didn't go to be on the safe side. Hopefully, I'll be able to see her tomorrow. Wish me luck. 

Moment of honesty here, sometimes I look down at my still swollen stomach and fell so hollow inside. My baby should still be safe in my stomach. She shouldn't be getting echocardigrams, be on oxygen, or have a feeding tube. I should be 30 weeks along. What I would give to still be pregnant with bad ache, backaches and needing half a dozen pillows to sleep. Because I have sleepless nights worrying about her, what could go wrong. Telling myself not to worry. But, I still do and end up calling the NICU at all hours of the night. I'm praying more then I ever have in my life. Especially while holding her in the NICU. 
It may be silly but I sometimes blame myself for her coming so early. Logically, I know I had no control over my water breaking (much less getting sepsis). I know she's in good hands. I know delivery was the ONLY way to save both of us. I know God works in mysterious ways, but I still wish I were pregnant at times. This is one of those times. 

As of earlier this afternoon Anastasia is Oxygen support free! They took her off O2 since she was at room oxygen (21%) and down to the second lowest setting which is just 1 liter. A funny side note, she kept pulling out the nasal canula anyways and was managing okay. So they took her cues and removed it. We'll see how it goes. 

Well, Anastasia is back on oxygen. She kept hovering close to the bad borderline so back on O2 she went. This time she is at the lowest setting half a liter and 21%. I went down to visit her today, which sounds simple but it entails a lot of time and blurred emotions. A typical visit goes like this: 

The night before Char and I choose whither or not the whole family is going or just me. If we have just Rory we tend to go as a family. However, on Saturdays, we tend to decide that I go alone so we don't have 2 kids being dragged along everywhere or in a crowed waiting room. 
In the morning I'm nervous and excited to go see my tiny baby girl. Yet, I feel bad that I'm missing time with my baby boy and Heidi Anne. Then I feel like I don't visit Anastasia enough. The drive down is filled with these conflicting feelings. Half the time I almost back out of the visit if I'm going alone. To help take my mind off the conflict I listen to some Podcasts from Stuff You Should Know, Stuff You Missed In History Class, and Stuff Mom Never Told You. I get to learn something new and it holds my attention. Before I know it I hit the half way mark and shortly after I'm near the hospital.

I park the car and do a weird walk / jog mix so I can see my baby sooner. I will do a full blown run to reach an elevator going up despite the fact there are like 4 elevators. Then I walk what I call the NICU mile. The parking is on one side of the hospital and the NICU is nearly on the other side. On Weekends you have to walk these empty halls that are normally full of life and it just adds an ominous feeling to the start of a visit. 

Then you come into the NICU waiting room where it's full of family members, friends, and siblings of other patients (babies). It helps remind me that we're not the only family going through this journey nor will we be the last. I scrub my hands and start a prayer.

I pray so much when I'm in the halls of a NICU. I pray for Anastasia, I pray for her doctors and nurses that they'll know how to care for her. I pray for the other babies, especially the ones worse off then her. I pray for the other moms. I pray I can get through this visit without crying in front of her. (That hardly ever happens). 
After I sign in I head for her room. During this visit I ran into her doctor and we discuss her heart murmurs a little. The main one we're concerned about is called a PDA. It went from a Severe hole (the worst level) down to a Large one (second to worst). Yeah! They can't tell yet if it's pinching her Aortic Arch (which is bad) because her whole is so large it blocks the arch on ultrasound. 

I go to her room and make a bee line for her isolette. Again praying along the way that I can hold her and be brave for the both of us. I talk with her nurse and get caught up on how Anastasia is doing. Today there was a set back. She went from 1080 grams down to 1020!! I asked to speak with the APRN because that's quite the drop in weight and to see what our options are. 
Then the fun begins. I do her cares with the nurse (change her diapers, take her temperature, start her feedings, ect). Then I got her down to her clean diaper (that I had changed) and got ready for my favorite part, we got to cuddle. Oh, today we cuddled for nearly 3 precious hours. I am always amazed at how time flies when I'm finally holding this tiny 2.4 pound baby in my hands. It's times like this all logical goes out the window and I wish I could stay in the guest house and just spend all day with her. But there is a great lack of funding for this to even be feasible

I've been concerned about her lack of growth but I've been told she's in a holding pattern. But now that she's below her birth weight (even if we average it). I wanted to talk with the APRN, who tried to tell me not to worry about it. I argued my case; that she isn't growing length wise; she's losing weight, that something else needs to be done because this isn't okay. The APRN said they would have a meeting on Monday with the dietitians, the doctor, and the cardiologist in case her heart murmurs are attributing to her smaller size. With my Mama Bear duty done, I resumed starring at my tiny miracle and prayed she'd grow (length or weight, I'm not picky at this point). 

Then comes the hateful part, when I have to leave. I take Anastasia from her curled up, warm and cozy cuddles and back into her isolette. I want to stay with her but I know the rest of the family needs me, too. (Thanks to online forums, other moms have the same conflict they deal with.) As I leave, with tears in my eyes, I say one last prayer for this visit to the NICU. 

Today I had a little present for Anastasia. Our family made a blanket / isolette cover for Anastasia. We're trying to include Heidi Anne as much as possible when it comes to doing things for Anastasia.  

I can't visit Anastasia on Sundays. Char has to work the Graveyard shift on Saturday, gets home at 7:30 am Sunday. Takes a nap and then has to go to work for the Swing shift on Sunday at 2:45 pm. I wish his schedule was a little different so I could go visit her, but it is what it is. This is one of the many reasons why staying down for the weekend wouldn't work for me, as much as I might want it to. 
We were watching Tangled as a family and this scene describes how it feels to be torn between 3 children (2 at home and 1 in the NICU) perfectly!! 

We tried some new things today. The first was what time I went to go visit Anastasia. We're trying to find a balance between hospital time and rest of the family time. (A.K.A Less "Tangled" moments). So I left to go visit super early in the morning. Char got up with Heidi Anne and Rory, got them ready for the day, and Heidi Anne off to school. While I drove to the hospital and spent nearly 6 hours down at the hospital with Anastasia. I got home around noon-ish. 
I got to go to rounds for the very first time. Rounds are when everyone involved in the babies' care meet to discuss each infant's needs. I really mean everyone; the doctors, nurses, social workers, developmental therapist, dietitians, pharmacists, insurance specialist, ect. Parents are encouraged to attend but it's so early in the morning I've never had the opportunity to go before. 

I'm glad I got to go because I was able to bring up some concerns I have but they hadn't been addressed. The biggest issue has been her weight. She hasn't gained an ounce since she was born nearly a month ago. Sure she's gained a few grams but then she quickly loses whatever she put on, ending up back where we started. I've brought this up to nurses but nothing seems to change. Honestly, how can she maintain body heat if she has nothing to warm up? She's surviving but I want her to thrive. (I told that to the rounds group). 
Finally, the group at rounds listened to me. They added fortifiers to her food as well as a lot more calories (from 22 to 26). Normal breastmilk / formula contain roughly 19/20 calories alone. Hopefully, this will give her the energy she needs to pack on the pounds. Just pray Anastasia's stomach can tolerate the extra calories. It was explained to me it's like we're feeding her a turkey dinner for every meal, we just don't want her to get so stuffed she can't take it anymore. We want her to say "More Food!!" 

Lucky Day! Got to visit her 2 times in a row. It might have only been for a little over a hour but it was great to hold her. I don't care how long or how short, it's worth it all to cuddle my Tiny Anastasia. 
The reason for today's short visit was Rory had a Well Child check up. He is doing good and right on target, but he did get some shots. He did really well, he hardly cried. But we knew we had a ticking time bomb of a toddler who would want to be home sooner then my normal visits. It just happened that we got there a hour before her normal care times. I made the most of our little visit together.
I was able to talk to the APRN and get some good news regarding her heart murmurs. They did an new echocardiogram gram this morning and the results were her heart murmurs are getting smaller.They even sound quieter when you listen to her heart. Since she's no longer symptomatic (showing signs of stress) they are going to hold treatment. Once she's released from the hospital the pediatrician will monitor the murmurs to see if they get worse.
All of this is good news. It's an answer to lots of prayers. It just means she may never be a marathon runner like her aunts and grandpa, but they need a cheer squad anyways. It also means that she could stay on the dainty side her whole life.

She also sucked on her binki for the first time today! I didn't get a picture of it but the nurse saw it, too. At least I have a witness. 

Well, we did the early morning visit thing again this today. It's been nice to see all 3 of my babies in the morning and be back home in time to spend the day with the older 2 babies. Today, I pulled back the blanket from her isolette and was greeted by an alert baby girl. Doesn't she look so comfy in her little nest? 
I think she's starting to get used to this every 3 hours schedule where; someone comes, visits me, changes me, moves me, and feeds me. The NICU has some books on hand for parents to read to their babies and I borrowed a few to read to her today. I also read some Shel Silverstine poems from my phone. It was sweet bonding time until I played a song on my phone by accident. She was not a fan of going from me reading Ickle Me, Pickle Me, Tickle Me, too. to having a song blast from my phone. She let out the loudest cry! It shocked the nurses when they found out the yelp came from Tiny Anastasia. 
Today was nice as I got talk with another NICU mom.  I got to see another baby leave the NICU whose been there since December. At the same a new baby was brought in for what will be a short NICU visit. One day it'll be us leaving the hospital. It's the NICU circle of life I guess. This is a cute picture of her yawing (no screaming when she heard the music). 

No visits today. Rory really wanted me to stay home this morning. I figure Anastasia will understand. She does turn a month old today! I can't believe she's been around for 4 weeks today! I should still be pregnant for another 2 more months.