As I sit here replaying the events of 2017 in my head, a constant phrase keeps coming to mind. A phrase I’ve stopped and reminded myself of all year. A phrase that in retrospect, represents the trials I’ve been through, the tears I’ve cried, the strength I had to dig deep for in the hardest days. That phrase?
“This too, shall pass.”
It’s been such an eventful year. Now let me tell you, I had big big plans for this year. The majority of this year was my Jesus year. I had turned 33, and like many others, I made a huge list of all the major things in my life I wanted to accomplish, because if Jesus could do all he did in 33 years on this Earth, I could at least focus one year on what I really wanted to do in life. I could make big scary changes. I could be brave.
The first and biggest blessing of the year came on what was to me a sad day. January 5, 2017 would have been our second child’s due date, but that pregnancy ended last year and it wasn’t actually the day we dreamt of. It was a hard day for me.
Breathe, Elaina. This too, shall pass.
For some reason I felt like I needed to take a pregnancy test that day. Ha, I thought, that is the most ridiculous and awful thing I could do on an otherwise emotional day for me. But i kept feeling that feeling, that gut instinct, maybe that something good might become of this awful day. So on the way home from work, I bought a test. It wasn’t even first thing in the morning, or on a stomach full of liquid, but i did it. I was prepared for heartbreak on top of heartbreak. But on January 5, 2017 I found out I was pregnant with my rainbow baby....
Jussst in time for year end close at work with the most unaccepting, unaccomodating boss I’ve ever had the experience of working with.
Breathe Elaina. This too, shall pass.
I had already made plans to bring life to a more manageable pace this year. I had already had conversations with Jason of things needing to be LESS hectic this year. We had talked about me stepping back in my career to focus on family for months. And so in May, surrounded by awful circumstances, and not the way anyone wants to end a 10 plus year career, I quit my job.
Breathe Elaina. This too, shall pass.
Two weeks later, I was put on bedrest, which lasted for almost a month.
Breathe Elaina. This too, shall pass.
Obviously, you guys know then my miracle girl was born in July. I’m so happy, but it was a terrifying experience at 9 weeks early. She was in the NICU for 30 of the most terrifying and unpredictable days of my life.
Seeing a theme here? Breathe Elaina...
She came home in August, and we thought we were adjusting well. I questioned my instincts when I found out she had been struggling with reflux and food sensitivities. I lost more sleep than i ever have as she didn’t sleep through the night until December. I cried in panic as I’m such a financial person and all the medical bills started piling in 3 months after I quit my job.
This too, shall pass.
In November, walking down a friends driveway, I tripped, face planted, and broke my ankle. I’m getting to spend the rest of the year in a walking boot while it heals, but thankfully I don’t need surgery.
Yep...this too, shall pass.
In December, instead of being the one helping my husband and helping us have a less stressful life, i had to lean on him for most everyday things. I’ve needed help getting Brady to and from school, Madelynn and myself to and from numerous doctors appointments, help doing everyday chores around the house, and even help getting in and out of the shower and dressing myself.
This too, shall pass.
Although in between all of this madness, there has been a lot of gratitude for life, family, and our tribe, I will say I will be the first to welcome a new year with open arms. I NEED a fresh year. Our family needs a break from all of 2017’s punches in the gut. This New Year, I will be focusing on being intentional, yet knowing that I can’t control everything. I’m going to do my best to breathe in, focus on what blessings I do have, and hopefully get a break from saying that phrase that now rolls out as if it were something that SHOULD be saying every day, like good morning, good night, thank you, or have a nice day. But to finish off the year with one final time, as I sit here, thinking about 2017.
I take a deep breath and remind myself this too, shall pass.
Wednesday, December 27, 2017
Monday, December 18, 2017
Monday 12/18/17
“I don’t remember getting this frustrated with Brady, do you?” Jason said to me, after almost an hour of solid screaming from Madelynn tonight. “We weren’t. It was...different with him. He didn’t have problems we didn’t know how to fix. It wasn’t like this...”
It’s been another rough couple of weeks for my girl. We switched up reflux meds again and she is still...seriously, still having issues...inconsistent issues, but issues none the less. It’s draining. We saw the GI specialist for another update. We told her how things had significantly improved with Madi eating, but that the reflux (or something) still seemed to be bothering her. Oh, and she’s teething, yay. Anyway, the GI Dr changed up the timing of her meds, going from twice a day to now three times a day. She also (warning, gross) looked at her stool and had some concerns. She is suggesting that we try ready-to-feed formula instead of powder, as she thinks Madi may now also have a sensitivity/allergy to corn and powder contains corn.
I mean...how do they know all of these things? No milk, no cheese, no steak, no ground beef, no yogurt, no corn? What if that isn’t it, what do we try then? She’s pushing for us to start solid foods in a couple weeks...hoping that will shed some light on foods she can and can’t digest or has issues with. I’m over it tonight though. I sure wish there was an easy button...
In more exciting news, I got word from my dr that I won’t need ankle surgery recently, so that’s a small positive. A few more weeks in this boot and hopefully life can return to semi normal. I can tell you one thing though...twenty seventeen has jokes. I don’t like them, but it seems to think they are funny.
It’s been another rough couple of weeks for my girl. We switched up reflux meds again and she is still...seriously, still having issues...inconsistent issues, but issues none the less. It’s draining. We saw the GI specialist for another update. We told her how things had significantly improved with Madi eating, but that the reflux (or something) still seemed to be bothering her. Oh, and she’s teething, yay. Anyway, the GI Dr changed up the timing of her meds, going from twice a day to now three times a day. She also (warning, gross) looked at her stool and had some concerns. She is suggesting that we try ready-to-feed formula instead of powder, as she thinks Madi may now also have a sensitivity/allergy to corn and powder contains corn.
I mean...how do they know all of these things? No milk, no cheese, no steak, no ground beef, no yogurt, no corn? What if that isn’t it, what do we try then? She’s pushing for us to start solid foods in a couple weeks...hoping that will shed some light on foods she can and can’t digest or has issues with. I’m over it tonight though. I sure wish there was an easy button...
In more exciting news, I got word from my dr that I won’t need ankle surgery recently, so that’s a small positive. A few more weeks in this boot and hopefully life can return to semi normal. I can tell you one thing though...twenty seventeen has jokes. I don’t like them, but it seems to think they are funny.
Friday, November 3, 2017
Friday 11/3/17
Let me start this blog off by saying some of you will read this and will judge me. Some of you will read this and would have done something different if you were in my situation. Some of you will read this and think you have all the answers....
Let me also start this blog by saying there is a significant amount of guilt that I feel. Trust me, there is always a part of me that will wonder if I made the right call, the right decision...honestly which happens all the time. It's not news when I say that moms can be SO opinionated. Moms can think there is only one way to do things...theirs. Moms will turn their nose up because you aren't doing it the way society says, you know, the way other good moms do things. You must be a terrible mom if you are different.
At church the other week, they shared this viral quote, and I couldn't agree more:
How to be a parent in 2017:
Make sure your children's academic, emotional, psychological, mental, spiritual, physical, nutritional, and social needs are met while being careful not to overstimulate, understimulate, improperly medicate, helicopter, or neglect them in a screen-free, processed foods-free, GMO-free, negative energy-free, plastic-free, body positive, socially conscious, egalitarian but also authoritative, nurturing but fostering of independence, gentle but not overly permissive, pesticide-free two-story, multilingual home, preferably in a cul-de-sac with a backyard and 1.5 siblings spaced at least two years apart for proper development, also don't forget the coconut oil.
How to be a parent in literally every generation before ours:
Feed them sometimes.
Seriously guys, parenting is hard. Making the right call is hard. The pressure is real. So give me some grace as you read this, please.
We have been visiting the doctor for almost two months now on feeding issues. No matter what I had tried to this point, Madelynn was still screaming during feeding, her tummy hurting and upset, and vomiting at least a few times a day. She had been on two different reflux medications, which I felt were helping, but it seemed like it would only be a few days and then we'd be back to square one.
So they told me to start looking at my diet and see what she might be sensitive to, so I did. They recommended eliminating dairy, so I did. I waited two weeks, and no change, still screaming, still in pain. They recommended limiting caffeine, so I did. No change. They recommended limiting spicy foods, so I did. No change. They recommended eliminating all cow protein, no steak, no ground beef, bye bye tacos and queso. And I did that. Another two weeks pass and it still....didn't...change anything. All of this took place over almost two months of screaming, crying, awful feedings where she'd barely eat.
So last week, the doctor told me maybe it might not be a bad idea to try to do a hypoallergenic formula for especially sensitive tummies. I told them there was no way that formula could be better for her than my milk, because, science and nature. I told them we just needed to switch up her reflux meds again, that we could try that again...but they told me just to give it a try and see what happened.
So I gave my baby formula. The first feed, this happened:
She's never been smiley and happy after eating. So I did it again, and again...and this happened:
Let me also start this blog by saying there is a significant amount of guilt that I feel. Trust me, there is always a part of me that will wonder if I made the right call, the right decision...honestly which happens all the time. It's not news when I say that moms can be SO opinionated. Moms can think there is only one way to do things...theirs. Moms will turn their nose up because you aren't doing it the way society says, you know, the way other good moms do things. You must be a terrible mom if you are different.
At church the other week, they shared this viral quote, and I couldn't agree more:
How to be a parent in 2017:
Make sure your children's academic, emotional, psychological, mental, spiritual, physical, nutritional, and social needs are met while being careful not to overstimulate, understimulate, improperly medicate, helicopter, or neglect them in a screen-free, processed foods-free, GMO-free, negative energy-free, plastic-free, body positive, socially conscious, egalitarian but also authoritative, nurturing but fostering of independence, gentle but not overly permissive, pesticide-free two-story, multilingual home, preferably in a cul-de-sac with a backyard and 1.5 siblings spaced at least two years apart for proper development, also don't forget the coconut oil.
How to be a parent in literally every generation before ours:
Feed them sometimes.
Seriously guys, parenting is hard. Making the right call is hard. The pressure is real. So give me some grace as you read this, please.
We have been visiting the doctor for almost two months now on feeding issues. No matter what I had tried to this point, Madelynn was still screaming during feeding, her tummy hurting and upset, and vomiting at least a few times a day. She had been on two different reflux medications, which I felt were helping, but it seemed like it would only be a few days and then we'd be back to square one.
So they told me to start looking at my diet and see what she might be sensitive to, so I did. They recommended eliminating dairy, so I did. I waited two weeks, and no change, still screaming, still in pain. They recommended limiting caffeine, so I did. No change. They recommended limiting spicy foods, so I did. No change. They recommended eliminating all cow protein, no steak, no ground beef, bye bye tacos and queso. And I did that. Another two weeks pass and it still....didn't...change anything. All of this took place over almost two months of screaming, crying, awful feedings where she'd barely eat.
So last week, the doctor told me maybe it might not be a bad idea to try to do a hypoallergenic formula for especially sensitive tummies. I told them there was no way that formula could be better for her than my milk, because, science and nature. I told them we just needed to switch up her reflux meds again, that we could try that again...but they told me just to give it a try and see what happened.
So I gave my baby formula. The first feed, this happened:
My girl had finally stopped crying. Now that we knew the problem was something she was sensitive to in my diet, I could have spent another two months or more eliminating one food, waiting a week or two, and seeing if that was it. Or...I could give her hypoallergenic formula, and she would eat....and be full...and...gasp...happy!
I have very minimal guilt with this choice....there's always a tiny part of me which will say I should have tried more. But then again, the other part of me says let her lead me, I'm not in charge, and she not crying when she's eating anymore!
And then my wonderful best friend sent me this as a reminder and I immediately remember my four year old who will only eat chicken nuggets...
I'm trying my hardest to remember this. It's just a moment in time. If this was another mommy who decided to formula feed, I would seriously high five her, have zero judgement, because I personally believe everyone does what works best for them. But when it comes to myself, I'm a little (a lot) harder on myself (can I get an amen ladies). Anyway, so that's the update. My girl eats now. And she's happy. And gaining weight. And it's ok. She's going to be a hypoallergenic formula fed baby.
Also very ironically she was milk for Halloween, and I was cheese...both dairy things she can't handle lol.
Have a good week, friends! Stay happy, healthy, and eat lots of queso and tacos in celebration with me.
Friday, October 20, 2017
Friday 10/20/17
What a week...now that my girl is finally turning the corner on all of the crazy, I have time to post an update.
It's somewhat comical in retrospect for me to have thought this way...but in my naive little brain I thought once we left the NICU we'd be done with medical challenges. I was wrong. I'm learning...and tired.
This week was full of doctor's appointments. The first appointment was a swallow study to evaluate Madelynn while she is eating. They basically hold her in a carseat, give her milk using different consistencies and nipples, and have an imaging machine that shows the liquid as she swallows down the esophagus.
She seemed to do ok with the level one nipple (the one we had use at home), however she took a really long time to eat (feedings at home were taking up to an hour per feed). They decided to use a level two nipple and she ate much faster, however she began aspirating. They also noted with both levels, she had an uncoordinated pattern of suck, swallow, breathe. To accommodate this, they tried thickening the milk. Once they thickened it, she did fantastic with the level two with no aspirating...success. So since then we have been doing exactly that and feedings are going much faster and much less crying.
The second appointment was with a GI specialist. I'm secretly in love with this doctor...everything she did from mannerisms to explanations to patient interaction was fantastic. Anyway, she evaluated Madi and explained that she has what is called the preemie trifecta. She has poor muscle tone in her swallow, reflux, and poor coordination...as well as colic. She encouraged me and kept asking if I was ok...I'm sure she could see the exhaustion in my face. She recommended smaller feeds and more often (every two hours instead of every three). As I accepted that fate, I took a deep breath and reminded myself I can handle whatever comes our way...as long as my girl gets better.
Appointment three was the next day with the developmental pediatrician. We are required to go to these appointments at least until age two as that is the typical "catch up" time for preemies. After the first two appointments, I was mentally prepared for bad news. My regular pediatrician had even warned me not to get too upset, that they would probably give me a percentage of how she compares to babies with no issues. So I was prepared. I think God knew I couldn't handle much more, but I was prepared. The doctor put Madi on a table and started doing various exercises with her...does she follow my voice...does she follow it with her head horizontally and vertically...does this reflex make sense...does she get in a specific position when placed on her tummy, does she push off with her legs when the stands, focus on faces...etc etc. I am incredibly relieved and overwhelmingly happy to report that she passed every. single. test. EVERY SINGLE ONE. They said at this point she is not developmentally delayed for her adjusted age...so we just follow up in a couple of months. THANKFULLY something went right.
It's amazing how even though all of these things are somewhat out of my control how draining it can be and how much it makes me feel like I failed in a way. But the developmental appointment gave me a breath of fresh air and gives me hope that I can handle this. We just have to get past the few other things...and with all of the recommendations from the various doctors Madi has been having a great end to her week.
Oh...also, she turned 3 months on the 16th. In all of the crazy I forgot to take pictures until this morning...but I did finally. This past month has been difficult with not much going on besides crying, refusing to eat, and being held. But two days ago, my girl started semi smiling, and responding with sweet baby sounds (other than grunts!) when I talk to her...hoping we continue down a happy, healthy road.
It's somewhat comical in retrospect for me to have thought this way...but in my naive little brain I thought once we left the NICU we'd be done with medical challenges. I was wrong. I'm learning...and tired.
This week was full of doctor's appointments. The first appointment was a swallow study to evaluate Madelynn while she is eating. They basically hold her in a carseat, give her milk using different consistencies and nipples, and have an imaging machine that shows the liquid as she swallows down the esophagus.
She seemed to do ok with the level one nipple (the one we had use at home), however she took a really long time to eat (feedings at home were taking up to an hour per feed). They decided to use a level two nipple and she ate much faster, however she began aspirating. They also noted with both levels, she had an uncoordinated pattern of suck, swallow, breathe. To accommodate this, they tried thickening the milk. Once they thickened it, she did fantastic with the level two with no aspirating...success. So since then we have been doing exactly that and feedings are going much faster and much less crying.
The second appointment was with a GI specialist. I'm secretly in love with this doctor...everything she did from mannerisms to explanations to patient interaction was fantastic. Anyway, she evaluated Madi and explained that she has what is called the preemie trifecta. She has poor muscle tone in her swallow, reflux, and poor coordination...as well as colic. She encouraged me and kept asking if I was ok...I'm sure she could see the exhaustion in my face. She recommended smaller feeds and more often (every two hours instead of every three). As I accepted that fate, I took a deep breath and reminded myself I can handle whatever comes our way...as long as my girl gets better.
Appointment three was the next day with the developmental pediatrician. We are required to go to these appointments at least until age two as that is the typical "catch up" time for preemies. After the first two appointments, I was mentally prepared for bad news. My regular pediatrician had even warned me not to get too upset, that they would probably give me a percentage of how she compares to babies with no issues. So I was prepared. I think God knew I couldn't handle much more, but I was prepared. The doctor put Madi on a table and started doing various exercises with her...does she follow my voice...does she follow it with her head horizontally and vertically...does this reflex make sense...does she get in a specific position when placed on her tummy, does she push off with her legs when the stands, focus on faces...etc etc. I am incredibly relieved and overwhelmingly happy to report that she passed every. single. test. EVERY SINGLE ONE. They said at this point she is not developmentally delayed for her adjusted age...so we just follow up in a couple of months. THANKFULLY something went right.
It's amazing how even though all of these things are somewhat out of my control how draining it can be and how much it makes me feel like I failed in a way. But the developmental appointment gave me a breath of fresh air and gives me hope that I can handle this. We just have to get past the few other things...and with all of the recommendations from the various doctors Madi has been having a great end to her week.
(Raise your hand if you are feeling better!)
Oh...also, she turned 3 months on the 16th. In all of the crazy I forgot to take pictures until this morning...but I did finally. This past month has been difficult with not much going on besides crying, refusing to eat, and being held. But two days ago, my girl started semi smiling, and responding with sweet baby sounds (other than grunts!) when I talk to her...hoping we continue down a happy, healthy road.
Monday, October 16, 2017
Monday 10/16
Today I'm drained. Today I'm exhausted. Today Madi is barely eating. Barely eating in the sense that she is not even close to her minimums. Barely eating in the sense that I talked to the pediatrician on the verge of tears today. Barely eating in the sense that I got so excited when she finally ate two ounces...only to be followed by throwing them up. Barely eating in the sense that I missed my MOPs meeting and our last session of the parenting conference tonight. Barely eating in the sense that I asked my husband to come home early tonight. Barely eating in the sense that I need all of the wine.
We need answers. Please pray for answers...
Thankfully the pediatrician pulled some strings and called the imaging center and put priority on our appointment for the swallow study...it's now tomorrow morning. He also scheduled a follow up with a GI specialist tomorrow afternoon. I've never had a ped schedule an appointment for me before, but I'm thankful they did. Tomorrow we will hopefully have answers. But more than answers, we need a solution. I need my girl to be better. I need her to eat.
We've got a developmental pediatric appointment the following day as well. If you could, please just keep us in your prayers...
We need answers. Please pray for answers...
Thankfully the pediatrician pulled some strings and called the imaging center and put priority on our appointment for the swallow study...it's now tomorrow morning. He also scheduled a follow up with a GI specialist tomorrow afternoon. I've never had a ped schedule an appointment for me before, but I'm thankful they did. Tomorrow we will hopefully have answers. But more than answers, we need a solution. I need my girl to be better. I need her to eat.
We've got a developmental pediatric appointment the following day as well. If you could, please just keep us in your prayers...
Tuesday, October 10, 2017
Tuesday 10/10/17
Mama said there'd be days like this, there'd be days like this mama said (mama said mama said)...
Today has been rough. Scratch that, these past couple of weeks have been rough. Per my handy dandy Fitbit, I got four hours and twenty five minutes of sleep last night...and I am feeling it. Madi had a rough day today. Poor thing can't catch a break with eating. We are now on two reflux meds, formula only until dairy is out of my system, anti gas drops, anti colic drops, and two probiotics...and still. Having. Tummy. Troubles. It breaks my heart to see my girl in pain when she eats. The doctor ordered a swallow study to get more information, but the earliest we can get in is October 26th. We could use some prayers that some of this mess works itself out before then. We have good days that make me think we are in the clear...but other days I feel like we are back at square one and barely eating.
In more fun news, we paid the NICU a visit this weekend. If I can't use my dairy-full milk for my sweet girl, we felt like it was best to donate it to sweet babies who need it in the NICU. It was fun seeing some familiar faces and more fun to leave as a family knowing we wouldn't be back in a couple of hours.
Since we ended up cancelling our trip to San Antonio, we were also able to get a few things done around the house...and Jason and Brady got to take some much needed naps.
This week, we are focusing on being intentional in our family time. I'm super excited about a surprise we've been planning for Mr. Brady for tomorrow...I can't wait to get him ready for school tomorrow only to tell him we won't be going to school and that we will be going to the state fair. He's at a great age to enjoy the kids activities, so I can't wait to spend some quality family time with just the four of us there!
Oh, one more fun fact...I got to spend my first couple of hours with some wonderful mom friends last night...the first time without Madi. I only got a couple of text messages from Jason during the dinner and they were both to tell me that the kiddos were stil alive...joke...that they were both bathed and semi down for the night.
Anyway, on four hours of sleep this blog probably sounds fantastic and makes lots of sense and I'm forgetting all of the things I was supposed to be updating everyone on. Pray for my girl...this mama is getting tired. I need my girl to eat normally, eat enough, and not be in pain...and I need sleep.
Today has been rough. Scratch that, these past couple of weeks have been rough. Per my handy dandy Fitbit, I got four hours and twenty five minutes of sleep last night...and I am feeling it. Madi had a rough day today. Poor thing can't catch a break with eating. We are now on two reflux meds, formula only until dairy is out of my system, anti gas drops, anti colic drops, and two probiotics...and still. Having. Tummy. Troubles. It breaks my heart to see my girl in pain when she eats. The doctor ordered a swallow study to get more information, but the earliest we can get in is October 26th. We could use some prayers that some of this mess works itself out before then. We have good days that make me think we are in the clear...but other days I feel like we are back at square one and barely eating.
In more fun news, we paid the NICU a visit this weekend. If I can't use my dairy-full milk for my sweet girl, we felt like it was best to donate it to sweet babies who need it in the NICU. It was fun seeing some familiar faces and more fun to leave as a family knowing we wouldn't be back in a couple of hours.
Since we ended up cancelling our trip to San Antonio, we were also able to get a few things done around the house...and Jason and Brady got to take some much needed naps.
This week, we are focusing on being intentional in our family time. I'm super excited about a surprise we've been planning for Mr. Brady for tomorrow...I can't wait to get him ready for school tomorrow only to tell him we won't be going to school and that we will be going to the state fair. He's at a great age to enjoy the kids activities, so I can't wait to spend some quality family time with just the four of us there!
Oh, one more fun fact...I got to spend my first couple of hours with some wonderful mom friends last night...the first time without Madi. I only got a couple of text messages from Jason during the dinner and they were both to tell me that the kiddos were stil alive...joke...that they were both bathed and semi down for the night.
Anyway, on four hours of sleep this blog probably sounds fantastic and makes lots of sense and I'm forgetting all of the things I was supposed to be updating everyone on. Pray for my girl...this mama is getting tired. I need my girl to eat normally, eat enough, and not be in pain...and I need sleep.
Sunday, October 1, 2017
Sunday 10/1/17
Holy Toledo, Batman, is it already October? It feels like just yesterday was July. Here's your first fall update from the Pykas...
Well, crap. Madelynn has officially had her first preemie hiccup. We've gone to several doctor appointments and have been cleared of several scary things which is awesome. But Madi started acting "not herself" this past Monday. We haven't done much in public, have limited visitors and visitation, and still she seemed to get sick. She started screaming in pain when I fed her on Tuesday. I called the pediatrician (who seems to be on speed dial these days) and he called in a prescription for reflux. After giving her the medication, she seemed pretty good but then things got worse.
Wednesday and Thursday she was eating much less (about 2/3 of what she normally does). Thursday evening she began only eating an ounce per feeding (less than half of what she is required for her very minimum). I started to get scared. I made an appointment for Friday and our pediatrician got us in pretty quickly. Instead of taking a minimal let's change one thing approach, he decided it was best for Madi to "throw us the book" and change all of the things. He noticed she had red skin which was indicative of a dairy sensitivity, so he suggested we eliminate dairy from my diet and switch her to a hypoallergenic, dairy free formula for fortification (extra calories). He also diagnosed her with colic, recommended colic drops, a probiotic, and gas drops in every bottle. He also increased her dosage of her acid reflux meds he had called in Tuesday. So then the waiting game began for her to feel better.
When we got home, I realized quickly the change to non-dairy everything helped her skin, but my stash of milk that I have worked so hard to get these past few months is all no good now. Sad face, but I can now bless the NICU babies with some milk and pay it forward to those mommies who helped me (but still, hard to let all of this go).
Saturday Madelynn seemed to be doing worse and worse. I hate not spending as much time with Brady and focusing all of my attention on her, so thankfully my mom let him stay the night with her so we could focus on Madi feeling a little less guilty. We ended up switching back to preemie nipples for her feedings to see if that helped, and it seemed to help significantly. Finally Madi was eating. Today, she can still use prayers, she is sometimes up to 60 ml (her absolute minimum required per feed) but others she gets barely 30 ml. I have a feeling that tomorrow we will be giving our good friend Dr. Straughn another visit...this girl doesn't have too much weight to lose without putting her health in jeopardy. We have a weekend trip planned for this coming weekend...if Madi isn't back to her normal self by tomorrow or Tuesday it looks like that trip may be postponed...keep her in your thoughts.
The health hiccup aside, I have really enjoyed spending some time with Madi and Brady at home. He loves helping his sister play, singing to her, showing her lots of cool things and teaching her magic tricks.
We've enjoyed playing legos, walks in the neighborhood to the park, feeding ducks, football Sundays, and family naps when we are lucky. I love this little family of mine, and am super thankful for each day I have with them.
Well, crap. Madelynn has officially had her first preemie hiccup. We've gone to several doctor appointments and have been cleared of several scary things which is awesome. But Madi started acting "not herself" this past Monday. We haven't done much in public, have limited visitors and visitation, and still she seemed to get sick. She started screaming in pain when I fed her on Tuesday. I called the pediatrician (who seems to be on speed dial these days) and he called in a prescription for reflux. After giving her the medication, she seemed pretty good but then things got worse.
Wednesday and Thursday she was eating much less (about 2/3 of what she normally does). Thursday evening she began only eating an ounce per feeding (less than half of what she is required for her very minimum). I started to get scared. I made an appointment for Friday and our pediatrician got us in pretty quickly. Instead of taking a minimal let's change one thing approach, he decided it was best for Madi to "throw us the book" and change all of the things. He noticed she had red skin which was indicative of a dairy sensitivity, so he suggested we eliminate dairy from my diet and switch her to a hypoallergenic, dairy free formula for fortification (extra calories). He also diagnosed her with colic, recommended colic drops, a probiotic, and gas drops in every bottle. He also increased her dosage of her acid reflux meds he had called in Tuesday. So then the waiting game began for her to feel better.
When we got home, I realized quickly the change to non-dairy everything helped her skin, but my stash of milk that I have worked so hard to get these past few months is all no good now. Sad face, but I can now bless the NICU babies with some milk and pay it forward to those mommies who helped me (but still, hard to let all of this go).
Saturday Madelynn seemed to be doing worse and worse. I hate not spending as much time with Brady and focusing all of my attention on her, so thankfully my mom let him stay the night with her so we could focus on Madi feeling a little less guilty. We ended up switching back to preemie nipples for her feedings to see if that helped, and it seemed to help significantly. Finally Madi was eating. Today, she can still use prayers, she is sometimes up to 60 ml (her absolute minimum required per feed) but others she gets barely 30 ml. I have a feeling that tomorrow we will be giving our good friend Dr. Straughn another visit...this girl doesn't have too much weight to lose without putting her health in jeopardy. We have a weekend trip planned for this coming weekend...if Madi isn't back to her normal self by tomorrow or Tuesday it looks like that trip may be postponed...keep her in your thoughts.
The health hiccup aside, I have really enjoyed spending some time with Madi and Brady at home. He loves helping his sister play, singing to her, showing her lots of cool things and teaching her magic tricks.
We've enjoyed playing legos, walks in the neighborhood to the park, feeding ducks, football Sundays, and family naps when we are lucky. I love this little family of mine, and am super thankful for each day I have with them.
Thursday, September 14, 2017
Thursday 9/14/2017 - Madelynn's Due Date!
Well, hello friends, family, friends of family, NICU friends, acquaintances, random strangers....today is a big day for the Pykas. We have finally reached Miss Madelynn's due date day!!!!
Wow, today is surprisingly filled with so many emotions. We are so grateful our Madi Grace has made it to her big day. When strangers walk up and ask me how old she is, I no longer have to say her adjusted age in gestational weeks, or joke that she's negative zero as they give me a look of shock when I say she's (insert number of actual) weeks old. I can finally read informational stuff on the google or from the doctor and say...oh this should happen in x amount of real weeks now...and not have to add nine. We MIGHT ACTUALLY BE six weeks or so away from an actual stretch of more than two and a half hours of sleep. We might actually be close to feeding her in a normal position, and closer to going out in public more comfortably. She no longer looks like a preemie. She looks like a beautiful newborn. WE HAVE MADE IT FRIENDS.
So, naturally, I did what any mom would do on this day...
I dressed her up in her original going home outfit and did a mini photoshoot, duh. Wouldn't every mom do that? Kidding aside, I wanted to see how she would look as if we were taking her home today. I had purchased her going home outfit months ago, one that is simple with a single "M" initial, a sweet hat with her full name on it, very similar to big brother's going home outfit except hers has sweet ruffles. It is still a little big, but that's ok...her brother's was too.
Isn't she beautiful in all her HEALTHY, cheeky, precious newborn-ish-ness? I thought so. She's growing well, up to about seven pounds now...per my rough calc on my own scale today. We will find out more next week at her next doctor's appointment.
In the past nine weeks we have gotten to know and love this precious girl. We have snuggled with, sang to, head-rubbed, and kissed this face countless times. We have prayed more than we ever have. We have learned more than I ever thought I would need to learn about a baby. We now know what each sound and squirm means. We have seen her master so many things that she previously struggled with. We are grateful for a happy, healthy, finally "newborn" baby.
Thank you so much for all of your prayers and well wishes that have gotten us to this point. Without you all, we wouldn't have made it this far. I appreciate and value so much every phone call, text, Facebook message and follow up. I have grown closer to so many people and have been in shock at the amount of love in the hearts of you all and baffled by the kindness of complete strangers. They say it takes a village, and that is completely accurate. A huge thank you to our parents for showing up without us needing to ask, literally all camping out at our house, assigning out responsibilities and days for care of Brady, driving me around when I couldn't, filling our refrigerator and freezer with food, handling everything so our transition would be seamless...we are so grateful for you. To our friends who have called, messaged, stopped by and checked on us and prayed for us...thank you. To the complete strangers who have changed my life with your kindness...thank you. I never imagined I could feel so loved and cared for. As I type this with tears in my eyes, I have to sit back and take a moment to pause. Your kindness, your love...the love from my tribe, my village...it has changed me. It has carried us. Because of you, we have made it to this big day. Thank you.
Wow, today is surprisingly filled with so many emotions. We are so grateful our Madi Grace has made it to her big day. When strangers walk up and ask me how old she is, I no longer have to say her adjusted age in gestational weeks, or joke that she's negative zero as they give me a look of shock when I say she's (insert number of actual) weeks old. I can finally read informational stuff on the google or from the doctor and say...oh this should happen in x amount of real weeks now...and not have to add nine. We MIGHT ACTUALLY BE six weeks or so away from an actual stretch of more than two and a half hours of sleep. We might actually be close to feeding her in a normal position, and closer to going out in public more comfortably. She no longer looks like a preemie. She looks like a beautiful newborn. WE HAVE MADE IT FRIENDS.
So, naturally, I did what any mom would do on this day...
I dressed her up in her original going home outfit and did a mini photoshoot, duh. Wouldn't every mom do that? Kidding aside, I wanted to see how she would look as if we were taking her home today. I had purchased her going home outfit months ago, one that is simple with a single "M" initial, a sweet hat with her full name on it, very similar to big brother's going home outfit except hers has sweet ruffles. It is still a little big, but that's ok...her brother's was too.
Isn't she beautiful in all her HEALTHY, cheeky, precious newborn-ish-ness? I thought so. She's growing well, up to about seven pounds now...per my rough calc on my own scale today. We will find out more next week at her next doctor's appointment.
In the past nine weeks we have gotten to know and love this precious girl. We have snuggled with, sang to, head-rubbed, and kissed this face countless times. We have prayed more than we ever have. We have learned more than I ever thought I would need to learn about a baby. We now know what each sound and squirm means. We have seen her master so many things that she previously struggled with. We are grateful for a happy, healthy, finally "newborn" baby.
Thank you so much for all of your prayers and well wishes that have gotten us to this point. Without you all, we wouldn't have made it this far. I appreciate and value so much every phone call, text, Facebook message and follow up. I have grown closer to so many people and have been in shock at the amount of love in the hearts of you all and baffled by the kindness of complete strangers. They say it takes a village, and that is completely accurate. A huge thank you to our parents for showing up without us needing to ask, literally all camping out at our house, assigning out responsibilities and days for care of Brady, driving me around when I couldn't, filling our refrigerator and freezer with food, handling everything so our transition would be seamless...we are so grateful for you. To our friends who have called, messaged, stopped by and checked on us and prayed for us...thank you. To the complete strangers who have changed my life with your kindness...thank you. I never imagined I could feel so loved and cared for. As I type this with tears in my eyes, I have to sit back and take a moment to pause. Your kindness, your love...the love from my tribe, my village...it has changed me. It has carried us. Because of you, we have made it to this big day. Thank you.
Tuesday, August 22, 2017
Tuesday 8/22
It's hard to believe that Pyka, Party of 4, is now in full swing in Wylie, Texas. It has officially been a week since we've been HOME with our lovie.
Of course this week has been a chaotic week (in true #pykalife fashion, you expect no less I'm sure). The day before we were able to take Madi home from the hospital I was convinced I had contracted the swine flu, ebola, or the plague...so before I went up to the hospital I made a stop at the handy dandy urgent care clinic so that she would also not get the ebola. The good news is they sent me home with some antibiotics and it was only Pharyngitis and we all lived to see today. The bad news is the day we came home with Madelynn, Mr. Brady got it too. Thankfully, the contagious period has lapsed and we are all a heavily medicated, plague-free family.
Before Madelynn was released, we were able to room in with her so we would have nurses on call in case anything horrible happened. It didn't (minus that no good horrible thing called first night parent freak-out insomnia, which realistically, is a week long parent freak-our insomnia). We took her home on Tuesday, after making what felt like a million required follow up doctor appointments.
Her first follow up was Friday and sister girl is up to five pounds! Since Jason was also out of town on business, I asked my Dad to take Madi and I just to get a second ear in case I missed something...oh and also so I could sit in the back seat and exclaim "She's red! Is she supposed to be red?!" while staring at her and poking her fifty times to check her breathing. Thankfully, we survived the car rides and we are all fairly good minus the new parent freak-out-itis.
Other than that, we are having fun adjusting to life at home, #pykalife style. My days have much less driving now, so I'm able to focus more on my girl....and pumping (barf). We feed her every three hours, so the routine is try to nurse for fifteen minutes, bottle feed with extra fortifier for thirty minutes, pump for twenty minutes, clean all parts, put everything away and get ready to repeat in two hours...and maybe get some sleep in between.
Brady is adjusting well so far, and has become the "Be Gentle! She's special!!!" police. Trust me kid, I'm being gentle with her...and no I wasn't hitting her and you don't have to call CPS or start throwing a fit because I am BURPING her (a foreign concept to a four year old overprotective new big brother who swears I was "hitting" her and needed to pat more gently). He also has new big brother freak-out-itis.
Jasper has also assumed the position of protector-in-charge. Either that or he's just wondering why the heck we've added yet another member to this family and why it's not all about him like the good ole days...
But other than that...I guess all is well with a few hiccups here and there (and a few scary choking episodes)...but we will get through it all. So thankful our NICU days are over and that we are snuggling and sleeping(ish) at home!
Here's a cute video...Madelynn grunted so Brady decided she was scared and she needed him to sing a song to him so he "wrote her one."
And here's more cute pictures...because, well, now we can...wire and tube free...and because she's cute.
Of course this week has been a chaotic week (in true #pykalife fashion, you expect no less I'm sure). The day before we were able to take Madi home from the hospital I was convinced I had contracted the swine flu, ebola, or the plague...so before I went up to the hospital I made a stop at the handy dandy urgent care clinic so that she would also not get the ebola. The good news is they sent me home with some antibiotics and it was only Pharyngitis and we all lived to see today. The bad news is the day we came home with Madelynn, Mr. Brady got it too. Thankfully, the contagious period has lapsed and we are all a heavily medicated, plague-free family.
Before Madelynn was released, we were able to room in with her so we would have nurses on call in case anything horrible happened. It didn't (minus that no good horrible thing called first night parent freak-out insomnia, which realistically, is a week long parent freak-our insomnia). We took her home on Tuesday, after making what felt like a million required follow up doctor appointments.
(Rooming in, aka getting no sleep)
Her first follow up was Friday and sister girl is up to five pounds! Since Jason was also out of town on business, I asked my Dad to take Madi and I just to get a second ear in case I missed something...oh and also so I could sit in the back seat and exclaim "She's red! Is she supposed to be red?!" while staring at her and poking her fifty times to check her breathing. Thankfully, we survived the car rides and we are all fairly good minus the new parent freak-out-itis.
(Ok, Ok, she had freak-out-itis a little too)
Other than that, we are having fun adjusting to life at home, #pykalife style. My days have much less driving now, so I'm able to focus more on my girl....and pumping (barf). We feed her every three hours, so the routine is try to nurse for fifteen minutes, bottle feed with extra fortifier for thirty minutes, pump for twenty minutes, clean all parts, put everything away and get ready to repeat in two hours...and maybe get some sleep in between.
Brady is adjusting well so far, and has become the "Be Gentle! She's special!!!" police. Trust me kid, I'm being gentle with her...and no I wasn't hitting her and you don't have to call CPS or start throwing a fit because I am BURPING her (a foreign concept to a four year old overprotective new big brother who swears I was "hitting" her and needed to pat more gently). He also has new big brother freak-out-itis.
Jasper has also assumed the position of protector-in-charge. Either that or he's just wondering why the heck we've added yet another member to this family and why it's not all about him like the good ole days...
But other than that...I guess all is well with a few hiccups here and there (and a few scary choking episodes)...but we will get through it all. So thankful our NICU days are over and that we are snuggling and sleeping(ish) at home!
Here's a cute video...Madelynn grunted so Brady decided she was scared and she needed him to sing a song to him so he "wrote her one."
And here's more cute pictures...because, well, now we can...wire and tube free...and because she's cute.
Thursday, August 17, 2017
Thursday 8/17 - Madi is Home!
Thank you...
I'm usually pretty decent with my words, but tonight I'm struggling coming up with anything that is remotely adequate to express my feelings...feelings of gratitude, overwhelming relief, and appreciation. In the past month, I've met strangers who have completely changed my life. I have become close with people I've never met and never intended on meeting. I've learned so much from all of you.
Thank you...
I'm usually pretty decent with my words, but tonight I'm struggling coming up with anything that is remotely adequate to express my feelings...feelings of gratitude, overwhelming relief, and appreciation. In the past month, I've met strangers who have completely changed my life. I have become close with people I've never met and never intended on meeting. I've learned so much from all of you.
Thank you...
- Dr. Trylovich - for seeing that my baby needed saving, for saving her, for calming me in a crazy storm, for knowing exactly what you needed to know even though you had never met me
- To the hospital staff at Plano Presby, for your patience with my daily calls, questions, need for help, you were all so polite and helpful.
- For milk donors who so generously gave to the hospital NICU for my girl so she could eat until my milk came in
- For those who saved my baby and took care of her more than I could...I had no idea how much nurses do and now have a deep connection and appreciation for all of you
- Shelby - for immediately coming to my side and encouraging me. For telling me my baby would be so much better soon. For taking care of her in the early days, calling her "sister." You were the person who told me I could hold her for the first time and comforted me when I had tears streaming down my face.
- Faye - for teaching Jason and I the three "P's" that were necessary to overcome our journey...prayer, positivity, and perseverance. You live by that motto, and even though you broke the freezer door the night you gave us the NICU tour, you laughed, stayed positive, and persevered through teaching us the basics of taking care of our fragile baby.
- Kim - for keeping us smirking with your sense of humor. You can really tell that you love your job and your babies. I will always refer to my purple shirts as eggplant because of you, and I will always remember you joking about your babies trying to play oxygen roulette to see which one was the favorite. By the way, you were ours.
- Anne - for nicknaming Madi "Boo Boo Poo Poo" and being so gentle with her and me. I imagine your kiddos and grandkiddos are very lucky to have you.
- Nancy - for showing me how to kangaroo my baby for the first time and being patient with me. I appreciated your direct approach and no nonsense way of communicating.
- Olga, Ally, Annabel - for caring for Madi during the night when I was unable to. For dressing her in the cutest outfits and creating such sweet keepsakes for us to take home.
- Lolita - for telling me my baby was "stable" for the first time and letting me know she wasn't a "sick baby." For saying she was feisty and would be stronger than I expected.
- Neitra - for being so helpful toward the end and really showing us tips and tricks of burping Madi, how to transition her, what to do when she choked and turned blue on me, and amazingly not panicking through any of the chaos.
- Kayla - for teaching us how to mix in her additional calories into her milk, how to give her vitamins, and sharing your stories of your two kiddos at home.
- Paula - for helping us bathe Madi for the first time and for all your tips and tricks as well on burping, feeding, and our transition home.
- Jiyoun - I can't really express my gratefulness for you completely with words. You were with Madi when she completed all of her bottles for the first time. You were there the last day when I was scared that she couldn't take the bottle right before we walked out. You checked on us when we roomed in. You cared for her the way you would care for your children and you explained your deep connection to your babies. Thank you for sharing your journey through your chemo treatments and your brain tumor journey. You changed us, and we are lucky to have had you care for our daughter, all the way to walking us to our car. I pray your remaining chemo treatments go well.
Because of all of you, my Madi Grace is not only alive, she has now learned how to breathe, maintain her temperature, and eat on her own. THANK YOU. Because of you, she is now HOME at 35 weeks gestation. Because of you, our lives are forever changed, and we have a new sense of gratitude and awareness for everything you do, daily, for simple strangers like us. We will never forget you.
Sunday, August 13, 2017
Sunday 8/13
What a rollercoaster of a week. It has truly been a hurry up and wait kind of week, and our patience has continuously been tested. Ever since the doctors told us there was a possibility of Madelynn coming home, we have been so excited, followed by let down.
Those of you that know me well know I connect with music. It's like my therapy. I'm the girl that has a stressful day, warms up a bubble bath and turns up my sad song list to feel at peace again. Well, there have been so many songs that have run through my head, but the song that has been in my head this past week has been Hills and Valleys by Tauren Wells:
Those of you that know me well know I connect with music. It's like my therapy. I'm the girl that has a stressful day, warms up a bubble bath and turns up my sad song list to feel at peace again. Well, there have been so many songs that have run through my head, but the song that has been in my head this past week has been Hills and Valleys by Tauren Wells:
I've walked among the shadows
You wiped my tears away
And I've felt the pain of heartbreak
And I've seen the brighter days
And I've prayed prayers to heaven from my lowest place
And I have held the blessings
God, you give and take away
You wiped my tears away
And I've felt the pain of heartbreak
And I've seen the brighter days
And I've prayed prayers to heaven from my lowest place
And I have held the blessings
God, you give and take away
No matter what I have, Your grace is enough
No matter where I am, I'm standing in Your love
No matter where I am, I'm standing in Your love
On the mountains, I will bow my life
To the one who set me there
In the valley, I will lift my eyes to the one who sees me there
When I'm standing on the mountain top, didn't get there on my own
When I'm walking through the valley, no I am not alone
You're God of the hills and valleys
Hills and Valleys
God of the hills and valleys
And I am not alone
To the one who set me there
In the valley, I will lift my eyes to the one who sees me there
When I'm standing on the mountain top, didn't get there on my own
When I'm walking through the valley, no I am not alone
You're God of the hills and valleys
Hills and Valleys
God of the hills and valleys
And I am not alone
We really do have to learn to trust God throughout this whole process...through all of the ups and downs. I've gotten so frustrated when I couldn't get her to drink the last drops of her bottle and we've had to start over again with the counting. Jason and I both KNEW she could do it on her own, I would just get frustrated if I felt like part of that was my error in giving her the bottle (I mean seriously, how do you hold a bottle sideways and get those last drops into the nipple of the bottle? Impossible).
After a couple days of being anal and calling or asking after EVERY FEED, a new song is in my head...Coming Home by Skylar Grey (and let's be real, the remix with P Diddy is better...I never said I was perfect lol):
I'm coming home, I'm coming home
Tell the world I'm coming home
Let the rain wash away
All the pain of yesterday
I know my kingdom awaits...
Tell the world I'm coming home
Let the rain wash away
All the pain of yesterday
I know my kingdom awaits...
Madelynn finally completed eight bottles in a row yesterday. As of this morning, they have taken her feeding tube out and set her potential discharge date for the 15th (one day before her "month" birthday)!!!! She still has to complete the next eight bottles without problem (well, at this point, now five) and then we can take her HOME. There's more fun that starts once she gets here, but she can finally be home. I can finally feel like I will be a 100% mom instead of a 50% mom. I can be the one taking care of my babies...both of them. We can eat dinner as a family. I can hold her for more than once every three hours for a "touch time." We CAN....NOT...WAIT.
(Raise your hand if you are tube free)
Lift some prayers up for our family that everything continues to go smoothly so we can take our girl home. She's passed the hour and a half car seat test with no alarms going off, and we room in with her at the hospital tomorrow night if all goes well. We are so close we can taste it...and I'm pretty sure we've never felt so happy, nervous, and excited all at the same time. Jason keeps saying "I don't know what to feel yet." And that is exactly true...please pray our excitement is real this time.
(NBD...just rocking that car seat test)
(Over this already...can we go home yet?)
Thursday, August 10, 2017
Thursday 8/10
Today marks twenty five days in the NICU. Twenty five days of our family being separated. Twenty five days of three hours driving, six hours at the hospital, four hours pumping, and still no baby at home. Twenty five days of emotionally and physically exhausted...and she is still not coming home.
It's frustrating. Every nurse keeps saying to get ready at home because we are so close. The nurse practitioner saw her last Saturday and said "I'm thinking 7-10 days" and on Monday changed her mind and said "I know I said 7-10, but it's likely going to be closer to 3-5." It's not. The more they keep saying she's close, the more excited we get. We've prepared the house, all of her things are ready...and she is still not coming home.
"You are asking her to do something that she is not supposed to be doing yet," the nurse reminded me tonight after she only took half of a bottle and had to be gavage fed the rest. I still don't understand. She has to take 8 full bottles within 24 hours for two days to go home. Yesterday, she took 7 and 3/4. You read that correctly, 7 and 3/4. Since the 3/4 isn't a whole, the 24 hours starts over again. And I guess I'm glad it did, because today, she only took 2 bottles. "It's like you've never been asked to run before, and you've just run a marathon...you would be tired too. And it's ok...she's just being a preemie." The nurses are so encouraging and helpful, but I'm drained.
I really wanted her home by her first month milestone, for completely selfish reasons. I have the cute stickers to attach to her onesie to take the cute photos to document her each month over a year. We are getting dangerously close to that mark, and I'm just not sure it's going to happen.
She was doing so well, she was our rockstar baby. She still is a rockstar, it's just another reality check I guess. Two steps forward, one step back...
It's frustrating. Every nurse keeps saying to get ready at home because we are so close. The nurse practitioner saw her last Saturday and said "I'm thinking 7-10 days" and on Monday changed her mind and said "I know I said 7-10, but it's likely going to be closer to 3-5." It's not. The more they keep saying she's close, the more excited we get. We've prepared the house, all of her things are ready...and she is still not coming home.
"You are asking her to do something that she is not supposed to be doing yet," the nurse reminded me tonight after she only took half of a bottle and had to be gavage fed the rest. I still don't understand. She has to take 8 full bottles within 24 hours for two days to go home. Yesterday, she took 7 and 3/4. You read that correctly, 7 and 3/4. Since the 3/4 isn't a whole, the 24 hours starts over again. And I guess I'm glad it did, because today, she only took 2 bottles. "It's like you've never been asked to run before, and you've just run a marathon...you would be tired too. And it's ok...she's just being a preemie." The nurses are so encouraging and helpful, but I'm drained.
I really wanted her home by her first month milestone, for completely selfish reasons. I have the cute stickers to attach to her onesie to take the cute photos to document her each month over a year. We are getting dangerously close to that mark, and I'm just not sure it's going to happen.
She was doing so well, she was our rockstar baby. She still is a rockstar, it's just another reality check I guess. Two steps forward, one step back...
Tuesday, August 8, 2017
Tuesday 8/8
In the Bible, Peter references that to the Lord a day is like a thousand years and a thousand years is like a day (2 Peter 3:8). Today, it kind of felt like that in the NICU. I feel like in a NICU day, it can feel like a thousand years, but then a thousand things can happen in one day.
The day started out like any of our "normal" days in NICU. Arrive, get a locker, grab a drink, grab some bottles, go to the pumping room, check in bottles, meet Jason in the lobby, go back to scrub in, put soap on my hands...and then the normal stopped. As we were scrubbing in, an alarm started sounding...loudly. I glanced over and noticed a blinking light above Pod F. Then a nurse ran by. I'm not talking a brisk walk, I'm talking Olympic sprinted to the pod. Time started moving slower. Another nurse ran by, then another. I counted at least ten nurses running and time seemed to stand still. There was another couple waiting on Jason and I to scrub in next, and I glanced at the other mom. We both had tears in our eyes as Jason said "That is scary." We knew that alarm wasn't good, and someone's life was likely about to change for the worse.
It's like that, some days in the NICU. A brutal reminder of how fragile life can be. Some days you overhear parents talking about calls they get that aren't good and how their babies aren't stable. Some days you overhear calls urging parents to get to the hospital quickly because their baby has taken a turn for the worse and the end is near. Some days you overhear parents saying their child was given their last rights. And some days, like today, you hear alarms.
We knew it was not Madi, but it still causes you to stop, gulp, and pick your stomach up off the floor. Many use the term "blessed" when they talk about Madi or other babies..."you guys are just blessed with Madi," etc. It bothers me when people say that because I don't think she's any more blessed than other babies. Fortunate, maybe, but that baby who's heart stopped today...she wasn't "not blessed." Her parents weren't "not blessed." God didn't dislike them or favor one more than the other. I struggle when people use that term. I struggle to understand why people would think that way. I struggle and wonder why some parents get the short end of the stick, why they are the ones who deal with the worst news possible. But anyway, that was the start of our day. And I still can't get that baby in Pod F off my mind. That was Madi's pod until a few days ago.
Madi did have a lot of positive things happen today. Jason and I were able to give her her first swaddle bath. I had to run to the store in between visits yesterday to get the correct type of tub because the one we had was not approved by the hospital. She loved her bath, and loved getting lotion put on afterward.
After her bath, they wanted me to bottle feed instead of nurse (read attempt still), so I did that and she completed the bottle like a champ. She actually completed all four day shift bottles, which is fantastic news and means she will likely be going home soon. I had a bit of a scare when I was kangarooing her after her bottle though. The best way I can describe it is as I was holding her she just...paused. Her alarm started going off and "Brady" was flashing across the screen. I panicked and the nurse ran in and asked "Did you move her? What happened?" All I could explain was that she paused. It's like she took a breath....and then literally just...paused. She held it, her face turned red, and the alarm went off. Her heart rate dipped below 100, and it is usually in the 150-190 range. It scared me. They keep saying how she is supposed to be ready to go home soon. A baby isn't considered stable if they have a bradycardia episode and has to be brady free for five days before going home. The nurse looked at the time, and because it didn't last long enough (it has to last more than 20 seconds), it wasn't considered a true bradycardia and would not go against her in terms of discharge. But it scared me. How am I supposed to take this baby home when there are still scary things that can happen? How will I know when she is "pausing" or when it's more serious? Will my stomach keep dropping every time something like this happens? It was just...scary.
On a positive note, she finished all four bottles during the day shift. She has to finish eight bottles per day for two days to be able to go home. They keep saying we are close. She also took and passed her hearing screen today. She was given her hepatitis B shot yesterday, and was switched to a vitamin and milk fortifier today that we will be able to take home with us once we are discharged. We were taught how to mix everything, and some tips to make sure we are doing proper techniques with everything. We brought up her bath and her car seat for the car seat test that will likely be coming in the next few days.
We are getting so close to going home...but a thousand years still feels like a day and a day feels like a thousand years in the NICU. I just want to make sure my baby stays healthy, and for now she's in the perfect place should anything crazy happen.
The day started out like any of our "normal" days in NICU. Arrive, get a locker, grab a drink, grab some bottles, go to the pumping room, check in bottles, meet Jason in the lobby, go back to scrub in, put soap on my hands...and then the normal stopped. As we were scrubbing in, an alarm started sounding...loudly. I glanced over and noticed a blinking light above Pod F. Then a nurse ran by. I'm not talking a brisk walk, I'm talking Olympic sprinted to the pod. Time started moving slower. Another nurse ran by, then another. I counted at least ten nurses running and time seemed to stand still. There was another couple waiting on Jason and I to scrub in next, and I glanced at the other mom. We both had tears in our eyes as Jason said "That is scary." We knew that alarm wasn't good, and someone's life was likely about to change for the worse.
It's like that, some days in the NICU. A brutal reminder of how fragile life can be. Some days you overhear parents talking about calls they get that aren't good and how their babies aren't stable. Some days you overhear calls urging parents to get to the hospital quickly because their baby has taken a turn for the worse and the end is near. Some days you overhear parents saying their child was given their last rights. And some days, like today, you hear alarms.
We knew it was not Madi, but it still causes you to stop, gulp, and pick your stomach up off the floor. Many use the term "blessed" when they talk about Madi or other babies..."you guys are just blessed with Madi," etc. It bothers me when people say that because I don't think she's any more blessed than other babies. Fortunate, maybe, but that baby who's heart stopped today...she wasn't "not blessed." Her parents weren't "not blessed." God didn't dislike them or favor one more than the other. I struggle when people use that term. I struggle to understand why people would think that way. I struggle and wonder why some parents get the short end of the stick, why they are the ones who deal with the worst news possible. But anyway, that was the start of our day. And I still can't get that baby in Pod F off my mind. That was Madi's pod until a few days ago.
Madi did have a lot of positive things happen today. Jason and I were able to give her her first swaddle bath. I had to run to the store in between visits yesterday to get the correct type of tub because the one we had was not approved by the hospital. She loved her bath, and loved getting lotion put on afterward.
After her bath, they wanted me to bottle feed instead of nurse (read attempt still), so I did that and she completed the bottle like a champ. She actually completed all four day shift bottles, which is fantastic news and means she will likely be going home soon. I had a bit of a scare when I was kangarooing her after her bottle though. The best way I can describe it is as I was holding her she just...paused. Her alarm started going off and "Brady" was flashing across the screen. I panicked and the nurse ran in and asked "Did you move her? What happened?" All I could explain was that she paused. It's like she took a breath....and then literally just...paused. She held it, her face turned red, and the alarm went off. Her heart rate dipped below 100, and it is usually in the 150-190 range. It scared me. They keep saying how she is supposed to be ready to go home soon. A baby isn't considered stable if they have a bradycardia episode and has to be brady free for five days before going home. The nurse looked at the time, and because it didn't last long enough (it has to last more than 20 seconds), it wasn't considered a true bradycardia and would not go against her in terms of discharge. But it scared me. How am I supposed to take this baby home when there are still scary things that can happen? How will I know when she is "pausing" or when it's more serious? Will my stomach keep dropping every time something like this happens? It was just...scary.
On a positive note, she finished all four bottles during the day shift. She has to finish eight bottles per day for two days to be able to go home. They keep saying we are close. She also took and passed her hearing screen today. She was given her hepatitis B shot yesterday, and was switched to a vitamin and milk fortifier today that we will be able to take home with us once we are discharged. We were taught how to mix everything, and some tips to make sure we are doing proper techniques with everything. We brought up her bath and her car seat for the car seat test that will likely be coming in the next few days.
We are getting so close to going home...but a thousand years still feels like a day and a day feels like a thousand years in the NICU. I just want to make sure my baby stays healthy, and for now she's in the perfect place should anything crazy happen.
Sunday, August 6, 2017
Sunday 8/6
As this weekend winds down, I thought it might be time for another quick update on our Madi.
Our girl is making so much progress and we are incredibly thankful. There are three major milestones she must accomplish prior to graduating from the NICU as well as a list of ten or so tasks she/we must complete together. The three milestones are breathing on her own, regulating her own temperature, and eating 8 bottles/day. The list of tasks looks like this:
This week, we completed our NICU care and CPR class as well as got a few things in order that were recommended there. We now have an emergency station set up in our house, including a landline, should something ever happen. After hearing a few stories from class, the last thing we would want to do in the event of an emergency is be scrambling to find our cell phones or be worried that they weren't fully charged, so we went ahead and bought an old fashioned phone that plugs into the wall and set that up with our emergency station. We also put together a few finishing touches on her nursery and got some diapering essentials organized.
Yesterday was a huge day for Madelynn. She hit 1800 grams and was moved to an open crib one day early and got her pulse oxygen monitor completely taken off. She has been maintaining her temperature with no issues since then, so we can hopefully check two of the three major milestones off the list. She has also been attempting to take bottles almost every care time (every three hours). As of today, she is completing about two bottles per shift, or four bottles per day, and drinking some of the others...just not fully completing. This is great news, so great that the nurse practitioner has warned me it may be as early as 7-10 days for her to come home! That is of course if everything goes well and her endurance improves steadily this week...and if she passes remaining tests. We have a few more tasks left to complete on the checklist, so I am frantically trying to get all the things I need in order to get those done. (Side note...she is still not nursing, still working on that one...ugh).
Today, Madi is officially four pounds! It's crazy to think she has gained a pound since birth, and equally crazy to think she might be going home pretty small. I have a feeling we won't be traveling much because I'm going to be so paranoid with her in the car seat once we actually do get discharged. But we shall see, trying not to jump the gun or get too excited, but goodness gracious it would be wonderful for her to be home and not having to travel back and forth every day.
All in all it was a good week for her. I can not wait to have my girl home, to have our family all in one place, and to worry more about snuggles and loves than monitors and numbers and statistics.
Our girl is making so much progress and we are incredibly thankful. There are three major milestones she must accomplish prior to graduating from the NICU as well as a list of ten or so tasks she/we must complete together. The three milestones are breathing on her own, regulating her own temperature, and eating 8 bottles/day. The list of tasks looks like this:
This week, we completed our NICU care and CPR class as well as got a few things in order that were recommended there. We now have an emergency station set up in our house, including a landline, should something ever happen. After hearing a few stories from class, the last thing we would want to do in the event of an emergency is be scrambling to find our cell phones or be worried that they weren't fully charged, so we went ahead and bought an old fashioned phone that plugs into the wall and set that up with our emergency station. We also put together a few finishing touches on her nursery and got some diapering essentials organized.
Yesterday was a huge day for Madelynn. She hit 1800 grams and was moved to an open crib one day early and got her pulse oxygen monitor completely taken off. She has been maintaining her temperature with no issues since then, so we can hopefully check two of the three major milestones off the list. She has also been attempting to take bottles almost every care time (every three hours). As of today, she is completing about two bottles per shift, or four bottles per day, and drinking some of the others...just not fully completing. This is great news, so great that the nurse practitioner has warned me it may be as early as 7-10 days for her to come home! That is of course if everything goes well and her endurance improves steadily this week...and if she passes remaining tests. We have a few more tasks left to complete on the checklist, so I am frantically trying to get all the things I need in order to get those done. (Side note...she is still not nursing, still working on that one...ugh).
(snoozing away in her new open crib/bassinet)
Today, Madi is officially four pounds! It's crazy to think she has gained a pound since birth, and equally crazy to think she might be going home pretty small. I have a feeling we won't be traveling much because I'm going to be so paranoid with her in the car seat once we actually do get discharged. But we shall see, trying not to jump the gun or get too excited, but goodness gracious it would be wonderful for her to be home and not having to travel back and forth every day.
(Eek! Four pounds!)
All in all it was a good week for her. I can not wait to have my girl home, to have our family all in one place, and to worry more about snuggles and loves than monitors and numbers and statistics.
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