The classes went well...it ended up that we were the only people there so it was nice not to talk about how to change a diaper and instead talked about how to safely deal with reflux (she's on pepcid for that), going home with monitors, how to be mean to visitors who just want to see the baby they have been praying for for months, when to call the dr (way more often than with a healthy baby, that's for sure) and signs that your baby just needs a break...these babies get really overwhelmed by things that would normally soothe you and I. Oh, and M telling the instructor what to tell people about their car seats. :)
Since Em has central apnea, she is back on caffeine (to stimulate her breathing) and she will be on it for a long time...some kids take years and others never get off it. It also means she will come home on an apnea monitor (and her oxygen). In the NICU, we call all the tubes 'spaghetti'. Sadly, we will be bringing some spaghetti home with us. No big deal, we're used to it, it just complicates things as I anticipate the first time K grabs one of the tubes...poor child, that is going to be one lesson she won't forget. I really wish I could just tell her and have her understand! Oh, and choose to obey. :)
Well the rest of us are okay...I am swearing off fast food for the rest of my life (yeah right)...I ate out while at the hospital yesterday and have been sick all day today. My stomach is killing me and it's hard to pump when you can't drink water. Before that, I was great!
This was also the first day we completely cut dairy from K's diet (attempting to alleviate constipation she has been having for a while) and she has gone number two 6times today. All but the last one were very painful so I spent the day holding her and promising it would get better soon. Otherwise, she is super cute and very fun to have around...she wanted to go outside today so I opened the door so she would feel the cold and rain and want to stay in and she looked at me like 'yeah, so what?' and tried to walk outside. :)
M wants you all to know that he LOVES working in the rain. It's raining cats and dogs and he just took a fatal crash cause someone thought it was a good idea to drive 80mph in the rain. This after he stopped someone going 90. Have a great day!
The life and adventures of two former MK's...and their new additions. Our first daughter was born full-term on Jan 19, 2009 and 10 short months later, our micro-preemie was born Nov 6, 2009 at 24w3d and 1 pound 6 ounces. Read her story and our journey below.
Saturday, February 27, 2010
Thursday, February 25, 2010
Eyes, Classes and the Like
Emily's eye dr today left the comment, "Looks Great" on my baby's chart. He is sure she will have central vision and the extent of peripheral vision will be determined when she is three or four years old. Yipee!! I might sound neutral in that statement, but he called me when I was out on my walk and I just started crying and thanking the Lord over and over and over and over...I never realized what a heavy burden that was on me until it was lifted...I also have a greater appreciation for the Psalms when the author just gushes about the greatness of God...I must have sounded like a crazy person. I can't believe what a great miracle/gift this is for her and us!!
I almost forgot...on her due date, she was 5 pounds, 9 ounces and 17.5 inches long.
All I know about her sleep study is that the results say she has "central apnea". Defined by google: temporary cessation (stopping) of breathing due to a problem related to the central nervous system (brain). I will speak to the dr tomorrow and let you know what that means for her health and bringing her home.
We also have our first discharge class tomorrow. It doesn't mean that she is coming home, but at least it is on the horizon enough that they think they should train us on how to care for her. There are a LOT of things we have to do before we can take her home...everything from the shaken baby video to CPR certification. I could use some prayer so I will just roll with the punches...these things frustrate me to no end. They sound like the typical 'hoops' you have to jump through for our government...most of the time you are treated like an idiot and it turns out to be a waste of time. The stuff we really need (like how to run her breathing equipment and how to organize visits to which drs) will be crammed in to one day...the same day we bring her home. Classic.
Well, she ate two full feeds today and 2/3 of the rest of them. She is doing so well eating! When I say this is a miracle, that is because the occupational therapist says that most babies who have been intebated for that long don't want anything near their mouth, much less have an interest in sucking. She gets angry if the nurse takes to long getting hers ready! That's my girl!
I almost forgot...on her due date, she was 5 pounds, 9 ounces and 17.5 inches long.
All I know about her sleep study is that the results say she has "central apnea". Defined by google: temporary cessation (stopping) of breathing due to a problem related to the central nervous system (brain). I will speak to the dr tomorrow and let you know what that means for her health and bringing her home.
We also have our first discharge class tomorrow. It doesn't mean that she is coming home, but at least it is on the horizon enough that they think they should train us on how to care for her. There are a LOT of things we have to do before we can take her home...everything from the shaken baby video to CPR certification. I could use some prayer so I will just roll with the punches...these things frustrate me to no end. They sound like the typical 'hoops' you have to jump through for our government...most of the time you are treated like an idiot and it turns out to be a waste of time. The stuff we really need (like how to run her breathing equipment and how to organize visits to which drs) will be crammed in to one day...the same day we bring her home. Classic.
Well, she ate two full feeds today and 2/3 of the rest of them. She is doing so well eating! When I say this is a miracle, that is because the occupational therapist says that most babies who have been intebated for that long don't want anything near their mouth, much less have an interest in sucking. She gets angry if the nurse takes to long getting hers ready! That's my girl!
Tuesday, February 23, 2010
ZERO!!!
Our little girl turned zero today! What does that mean? It means she made it to her birth date and now, not only is she supposed to develop her brain, lungs, eyes, intestines and other body parts, she is supposed to start developing skills and acting like a baby. That’s no small task for such a little thing!
The drs have two different ages for her:
CA (chronological age): her actual age according to the calendar…easy enough…she was born on Nov. 6, so that makes her a little over 15 weeks old.
GA (gestational age): her age according to her original birth date (today). This is used to determine where she should be developmentally and what type of behavioral patterns we should expect.
So what does THAT mean? Well, when drs or therapists assess Emily, they will use her GA to determine how she is doing. For example, if a full-term baby should be sitting on its own at 6 months, they will expect Em to sit on her own six months from NOW (when she is 10 months old). They will use her GA for about two years of her life…until her gross motor skills (sit, crawl, walk) have caught up. Then they will switch to her CA for the rest of her life. IF there aren’t any learning disabilities or other brain development issues, they hope to have her all the way caught up by second or third grade.
Realistically for her, they have told us that we can expect her to be behind even the adjusted age for quite a while. If you think about it, it makes sense…if she were born today, she would be able to breathe, suck and swallow all at the same time and she would be able to nipple all her feeds…she can’t even poop and breathe at the same time. :) Aww, that’s our little girl!
So, in honor of the little girl that has defied all the odds, I read the blog last night and wrote down all she has overcome already…her we go:
- Pneumonia in both lungs
- PDA (heart) surgery
- Two broken arms
- Three intestinal infections
- Weeks of acidosis (blood problems/infections)
- 6 weeks intebated
- ROP in her eyes leading to near retinal detachment
- A trip to Pasadena for 10 days
- Two laser eye surgeries
- Two experimental eye procedures
- NPO (stopped eating) four times – which means starting over eating four times
- General anesthesia twice
- Countless blood transfusions
And let’s not forget,
-Breathing…despite having chronic lung disease (BPD) and only partially functioning lungs
-Countless pokes, prods, IVs, and antibiotics
-Being isolated – not held – for the first 7 weeks and 2 days of her life
Also, as I read through the blog, I realized there were a couple of things we needed to mention in praise to God for his answers to prayer…I’m not going to mention the obvious…that our little girl is here and ALIVE…She has overcome all of the above…and WE have lived through them too . Or that He has kept our house, our cars, and everything else around us functioning and free of problems…
I’m talking about blog posts of specific prayer requests that never got updated.
-Remember when my milk was getting lower and I asked you to pray that it would increase and we would have a “serious storage problem”? I almost laughed when I read that! We have a 7 cubic foot freezer full of nothing but milk AND if we don’t find another one on craigslist, we are going have to take a box down to my aunt and uncle’s place by next week. Right now, my milk supply is increasing; not decreasing…that is why we continue to get ahead of her.
-Every time we got sick, ummm, well, we got better. We have been healthy for almost a month now and it should be summer soon so I am hoping we have turned the corner on that one. Ironically, ever since that first bad cold, K has been the healthiest one of all of us…it seems like she has teeth coming in all the time but other than that, she’s a happy little girl with LOTS of energy and a need to climb up slides backwards. :) That’s my girl!
Thank you for your prayers and support! Specific prayer requests now are that she will learn to eat and breathe independently, that she will begin to put on weight again (still 5 pounds, eight or nine ounces), and that she will not have bad reflux in response to the HMF (additions to her milk - necessary to add calories without adding volume).
Also, tonight, she has her sleep study…they will monitor her heart and breathing all night long. I don’t want to pray for specific good results, but that the results will be an ACCURATE look at her status right now. God Bless!
The drs have two different ages for her:
CA (chronological age): her actual age according to the calendar…easy enough…she was born on Nov. 6, so that makes her a little over 15 weeks old.
GA (gestational age): her age according to her original birth date (today). This is used to determine where she should be developmentally and what type of behavioral patterns we should expect.
So what does THAT mean? Well, when drs or therapists assess Emily, they will use her GA to determine how she is doing. For example, if a full-term baby should be sitting on its own at 6 months, they will expect Em to sit on her own six months from NOW (when she is 10 months old). They will use her GA for about two years of her life…until her gross motor skills (sit, crawl, walk) have caught up. Then they will switch to her CA for the rest of her life. IF there aren’t any learning disabilities or other brain development issues, they hope to have her all the way caught up by second or third grade.
Realistically for her, they have told us that we can expect her to be behind even the adjusted age for quite a while. If you think about it, it makes sense…if she were born today, she would be able to breathe, suck and swallow all at the same time and she would be able to nipple all her feeds…she can’t even poop and breathe at the same time. :) Aww, that’s our little girl!
So, in honor of the little girl that has defied all the odds, I read the blog last night and wrote down all she has overcome already…her we go:
- Pneumonia in both lungs
- PDA (heart) surgery
- Two broken arms
- Three intestinal infections
- Weeks of acidosis (blood problems/infections)
- 6 weeks intebated
- ROP in her eyes leading to near retinal detachment
- A trip to Pasadena for 10 days
- Two laser eye surgeries
- Two experimental eye procedures
- NPO (stopped eating) four times – which means starting over eating four times
- General anesthesia twice
- Countless blood transfusions
And let’s not forget,
-Breathing…despite having chronic lung disease (BPD) and only partially functioning lungs
-Countless pokes, prods, IVs, and antibiotics
-Being isolated – not held – for the first 7 weeks and 2 days of her life
Also, as I read through the blog, I realized there were a couple of things we needed to mention in praise to God for his answers to prayer…I’m not going to mention the obvious…that our little girl is here and ALIVE…She has overcome all of the above…and WE have lived through them too . Or that He has kept our house, our cars, and everything else around us functioning and free of problems…
I’m talking about blog posts of specific prayer requests that never got updated.
-Remember when my milk was getting lower and I asked you to pray that it would increase and we would have a “serious storage problem”? I almost laughed when I read that! We have a 7 cubic foot freezer full of nothing but milk AND if we don’t find another one on craigslist, we are going have to take a box down to my aunt and uncle’s place by next week. Right now, my milk supply is increasing; not decreasing…that is why we continue to get ahead of her.
-Every time we got sick, ummm, well, we got better. We have been healthy for almost a month now and it should be summer soon so I am hoping we have turned the corner on that one. Ironically, ever since that first bad cold, K has been the healthiest one of all of us…it seems like she has teeth coming in all the time but other than that, she’s a happy little girl with LOTS of energy and a need to climb up slides backwards. :) That’s my girl!
Thank you for your prayers and support! Specific prayer requests now are that she will learn to eat and breathe independently, that she will begin to put on weight again (still 5 pounds, eight or nine ounces), and that she will not have bad reflux in response to the HMF (additions to her milk - necessary to add calories without adding volume).
Also, tonight, she has her sleep study…they will monitor her heart and breathing all night long. I don’t want to pray for specific good results, but that the results will be an ACCURATE look at her status right now. God Bless!
Monday, February 22, 2010
Sunday, February 21, 2010
Family
Ok, I think this might be my favorite pic...can't really see toaster head and the eyes are not bugged out, oh, and clothes!
IDK, the pic is lined up right on my computer...just turn your head sideways. :)
Just getting the size of her hand again. She is the same except not eating all her feedings anymore (to be expected)...she is just too immature to have the strength and coordination to eat everything.
Grandma's sister and husband came to visit so we had a good evening catching up...of course, finding someone who will push her around for more than 10 seconds is always a blast!
Is this how all pics with kids come out? Why can't you convince the adults to look at the camera instead of the kids?
Going for a walk with her cousin...cousin number six coming in May. Can't wait!
IDK, the pic is lined up right on my computer...just turn your head sideways. :)
Just getting the size of her hand again. She is the same except not eating all her feedings anymore (to be expected)...she is just too immature to have the strength and coordination to eat everything.
Grandma's sister and husband came to visit so we had a good evening catching up...of course, finding someone who will push her around for more than 10 seconds is always a blast!
Is this how all pics with kids come out? Why can't you convince the adults to look at the camera instead of the kids?
Going for a walk with her cousin...cousin number six coming in May. Can't wait!
Subscribe to:
Posts (Atom)