March of Dimes

SHARE HOME > SHARE YOUR STORY > ALL SHORT STORIES > BLOGS

OUR ROCKSTAR RAEGAN

Raegansmommy

September 2010

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

LOVIN LIFE

Aug 06, 2009 10:41pm (EST)

I'm gonna try to keep this short, as I tend to tire out thinking of my words (and Lord knows I use a LOT of 'em). So Raegan is doing just fabulous and I feel so extremely blessed to be able to stay home with her everyday, all day and be her primary caretaker. I know that many moms have to work everyday, there will be a time when I have to get a job again, but I know it is best for my baby to be able to stay home with her, keep her away from the germs of a daycare. When I worked I daydreamed about being able to be a stay at home mom, thought it would not in a million years be possible, how ironic that it's kind of necessary after having a micro-preemie. No, my fiance and I are not "well off", we have no one helping us out financially, we are just getting by with only him working...it is all worth it to be able to be with her though. We were looking at houses before I found out I was pregnant, then decided that it just wasn't something we could afford with a baby on the way, so we continue to rent and that is just fine with me...this little child holds so much of my happiness, as long as she's happy and healthy, so am I!

Raegan IS so happy, and healthy even though she had that brief "cold". It only lasted for 2 days, thank God! She's had a GI appointment since then, all was well in that department, they are keeping her on the Prilosec and will see her in 6 months (can't believe she'll be a year old then!). It was kind of crazy to have to drive the hour into Boston for a very brief appointment where she was barely even examined. However, I found out after we experienced a 45 minute wait in an examining room at the pedi office yesterday for a 5 minute follow up visit that I should probably get used to these things. Good thing the pedi's office is only 10 minutes away and we didn't have to wait in the waiting room that whole time!

Raegan's at 10lb 3oz, which is good, she's still gaining. I was kind of surprised because I have been concerned with her taking only 10-16oz everyday, and as long as she's gaining than she's fine! Her pedi didn't understand why GI was going to keep her on the Prilosec (wow, seriously?!), but ok. He d/c'd the monitor, even though I don't think that he's gotten the latest report, but honestly I haven't been using it at all for over a week anyway because it started acting funky. I know I should've asked him about the report, guess I didn't think about it, I'll call to ask...he actually asked me why they hadn't stopped the monitor and I said, "don't they need the order from you?". I'm still going to give this office a couple more chances, but if I have to wait that long during cold, flu, & RSV season then I'm gonna be fuming!

Speaking of that season coming up, I'm going to be really nervous about her catching something. I hope I can follow through and be diligent with hand sanitizer and having others do it and not a lot of visits and only 100% necessary outtings! If anyone has any tips for me I would appreciate them very much!

Oh, we had our Early Intervention assessment and of course they loved Raegan! Who doesn't?! She was in the best mood when they came, I had only given her 1/2 a bottle beforehand, enough to keep her satisfied and not too much for all the moving around. Raegan talked to them the whole time and they assessed her at her real age, which was good so that she can get the maximum benefits of their programs. She did very well cognitively, socially, communicating and with fine motor, we just have to work on gross motor...so she qualifies for physical therapy! Yay! Because I am really getting worried about how she favors which way her head is turned, it seems as though she's getting some torticollis and the EI team said she is getting a flat spot & bald spots! I can't wait for it to get started, I should find out after Monday when that will be...

We have been hearing a little bit of laughter from Raegan and I'm really trying to get a good belly laugh out of her, she must think I'm nuts, but hey, she smiles at least! Her laugh now is kind of soft and I feel like I'm the only one who knows when she's doing it, however, tonight I had her laying in my arms while I was on the computer, I thought she was sleeping but she started laughing! I thought maybe it was in her sleep, she does that sometimes, but it got louder and she was awake! My fiance heard it from across the room and bolted up to come look at her! He went to get the camcorder and of course by then she was done and no amount of goofiness could bring it back, but there's always tomorrow!

I have some resentment sometimes about my pregnancy and I feel so guilty for even bringing it up here because I have the end result to what all mothers want, a happy, healthy baby. But every once in a while when I see a pregnant friend being so round with baby belly I am feeling a bit jealous that I didn't get like that, I never felt her have hiccups because she never got that big. There's also the jealousy of other NICU moms who get to bring their babies home after only a couple of months. Oh my God, I am so foolish, I really only feel that way for like a half a second! I am so happy for them and every journey is different. Raegan obviously came home in her own time and she is such a blessing!
There is some good I can do that has come out of our situation and that is to find other moms-to-be with the possibility of having an IUGR baby and let them know what we went through and our ultimately, most positive outcome! Yes, I "stalk" them out on pregnancy complications/high risk message boards, lol! There is one woman I found that is going through this diagnoses right now, she is only 20 weeks and has a growth ultrasound next week...please pray that her baby has not fallen behind any more than it already is!

So much for this being short! Like someone has told me before, no one has to worry about me skimping out on the details! Glad I got this done and I can get to bed now:) And of course the recent pics of my cutie!!

~Kelly

DSCN1975t

babygonewild

DSCN1995t

DSCN2000t

Posted by Raegansmommy | Comments: (3) | Permalink

MY BABY DOESN'T FEEL GOOD:(

Jul 24, 2009 10:20pm (EST)

Well, this is our first bout of illness after being discharged from the NICU:( I guess it started a couple days ago when she went down on her overall intake. I thought maybe it was just a rough patch and we'd ride it out, besides she was still acting fine. Not sleeping any more or less, no temps, etc,...yesterday when she woke up she sounded a little stuffy, still she acted fine and the stuffiness went away after picking her up, which I kinda chalked up to having the window open & she's closest to the window. Except for a few times here and there where she'd maybe be in a bad position, she sounded fine all day. Sometimes she always sounds a little wheezy after laying down flat on her back (which mind you is pretty much only when she's being changed, as I still have her elevated while sleeping in the bouncy seat or swing), but yesterday she was more so stuffy in those bad positions. So, this morning I kind had to coax her up @ 7:30am because it had been awhile since her last bottle. She sounded fine and sucked down most of the bottle after realizing she was starving:-P Raegan then fell fast asleep again & I had to wake her up at 11am because the visiting nurse was on her way (she hasn't seen Raegan in almost 2 weeks & was supposed to come on Monday). This time she sounded really stuffy. After we started to take her diaper off & take her temp the VN noticed her wheezing & stuffiness, add that to the food intake and she said take her to the Dr. Especially where it's Friday, before the weekend. OK well I hope she doesn't think I'm a bad mom! She didn't seem like she wanted to go until I made the call & even suggested to do it herself. Of course I was going to call, it's not like it could hurt and now I was pretty worried seeing as how she's the one with the stethoscope (& degree), plus I knew Raegan sounded worse!
So, at the ped's office she saw another Dr because our Pedi wasn't in, which isn't a big deal since the regular had on seen her once anyway & it's not like I was overly impressed...the visit was kinda short & sweet, she sounds fine, has no temp and her o2 was normal. I asked if it could be allergies since the window's open, she had been sneezing quite a bit and then I notice in the waiting room that her eye is tearing & watery. The Dr said they usually need to go through the 1st season to develop allergies. She diagnose her as having her "1st baby cold" unless other symptoms develop there's nothing to do but wait it out.
I was fine with that, not really worried, and knowing she'd be ok. So, this afternoon we are home poor little Raegan is sneezing quite a bit:( Tonight I have also noticed more wheezing. If the wheezing continues or, obviously gets worse I will page the pulmonary Dr. He gave us a script for an inhaler, I assume he will just suggest we use that, fortunately we have a GI appointment at Children's on Monday. I'm sure they will be able to tell then if it's anything to be overly concerned about, still I can't help but worry and look at my little baby with her sort of swollen, red, teary eyes and have that "motherly" worry.
To top that off, my fiance gets upset with me because he had told a friend he could come by, with his girlfriend & their baby that's a week younger than Raegan! WTH, is he a complete idiot that still doesn't get the importance of not only letting a sick baby be, but a preemie?! Good God, is there some kinda class I can send him to?
We also have our initial assessment with Early Intervention on Monday afternoon. It's going to be a busy day and I hope she's better by then!

phonepic

DSCN1927t

DSCN1916t

Posted by Raegansmommy | Comments: (6) | Permalink

HOME LIFE:-)

Jul 11, 2009 09:50pm (EST)

Oh my goodness, this is like my 3rd attempt for our at home update! Every other time I've started to fall asleep!!! I wouldn't trade it for anything in the world though, it is the greatest feeling ever to be able to be a mommy to my baby girl 24/7. She has been fabulous and the NICU truly is becoming a distant memory.

There is lots to update though....the day after d/c we had our pedi appt. He's very nice and all, we were just surprised when he listened to her heart for like 5 minutes then said he couldn't hear the murmur! I guess this is why we have specialists, thank goodness! He also wasn't aware that Prilosec came in liquid form, so we'll see how the next appt with him goes. It's not like I had met with him previously or had been referred to him, I simply saw that he was accepting new patients, was affliated with Children's and Beth Israel, and was Harvard educated. Fortunately, everyone in the office seemed nice enough. Raegan weighed 9lbs 5oz, so gained an oz in a day (but I've come to realize that all scales ARE different) and she apparently shrunk 1 3/4in, lol! We had a good 1st/4th of July weekend and actually took her out to her Aunt & Uncle's for a cookout & to show her off of course!
Monday we had the visiting nurse and according to her scale, Raegan was 9lb 7oz. The nurse came again on Thursday and I believe Raegan was at least an oz more. I'm starting to get it all jumbled up because we also went on Wednesday and Friday to Children's for follow up appts and she was weighed both times. Again, both were different. At least I know she is gaining, especially where I didn't think she was eating enough. In the NICU she was taking about 100-120cc's every 4-5 hours, at home she was taking like 60-100cc's every 2-5 hours and easily falling asleep in the middle of feeding or once she was burped she wouldn't go back to the bottle, making faces like it tasted nasty. I'm sure she was still adjusting to the changes because the past few days she has really been a good eater, eating 80-120cc's every 3-4 hours and a 7 hour stretch overnight. It's funny, she'll really start gnawing and sucking on her hands when she's hungry, no, she doesn't scream to wake up! I have to hear her squirming and sucking, then pick her up and change her, after that is when she's ravenous and screaming to eat! Her monitor hasn't really gone off a lot either. The 1st few nights the apnea alarm went off, looking at her she seemed absolutely fine. The other day she was in her swing and it kept going off, so I sat there and watched her breathing and it still went off, must've been her positioning. As for the night time, I guess I haven't been as much as a nervous wreck as one would think. The 1st night it took me forever to fall asleep, and then I woke up with every little noise she made (still do). The monitor does offer me some peace of mind though, don't know how well I'll sleep when it's gone! I think today I've had her off of it for most of the day, it just really sucks when the leads come loose, I can't believe the continuous alarm for that, it's a bit ridiculous!
When we saw Endocrinology on Wednesday it was a pain because they didn't have her medical records and therefore didn't know her thyroid levels from all of her labs. The NP said I was supposed to have it faxed to them, well that would've been nice to know! They also told us that we shouldn't be diluting her crushed Synthroid pill with formula because the formula is iron fortified...I knew that we shouldn't give her iron supplement until at least 4 hours after her Synthroid dose, but this was news to me, we can't even give it at the same time as her feeding!! So, her meds have become an issue, well, trying to get them all in and at the same times each day!
We saw Pulmonology on Friday...much better experience! The NP was great and the Dr is wonderful! He wants her to have an oximeter with her gear for an overnight study so we can get rid of the monitor. He said we don't even need to put it on her, just need the report to show she doesn't desat.He gives his pager # to all parents and encourages (pretty much begs) to call with any concerns. He wants to keep her out of any ER if he can and gave us a prescription for an emergency inhaler. He also told us something they have been telling parents is not to be overly afraid to take your child out, like to family functions and quick errands, you really don't have to stay isolated inside. This is good because these were my plans anyway:) Of course I won't take her to overly crowded indoor places or have her around illness, but we will be visiting family and going shopping when we need to (and all with lots of hand sanitizer, or "Raegan Soap", as her cousins call it). I've learned that traveling to Boston with a baby and all her gear is much more exhausting, but I'm glad to be doing it at all!!
I got a call from one of the NICU Drs today, she was checking in on us and was very nice. She could definately tell how happy we all were to be together! I've been keeping in touch with her nurses too, our regular primary already stopped by our place to see her so that was very nice.
Sorry this is so long, I'll have to stay awake next time!!

profile

happygirl

holdingbottle2

tubby

Posted by Raegansmommy | Comments: (9) | Permalink

FINALLY HOME!!!!

Jul 01, 2009 03:42pm (EST)

WE DID IT!!!! YAAA HOOOO!!!!! FINALLY after 144 days in the Beth Israel Deaconess Medical Center NICU, we are HOME!!!! I am sooo freakin' excited and relieved! Of course I'm a little nervous and scared, but more HAPPY than anything! I didn't even cry like I thought I would because it was so awesome to put her in that car seat and watch the nurses and Drs say "Goodbye!". We said our goodbyes to Raegan's primary nurse last night and I cried more then, she's just so great and we will definately make sure we don't lose contact with her!
As soon as I got into Raegan's room, she was sleeping in the swing and I just said a quiet, "Hi Baby", she woke up. Raegan was immediately full of smiles and cooing away! It's so crazy, like she really knew what was going on, that it was time to go home:-)
We went over our last minute discharge papers and were out that door!! We will never have to step foot in the NICU again (with Raegan anyways), when we do go to visit, of course, we have to stay out in the hall.
Raegan was sooo good on the ride home, she was smiling and talking. Her nurse told us she would probably be tired, but she slept for like 5 minutes and was up again being very happy!! When we got home she was ready for a bottle, then fell asleep and is sleeping right now in the swing right next to me (or else I wouldn't be writing this!).
OMG I am soo over the top happy and I know you are all happy for us!! Thank you for the support, I'm sure it won't be the last of it as I will definately continue to blog about Raegan's development!
Now for some PICS:-)

DSCN1786t

DSCN1790t

DSCN1792t

DSCN1795t

Posted by Raegansmommy | Comments: (7) | Permalink

WEDNESDAY

Jun 29, 2009 11:31pm (EST)

Wednesday is our next hopeful day of discharge. I can really say that I believe this will be it, but of course at this point I can't fully buy into it...Our newest formula seems to be working! She started it on Friday night and the 1st bottle was a little tough because it's a different taste, so she only took like an ounce. 3 hours later she was ravenous of course and sucked down almost 3 ounces. She seemed to be getting hungry faster all weekend which is good because the nurses were saying they often have to wake her up after 5 hours and she's still not that into it. One of the suggestions GI made was for her to eat smaller qauntities, more frequently, we were thinking that would be out of the question where she usually sleeps a lot and even had trouble reaching her minimum each day. So, the Nutramagin is doing it's job in being digested more easily and quicker! I also don't think we will have to thicken it because I kinda think that she can control the thinner liquid better. Most of the weekend we didn't hear the gagging cough and she certainly wasn't choking on anything!! The nurses were so pleased and so are we, they even said to the Drs that this has to be it and they want her to go home Wednesday. We did hear the gag cough 2 times today, but that was because she didn't really want the binky when it got offered. She definately had nothing coming up though and no heartrate drops!!!! Trust me, I kept looking too...I even thought maybe it could've been silent, so I practically held my ear to her throat, but she was all clear!!! OH PLEASE LET THIS BE IT!!!!

Oh, I realized last night that the Neonatologist at Raegan's delivery co-wrote, "The Preemie Parents' Companion". Her name's Jane Stewart and I actually ran into her one day going into the NICU. She said I looked familiar and oh yeah, she was at my delivery. Funny, I didn't think I looked anything like I did the day I delivered, lol. But it all just goes to show that we have had such a wonderful team of Drs helping us along the way! Luckily, I also found out that the attending on doesn't leave until the middle of July, Thank God!

Posted by Raegansmommy | Comments: (3) | Permalink

VERY FRUSTRATED

Jun 26, 2009 11:38pm (EST)

Ok, there is a new plan because last night Raegan had a spell. Her heartrate was in the 50's and o2 sat in the 60's, she did not require o2 but needed moderate stim. This all happened 5 HOURS after her last feed and involoved a spit! Why in the world is anything attempting to come back up after 5 hours? The attending called me to let me know and wanted me to understand why she can't feel comfortable discharging her until something seems to be working out. Geez, next week starts another rotation with a new fellow and attending...will they have different philosophies and new plans?! They come in with a fresh perspective, they can say they understand our frustration, but truly they don't because it hasn't been that one Dr with us the whole time. If you ask the nurses though, they'd say, "GET HER HOME!!!". The nurses do love her to pieces, she is so social and they can play with her....they'll love her even more now that I'm bringing in different outfits and girly accessories to play dress-up with little Miss Raegan! I had a pair of jelly shoes for her and boy did I hear about how much they all got a kick out of those tiny, cute shoes, lol. It is fun to dress a cutie pie girl!
So, the GI team at Children's were consulted once again for their suggestions. It was determined that they want her back on the prilosec and think she should have never been taken off. That also means off the Enfamil AR. She started Enfamil Nutramagin tonight. The thinking behind this is that the proteins and such in this formula make it more easily digested, so it could help her not have enough to spit up from her belly hours after a feeding. We are back on the Prilosec and if it seems like Raegan needs a thicker feed than it will be done with rice cereal (not the pain in the butt food thickener they were using, figures since I bought a can of it last week to use when she came home!!) I was the one who got all the info from the fellow Dr today, so when my fiance came in tonight, he didn't understand why they would so suddenly change everything. I told him the reasoning but he still is angry they changed things so quickly and didn't give it enough time to work. Wouldn't the AR have taken effect right away? The Dr did tell me that if I wanted to continue the AR over the weekend we could, but that is more time....of course I don't want to look at more time!!! So I took it as my fiance being upset with me and after being sad already, that was the last thing I wanted to deal with, feeling guilty that I told the Dr to go ahead with the new plan. I am not a Dr, I have not been in this situation before. Heck, I can't even find info on the internet that I can relate to pertaining to a long NICU stay and this type of reflux problem! The nurse we had tonight will make sure the Dr gets called in the morning and then call my fiance to talk about it with him. The last thing I need is to argue with him about options and what the Drs say, but I know he can get just as aggravated by this whole situation.

I know I can't have many answers, but I am glad that I can come here to write about it and just vent, get it all out! Thank you all for listening and responding! I am getting kind of depressed...I am fine while I'm with her at the hospital, but find it so hard to get going at home. When I get in the car to go to the hospital I usually cry, because it sucks that I have to drive 45 minutes in crappy traffic to be with my baby!!! I cry when I get into the car to go home because I feel so guilty leaving her!!

I brought in a couple of rattle toys for Raegan to play with...I had to put the phone looking one in her hand for her to grasp, but right away she put it in her mouth! At one point she did reach for the toy from my hand, but she of course needs more practice with her fine motor skills!

I can't believe that next week is the beggining of JULY!!!

cutie

rattle

Posted by Raegansmommy | Comments: (8) | Permalink

STILL NOT HOME

Jun 22, 2009 10:40pm (EST)

Well, here we are, still at the NICU. I guess it shouldn't be too surprising, this is now a pattern. I really thought though that this would be IT. I mean come on, they were gonna let us take her home even though she still had spells! Sunday afternoon she had a doozy and required blow-by o2:( I was getting things into their final places, getting her diaper bag packed, putting pictures in a little toy book for her to look at....and then my phone rang, I thought at first it would be my mother and as I was walking toward it I knew it was the NICU. Her nurse that day said she had a bad spell and she had to give her the o2 even though she really tried to hold off on it...She had been taking care of another baby and saw Raegan's alarm going off on the monitor so she ran into the room. Raegan had spit up coming out of her nose and mouth, struggling to breathe, her heartrate was 59 and o2 saturation was 81 and she was blue. The nurse bulb suctioned her out and her heartrate started to come back up, but then dipped down again (I've noticed her do that before too). Raegan kept her jaw tight and the nurse finally had to give her the o2, she said she had to keep it on for about 4 minutes and Raegan was so exhausted afterward. Of course I don't blame her, I just wish there was a clear cut answer for us!
So today we are at 135 days and counting...I was walking out of the unit when a nurse ran right by me and toward a couple with their baby in the hallway. It was a little baby girl, she was born a month before Raegan at just 24 weeks weighing 1lb 3oz, she was discharged about a month ago and seems to be doing just wonderful. Of course her parents were so proud and beaming, that baby girl is just as beautiful as Raegan! They asked what day we were on and I said 135, that is exactly how many days they were there! How ironic, we were really thinking our discharge would be on that day. I am very happy for them though, that little girl looked great!
We sat down to talk to the Drs about the plan. As of now she will discontinue caffeine, because it is clearly not central apnea and caffeine tends to cause reflux. She will also discontinue Prilosec so we can start Enfamil AR. The only other suggestion they could offer was the possibilty of a nj tube but where she is such a great oral feeder it is a tough decision. I really don't want to go that route, but I guess we would if we had to, I just want her to be able to bottle feed. That would be difficult to just stop if you were a baby, I would think, and then be expected to start back up again at some point? She mentioned a cardiology consult to make positively sure this has nothing to do with her heart and VSD. I didn't ask what kind of timeline we were now looking at, maybe because I'm afraid to hear the answer. The Dr did however, mention it could be a long road...it HAS already been a long road!!
I'm feeling so guilty leaving her there...when I am holding her she REALLY cuddles with me! If I have her positioned on my chest (like kangaroo care) she moves her head close to my neck and I rest my chin against her, she looks up at me as if she wants to make sure I'm still there...If I hold her cradled in my arms she stares at me, and I right back at her because who would be able to look away from that gorgeous face?!
I know so many people say she will be home soon, can someone please tell me how long soon lasts? Like I've said before, even the nurses look at us with pity....it does suck, but I need to hear how lucky we are that Raegan is here and so lively, I'm tired of hearing she'll be home soon....

Edited to add; I can't believe I forgot to mention that this chunka baby weighs 9lbs as of tonight!! As you can see in my pic, if you think she looks happy on the scale it's because she is, she loves being weighed! The other pic is yesterday when I came in she was sound asleep in her crib looking so darn sweet with her seahorse. Her bff, lol:-)

9lbs

bff

Posted by Raegansmommy | Comments: (3) | Permalink

SOME PICTURES

Jun 18, 2009 11:43pm (EST)

I didn't think my previous post had gone through, but I see it did...I forgot to mention that Raegan will be going home on a monitor because they did put her back on caffeine a couple weeks ago. It is an apnea/heartrate monitor and we had the vendor come out last week to give us a demonstration. So, yeah, those things are LOUD!!! I guess this will be the icebreaker to meeting our new neighbors in this appartment building we just moved into, oh boy!! After all I am going to have to warn them about the sound that it makes! It has 2 leads, 1 for heartrate and 1 for breathing...so I really hope that these leads stay on or at least are more stick than the hospital ones because I really don't need to be having heart attacks from false alarms...any input?
The monitor does have a display, it's not backlit though and is on the bottom of the unit. I'm not sure if it displays the numbers continously or just when an event occurs, as we have not put it on her yet.
I can barely contain myself!! I hope nothing else happens between now and Monday (and especially AFTER then)!! Raegan's been having some tough sleepy times lately where she'll go 5hrs or more between feedings. I know it's great that she can sleep, but if it affects her weight gain than we're in trouble! So far, so good though because she gain like 2oz and then lose like 10 grams the next night, so she's holding a good average!
Well, I have lots to do tomorrow, one being an eye exam (for myself, lol), yuck!

DSCN1703t

DSCN1688t

DSCN1713t

Posted by Raegansmommy | Comments: (6) | Permalink

DAY 130

Jun 18, 2009 12:01am (EST)

I can't even believe it has been 130 days in the nicu! Well, all these nurses here have definately become our family, Raegan would not be here without all of them! I wish I could do more for these wonderful, compassionate ladies...they are the BEST!! I wish I could have her primary's come and live with us, lol!
We are starting to see the light at the end of the tunnel....I have spoken with the newest attending on rotation and it is agreed that Raegan can be discharged on Monday provided that she can come out of any spells without any serious intervention. They also have to make sure that we are comfortable with helping her with her episodes. I know I am but of course it's going to be next to impossible to feel comfortable with letting Raegan out of my sight! It's going to be tough to leave that big Heartrate monitor display too, but I know I can do it and she will have a monitor, just a just about invisible display!
We will be taking the CPR refresher (since we originally did it 2 months ago!), even though it's not a certification it is helpful. I was certified already, but my fiance is not and I have to be able to feel confident in his ability to handle any possible situations too! I will be letting the town emergency services know of discharge and warn them that she still has heartrate drops, just in case I have to call them at any time. It's not fun to think about but it's a step toward being prepared. Fortunately she hasn't required any oxygen to help bring her back up from these spells. Which now her last one was last night, but we continue with this plan and discharge! She's had a choking episode sometimes more than once a day, but we have been helping her out and she's coming along, just at her own pace.
I have decided today, finally, to stop pumping:( I really wanted to wait until Raegan came home so I could nurse her a couple times a day, but at this point anything she got from me would only be a mini snack and we can bond other ways! We already have bonded and I can just tell by the way she looks at me (and now smiles and coos!) that she loves me and know I'm her mommy! She even cuddles with me!! Oh, I could go on and on forever about the all the adorable sounds and facial expressions this miracle baby makes!!!
I recently became acquainted with a woman over the internet who has a micro-preemie, she's not on share but does have a blog and baby is doing great! I am praying for them everyday!
Welcome to the world Amelia!!! You are doing a great job!!!

Posted by Raegansmommy | Comments: (4) | Permalink

HERE WE GO AGAIN

Jun 13, 2009 11:07pm (EST)

So SAD! She had an episode on Friday night (last night)...I don't like the ride and I want it to be OVER! I am seriously getting nauseous thinking about it all!!!
I was giving her a bottle and she gagged on the nipple causing her to reflux and choke. She hadn't been hooked up to the monitor so I turned it on while she was doing it to see what her heartrate was and it was like 79...so the low HR alarm went off (sounds just like low O2 alarm, which isn't as serious, the low o2's been going off a lot lately because the oximeter's not picking up very well), there was a nurse feeding our neighbor behind the curtain and she asked if I needed help. Of course I said yes, she came over, sat her up and patted her back (which I had done) but also opened her mouth to help her airway...Raegan came back up, her o2 was also reading very low, like 75, but it went back up to like 99 so quickly that I think it wasn't picking up (this is what it does when the oximeter isn't working right) and that makes sense because I had just turned the monitor back on...the nurse did think that she looked pale though:( Our primary was on too, reviewed the event and talked to the doctor on call which is the attending that is on this month that we have been communicating well with...they both came in, the Dr saying how sorry she was and Raegan can't go home on Monday:-(
She explained how she was just at a loss and would have to speak with her colleagues so we can regroup on Monday with a plan. For now she really wants me to be confident in handling these episodes by myself, just to call a nurse when it happens and have them "spot" me until they know I will be able to handle this at home because I KNOW she's going to do this at home. It is something that I believe will take her a while to grow out of, unfortunately. I cried and of course both of them welled up, everyone feels so bad for us. I think that makes it a little more difficult because like her daddy says we are sooo lucky that she's here and she's awesome! But, like I've said before, there are so many emotions to feel....I want her home so bad it makes me sick. I am afraid that she will be behind developmentally because of this long nicu stay, she's needs more tummy time and more play time to strengthen her muscles...I know the nurses try to do this when they can, but they are so busy and I can't be there all the time:-(
I feel so guilty for all of this, I should have been able to help her, I should be confident in myself. I do know that when it's going to be me, by myself with her I will be able to handle these situations. I have dealt with emergencies before and remained calm and rational, surprisingly, that is what takes over and you deal with the being afraid after...I have taken care of babies and children for a long time and now that it's my own everything is turned upside down, Raegan is not typical baby. She really is extraordinary!
She's got the sweetest voice and loves "talking" to the ceiling light! I brought in a crib mirror and she was so freaking cute, although I think she might have been talking to the border of the mirror and not the reflection of herself!

havingfun

talking

Posted by Raegansmommy | Comments: (6) | Permalink

Archives