Day 129 - Problem

I'm not sure how well you can see this picture. It was kind of dark and I didn't want to disturb Chloe with a flash. What do you see wrong with this picture?

















Well, considering the poor quality of the picture I'll go ahead and help you. 1. Chloe is naked and in a heated bed. 2. She has a collection bottle at the end of her NG tube. 3. She has an IV in her right arm.


Long story short: Chloe was exceptionally gassy last night during our visit. Even so, she did finish all of her nighttime feeds. This morning she was really irritable, though, and only took 1/2 of her 9am feed. I was there before her noon feed. Her nurse decided to pull back on her NG tube and, to our dismay, pulled back her ENTIRE feed from three hours earlier. They did an xray and her bowels are dilated and full of gas.


We don't know what's going on with her. There are many possible reasons for this. They're first going to try and rule out an infection. They took cultures and started her on antibiotics. We'll get the final results on those after 72 hours. They're also considering a possible blockage in her intestines. I thought we were done with that but, apparently, that old rupture could still rear its ugly head in the form of a blockage even now. Ideally, her bowels will just go back to normal overnight and she'll be fine in the morning. We have no idea what's in store.


On my way home from the hospital today I was happily in attendance at my pity party and crying away in the van (my favorite place to cry). I mentally shook my finger at Leila and told her, "You're sup-POSed to be looking out for your sister," in my best Mommy voice. No sooner did I think that than it occured to me (she talks back to me quicker than Solana) that Leila was probably whispering in Chloe's ear all along to not finish her bottles so she could stay in the hospital longer and be in the best place when this happened. Whoops. I thought, "Sorry, Mija. You did a good job taking care of your sister. Love you :-)"

Day 127 - Trying some changes

Chloe has been on a few different medications for a while now. In an attempt to get her off of oxygen, she's been getting a couple of different diuretics. And because she's on diuretics she's also getting sodium and potassium. These are pretty foul tasting medicines. While some babies tolerate them, Chloe finds them utterly disgusting and protests taking them by mouth. This becomes an issue when they try to remove her NG tube. If they try to sneak it in by squirting it alongside her bottle she gags, holds her breath, and desats. If the mix it in with her milk she refuses her bottle.

Today they decided that, since the diuretics aren't working to get her off of oxygen anyway, they'll stop them. And since she'll no longer be taking diuretics she'll no longer pee out all of her electrolytes they can also stop her sodium and potassium. The hope is that Chloe will be more successful in taking her feeds by mouth if she no longer has to take these unpalatable medicines with them. And also that the discontinuation of these medicines has no ill effect on her lung function.

Please pray with us for Chloe. It's almost taken her a month to become successful at eating. And while we're being ever-so-patient in letting her figure this out it sure would be nice if this new change worked. Our antibiotics seem to have worked. My mom is in town until January 3rd. We sure would love to have Chloe home soon... :-D

Day 125 - Coasting

Can you tell I've been avoiding posts? I don't really know what to say because there's really not too much going on with Chloe. Her NG tube is back in. She's taking about 85% of her feeds by mouth every day. She's finishing her feeds for the most part but every once in a while she'll get tired and only take part of her feed so they just NG the rest (put it down her feeding tube). Fortunately, she hasn't had any more big episodes like the one she did a few days ago. They still think that was just a result of too much excitement/stimulation that day. They're not doing anything to prevent them in the future, per se, we're just watching her and giving her more time to grow and get stronger.

We've had some controversy over Chloe's bottles. The feeding therapist introduced the Dr. Brown bottle and then I brought the Breastflow. After a few days on the Breastflow the feeding therapist was really impressed with the bottle and how good Chloe's suck/swallow/breathe pattern was when she fed from it. In fact, she thanked me (and my SIL, Carol) for introducing it to her and is going to integrate the Breastflow bottle into her program. But Chloe was on the Breastflow when she had her big episode so some people think it might be problematic for her. The nurses have been going back and forth with the bottles and I've called for updates after every single feeding the last few days; trying to find a pattern. I've finally decided that the bottle makes no difference. Good feedings and bad feedings happen with both. So last night I finally declared that we will stick with the Breastflow. Switching back and forth can't be good for her.

Back at the homefront Dave, Solana, and I are all on antibiotics for sinus/secondary bacterial upper respiratory infections. We all caught an upper respiratory viral infection a couple of weeks ago. Apparently, enough snot stuck around to turn into sinus infections :-( What a Christmas!

Here's me looking at the bright side:
-It's a good thing Chloe's not her while we're all sick!
-We should feel better in a day or so since we're on antibiotics.
-Chloe's coasting around the same place. She's not getting apparently better but she's NOT getting worse.
-My mom is in the air on her way here and that's ALWAYS a good thing! (She'll go snuggle Chloe tomorrow while I'm still keeping my distance.)
-Dave and I will probably go to the movies this week - something we wouldn't do if Chloe was already home.

Sigh.

Day 124 - Merry Christmas

Merry Christmas!

Love, Chloe

Day 122 - Happy 4 Month Birthday, Chloe!

Bad Attitude has left the building

Ok. I'm over it. My self-pity fest actually didn't take too long to peeter out. I worked hard in Chloe's room today and that made me feel better. Plus, I got a swift kick in the pants to remind me of what's important. Chloe will come home soon enough and I'm pretty darn lucky for that.

Bad Attitude

This is for all of you who always compliment me on my upbeat and positive attitude.

I'm completely depressed today. Chloe was almost home. I could practically smell her in our house. "She could go home in two weeks" was three weeks ago. I was ok with that but this setback has just hit me hard. I feel like a little kid pouting over something they wanted but couldn't have. And with all the crap Chloe has been through and all her suffering I can't believe I'm so upset about not getting something I WANT. How selfish is that?!?

Anyway, don't bother telling me it's ok to feel this way and not to beat myself up. You all are so supportive and encouraging. I know you were about to hit 'Comment' and write that. I just needed to put it down and have one more good cry to get it out of my system. Solana is cleaning her room right now. I need to go play with her for a while. Hopefully now I can force myself out of this funk to do that well.

Day 121 - So much for our big plans...

Our carseat is at the hospital. Chloe has had her two month vaccinations and Synagis (RSV preventative). Dave and I completed the CPR course and Chloe's NG tube came out. She also had her weekly eye exam yesterday and the doctor said the ROP is gone and she only needs exams every other week now. We're one foot out the door.

Then, after I fed her last night she desatted. Big Time. She was in the 50's and started turning blue. It was like she passed out and turned limp. Her heartrate started falling - never below 100 but it was almost there. We couldn't get her to snap out of it and the nurse had to use the oxygen mask to finally get her back up after about 2-3 minutes. I was worried that I had triggered a vagal response when I tried to burp her and talked to the nurse about positioning. But then she did it again after her next feeding, which was given by the nurses.

They did bloodwork and looked at her white/red blood cells. Those look normal so they don't think she's sick. Now they're looking at her bottle. I started using this great bottle called Breastflow. She's used it for a week with no problems so I doubt that's it but I think they're just trying to come up with any reason why she'd react this way after feedings. I hope they figure this out and it's something simple. I really don't want Chloe to have any more major problems. But it's kind of scary to imagine her doing this once she's home - which, I'm pretty sure won't happen this week.

Day 119 - Bottle

Chloe is:

119 days
17 weeks
almost 4 months
4lb 6oz

Working hard at the bottle. She's taken all of her feeds my mouth over the last two days with the exception of two. And those two were actually the fault of her nurse who put her bottle together incorrectly (ooooh, I was so mad!) yesterday. It's an annoying story that I don't want to write about but let's just say that that particular nurse has been added to the (very short) "you no longer have the privelege of caring for Chloe" list and we won't have to worry about her again.

Dave and I took the infant CPR course today. Chloe is finally substantial enough to get her two month vaccinations and may have actually gotten them already.

There's really not too much to report. We just need to see her take her feeds well for a few more days and she'll get the boot! Until then, Bottoms Up Chloe!

Day 116 - I've Been Workin' on The Bottle....

She's working at it! Chloe is doing really well at the bottle. She's had a couple of really long periods (like 12-18 hour stretches) of taking her entire feeds by bottle and then she'll have periods of being too tired to take her bottle. I think her too-tired periods are getting shorter and more spread out, though, as she grows and gets stronger. 4lb 5oz, by the way :-D

They actually have a minimum requirement that she has to eat - it's 35cc's every 3 hours. She took 84% of her feeds by bottle yesterday and the rest was given to her by her NG tube.

I spoke to the nurse practitioner this morning and, since Chloe does not suffer from Brady or Apnea spells**, she can come home as soon as she is taking 100% of her feeds by mouth! That could be as early as Monday or Wednesday (the days they give Synergist shots - an important immunization required before leaving the NICU)!

Plus, I want to thank you all for your encouragement on Chloe's breastfeeding hiccup. I tried the shield for two feedings yesterday and it worked great for Chloe! I guess it just makes it easier for her to get the milk out. She took almost her full feeds both times!

**Brady (heartrate drops too low) and Apnea (baby stops breathing for an extended period of time) are really common for preemies and those are often the big hurdles to overcome before babies can go home. With all the problems she's had I don't know how in the world Chloe sidestepped those. It may be because she's past full term... I don't know, but I'm definitely not overlooking that as something for which to be grateful!

My New Favorite Necklace

Solana and I had girls night tonight with my friend, Angela, and her two girls. We saw the Princess and the Frog and then went out for sushi. We had a fabulous time! Before the movie we had a little gift exchange. Angela gave me a gift that almost made me cry. It's my new favorite necklace and I'll probably wear it every day.

Before becoming the mother of an angel twin I could never have understood the range and power of conflicting emotions that I live with every day. I've read sad stories from other parents trying to find their way through their own emotions only to be hurt by family and friends who tell them to get over it or move on. I'm so glad I am surrounded by thoughtful and caring people. Even if they can't understand my feelings - they listen. And they have loving hearts.

I will always see Leila when I look at Chloe and Leila will always be part of our family. How Angela gets that I don't know but I am so thankful to have her as a friend.

Day 114 - My Arch-Enemy

It happened! After a measly two days away from Chloe the bottle has stolen Chloe's love from me! I tried to breastfeed today for 30 minutes and Chloe would give some little sucks and then just sit there waiting for the milk to flow into her mouth. Then, when nothing flowed into her mouth she'd get annoyed and turn away.

For those breastfeeding vs. bottle novices: it's WAY easier for a baby to get milk from a bottle than the breast. They actually have to do a little work to get it from the breast - sucking, jaw action, pressure, etc. With the bottle, on the other hand, the milk will pretty much just dribble out with little effort on the part of the baby. Chloe quickly decided that she prefers the easy method to get her meals.

(Note: Solana spent two days in the nursery when she was born and was given a bottle. I didn't know any better than to tell the nurses "um, okay" when they asked if they could feed my oh-so-hungry baby a bottle since my milk hadn't come in, yet. I then spend the next 6 months pumping full time for her because she wouldn't latch on afterwards.)

While it's certainly not the end of the world to have another non-breastfeeding baby I'm not giving up. The lactation consultant (who I really like) will be in tomorrow and I'm cornering her for as long as it takes to get Chloe latched on again. I only hope she's seen this before and has some good tricks up her sleeve. She told me that preemies usually go back and forth from bottle to breast with no problem. I'm holding her to that.

I've also purchased some bottles my SIL told me about called Breastflow. They supposedly require the same kind of latch-on sucking that breastfeeding does. Maybe if we can get Chloe to eat from those bottles we can get her to latch on...?

Day 113 - Chloe's Stocking

First Family Photo. 12/5/09





















(Gasp) Mommy! You gave me a fright!












Ugh! It is sooo loud out here in my new big girl bed. Tell those loud nurses to hush!











Chloe has a fun and crafty primary nurse at night. She wasn't satisfied with these stocking pictures and wants to do them again but I couldn't help but posting these now.









This is actually Chloe's stocking that she'll use every year. How cool will it be when she's bigger and she can say, "I used to fit in that stocking!"















The first time I got to help with Chloe's bath. 12/4/09. This was right before she moved into her big girl bed. The regular tubs were still a bit large for her (she wasn't a whopping 4 pounds, yet...) so we used one of those little bins they give you when you check in to the hospital. I don't know what those bins are really meant for but they sure are versatile!

Day 112 - 4 Pounds!

She finally did it! She's 1815 grams and that equals...4 pounds! Yay for Chloe!

My sore throat from the other day never amounted to anything. No runny nose, no cough, no sneezing, no fever, no aches. Nada. But yesterday I woke up without a voice. Still no other symptoms. I chalked it up to the weather playing havok with my sinuses and the nighttime drainage doing a number on my throat. I went in last night with a mask to breastfeed Chloe. (I felt like a total leper! But, although I didn't feel sick the mask was probably a good idea.) This morning, though, I actually woke up blowing my nose and coughing stuff up. I think my mysterious and elusive nighttime drainage is finally ready to reveal itself and is trying to turn into a sinus infection so I'm staying away from the hospital again and going to the doctor's office tomorrow. After a couple of hours of clearing all the junk out of my head I feel perfectly fine now (except my voice is still jacked up) but I figure it's best to go to the doctor first. I guess I'll just tell them to, "test me for everything and anything that could cause congestion." I don't know what else to do...?

In the meantime, Chloe is doing fantastic with the bottle feeding. She has drained ALL of her bottles since 8pm last night! It's like something finally clicked and she figured out what to do! I'm very excited to hear this - it means she's on the right track to coming home!

It is still looking like she'll come home with oxygen. She's still on the 1/8th liter canula and is normally fine. In fact, her canula was hanging out of her nose most of the time I held her yesterday and I just left it to see what she did. She hung out around the mid-90's without the canula, which is great. When she gets mad and cries is another story, though. She'll drop down to the 70's pretty quickly when she's ticked off. I guess that'll take some time. I'm trying to imagine what it will be like with a baby at home and on oxygen. Will I be able to walk around the house with her or will we be stuck to one little corner of the house all the time? That hadn't really ocurred to me until last night so I guess I'll need to start asking. (Don't get me wrong - I'm not complaining. Just in planning/logistics mode.)

Day 110 - Single Mom-in' It

Chloe updates are pretty simple these days. I used to call the NICU and get a report full of all kinds of information. Now I call in and get a 10 second report. It's kind of weird. I find myself stalling on the phone with the nurses trying to think of something to ask or talk about. But Chloe's doing so well that there really isn't all that much to talk about.

She's slowly but surely getting better at eating. They're changing up the formula of her milk to something more palatable. Apparently, Elecare tastes really disgusting. They don't want to change it too quickly, though, and mess with her intestines. So there's still some Elecare in the mix. In addition, she's having endurance issues. Eating is a big job for such a small baby! She'll get there, though. They're feeding her a bottle every time she's awake for a feeding. And they've approved two breastfeeding sessions a day, too!

Unfortunately, Dave had to leave town for a work trip for six days so I'll only make it to the hospital once a day for the next several days. That's ok, though. He needed to get some extra time in work. They've been ridiculously generous with his time off and I'm very apreciative of that. Dave has been taking time off ever since we were diagnosed with TTTS back in July. He took me to all my doctor's appointments, surgeries in Columbus, time off when we lost Leila, for the birth, and all of Chloe's important procedures, trip to Michigan, etc. It's nice that he's able to do this one little extra thing for work. And fortunately, I am once again surrounded by incredibly generous friends who are offering to watch Solana. I have five babysitters lined up for the next six days (and only one of whom I'm paying - the teenager across the street:)!

Kim, Kathy, Ann, Dave, and Kelly - you are all my blessings this week and I am so thankful for you!!!!

New Background

Check out the background my friend, Megan, made for me. I LOVE IT!!! :-D I have absolutely no idea how to do them so it's a perfect gift. Thaks Megan! You Rock!!!!

Day 108 - Chloe's Secret

The feeding therapist couldn't make it in today. Fortunately, (before I had to say anything) the nurses decided it was silly for her to be the only person allowed to feed Chloe a bottle and that it would do Chloe no good to take two days off from practicing. The nurse practitioner put in an order for Chloe to get two bottle feedings plus one breastfeeding a day.

And as Chloe's nurse tried to give her the bottle Chloe told her a secret. She said, "I don't like the taste of that yucky Elecare. I just like my Mommy's milk straight." So the nurse promptly prepared a new bottle of straight milk and voila! Chloe took 20cc's! That other lady wanted tag Chloe a "difficult feeder" and start all kinds of crazy stuff to "teach" her to suck and swallow. All Chloe needed was for someone to listen to her :-) Thank goodness for good nurses! They want to try some different fortifiers for her so that she can keep up her steady weight gain. 3lb 13oz now! Yeah!

Unfortunately, I didn't get to go in tonight. Solana got a runny nose yesterday and my throat has been hurting all day. I called the nurse practitioner (already knowing the answer) to see if I should go in or not and she said No Way Jose! She gave me a visual of Chloe catching a virus and it wasn't a pretty one so I'm staying clear of the NICU for a while. I just needed someone else to make me do it. This is only my second day to not see Chloe. I know I'm totally spoiled - one more thing to be grateful for. I just hope she doesn't miss me too much.

Day 107 - Big Girl Bed

Chloe is in a big girl bed! Solana and I stopped by for a visit today and enjoyed her new bed so much! Solana couldn't keep her hands off Chloe. I don't have any pictures of her actually touching Chloe because she was making me really nervous. (She's kind of clumsy.) I didn't dare step away for even a second to grab the camera. I managed to reign in the big sister, though, and all was good :-)

They also put Chloe on "home going" oxygen. Her canula is only 1/8th of a liter, which is barely a poof of air in her nose. She's doing great with it!

She didn't do too well with her bottle feeding, though. She only managed about 3 cc's. By the time they got around to feeding her, though, she had already been crying for about 20 minutes (I think from hunger). Not the ideal learning scenario. I'm no expert at feeding technique but I suggested that perhaps the Fedding Therapist start her bottles before she's thrown herself into a fit of rage. I don't know. Just a thought...

But she did great at breastfeeding tonight. I harassed the nurse into finishing Chloe's assessment early (and threatened to whip out my you-know-what if she didn't finish before Chloe got upset) so that we could start feeding while she was still in a cooperative state-of-mind. She got 23 out of 35 cc's - her best showing yet! At least I know she's capable of suck/swallow. Now it's just a matter of getting her to do it on a bottle and we can take her home!

Day 106 - Chloe and Leila's Due Date

Today was the girls' due date. I've been feeling some anxiety about this date for quite a long time now. Knowing that it would be strangely difficult. I had a few moments of self pity today, for sure. But it's the end of the day and I'm so thankful that it was not so bad at all. Chloe is doing really well right now and that has made all the difference to my state of mind. This is just one more small blessing I've been granted and for that I praise God.

Chloe had her second session with the speech/feeding therapist today. It went...ok. She was a bit fussy and didn't really seem to enjoy the bottle experience. I sat by and watched this woman feeding Chloe and felt some mixed emotions. Intellectually I know that Chloe needs to learn to eat from a bottle before she can go home. I can't be there for all of her feedings so she must master the bottle and I'm anxious for that to happen. Emotionally I felt a little twinge of satisfaction that Chloe didn't like the bottle the way she liked her Mommy. The feeding therapist actually doesn't want anyone else to feed Chloe with the bottle until she's satisfied that Chloe can do it and that bit of...possessiveness (?) over Chloe's feeding is the thing that I think set off my jealousy. (And jealousy is what it is if I'm being honest here.) I think it's a mother's instinct. The way Chloe looked at me when she was nursing was such a bonding moment. I really felt like her Mommy - the person who can give her that which no other person can. Of course I don't want to share that in any shape or form with some stranger.

I kind of feel sorry for the feeding therapist. I'm sure I'm not the first person to feel some irrational animosity toward her. Starting tomorrow I hope Chloe does great with the bottle. The FT said she'd try the Dr. Brown's bottles. I remember reading about those on another blog and they're supposed to simulate the breast more than traditional nipples. Fingers crossed! For tonight, though, I win! Hehe!

TTTS Foundation

The TTTS Foundation has a fundraising event called the Matthew and Steven TTTS Walk for the Babies. The walk just happens to take place today - the same day as Chloe and Leila's original due date!

The TTTS Foundation and the founder, Mary Slaman-Forsythe, in particular, were a HUGE support for me during our fight against TTTS. Mary is an amazing woman who used her grief to help future TTTS mothers with information and support that cannot be found anywhere else.

TTTS is a very serious disease that only affects monochorionic twin pregnancies. That is, identical twins sharing one placenta. If you know someone pregnant with twins please make sure they find out from their doctor if their twins share a placenta. Send them to the TTTS Foundation Website and contact the foundation. They are a high risk pregnancy and will want to do everything they possibly can to keep their babies safe.

Please visit my fundraising page:
http://www.tttsfoundation.org/tttswalk/?chloeandleila

Day 105 - Nursing Chloe

Chloe is doing soooo well, you guys! She is growing, breathing, eating, pooping... It's great!

She's down to .5 liters on her nasal canula and she's doing really well on it. I don't think they'll be taking her off oxygen completely in the next day or anything but .5 liters is pretty darn good! Her bed temperature is pretty low. I forgot the temperature at which they start trying a crib but she must be pretty close. Her isolette doesn't even feel warm when I put my hands in there anymore! And here's the big one for me. She's nursing! They had told me they would start her on the bottle only but I asked yesterday and the nurse practitioner put in the order to let Chloe nurse once a day. And she's great at it! Her full feeding is 1 oz and she got over a half oz today before tiring out (we know because we weighed her before and after). But then after we weighed her she wanted to go in for more so I let her. I must say, hearing Chloe gulp while nursing made me downright giddy! She's being such a big girl!

And speaking of big girl. She's up to a whopping 3lb 11oz!

Chloe is 15 weeks (3 1/2 months) old today.
Tomorrow is her due date.

Day 102 - Oh Crap!

We're doing really well. Don't be fooled by my title. I went to visit Chloe yesterday while Solana was at school (yes, the "schedule" is already out the window - Michigan kinda screwed that up). Anyway, while I was there one of the neonatologists stopped to look at Chloe. He hadn't seen her since her return. While examining her he asked, "[Tell me again.] How old is she?" I blurted out, "29 weeks." This is the second time in a week that I've shaved 10 weeks off her gestational age and...WAS BELIEVED! She is soooo tiny! He nodded at 29 weeks and thought for a moment. I quickly corrected myself. "Oh wait! She's THIRTY-nine weeks!" His eyes bulged and he asked, "Has she taken a bottle?" I'm thinking, "Uh, are you kidding me? She only JUST got off the vent and started tolerating full feeds!" But I answer, "No." He then talks crazy talk. "Let's get her eating so she can go home. She may have to go home with some oxygen but I assume that's ok with you..." Hahahahahaha! Wait. He's serious. We're talking two weeks (no promises) if all goes well people!!!

You were right! It feels like (even though I know it's not true) they suddenly realized how "old" Chloe is and decided to kick her out of the NICU! She's graduated to bolus feeds where all the food is poured into her feeding tube within a matter of a few minutes and she's tolerated that well today. They're probably feeding her with a bottle right now for all I know! I stopped by the hospital last night to practice some non-nutritive sucking. (I drained my milk factory and then let her practice on me.) She did great! Of course, she only gave a few good sucks but she seemed to know what to do and didn't mind at all. I really wanted to get her successful at breastfeeding first but the lactation consultant says they have good success with breastfeeding even though they get their babies onto the bottle first. Plus, it would delay her homecoming if we make her breastfeed first, and they really want to get her home soon! Like I'm going to argue with that!

I spoke with the nurse practitioner today about Chloe's small size. She's WAY under the growth curve. Heck, she's not even 4 pounds, yet! She says that Chloe's a lot smaller than babies at her gestational age but she's "mature" so they know she can do what she needs to do to go home. Her growth curve is absolutely below the norm but at least it's a curve and not a horizontal line. Chloe just takes things at her own pace.

When I got home last night from the hospital Dave was shopping online for premie diapers and air purifiers. (He's such a planner!) Then he asked me if I have a plan for having Chloe at home and keeping an eye on her. What? I can't just leave her in the room sleeping while I clean house? Crap! I am so screwed! Plus, check out Chloe's bedroom. Can you tell we weren't expecting her home any time soon? At least she won't be staying in there for a while....

We actually do have a place for her to sleep...

Day 100 - Back Home

I can't believe Chloe is already 100 days old! She's getting old! :-)

We're all back home safe and sound. We're so happy that she's well and back to Dayton so quickly! She's tucked back into an isolette sleeping away. They aren't wasting any time moving her forward, either. They already decreased the temperature in her isolette and changed her feedings so that she gets her whole feeding over just one hour (instead of two).