I have pictures....

but to get them on here, I need to remember where I put the cord to the camera that connects to the computer so I can get the pics off the camera. At this time, I have no idea where the heck I put that thing. Don't you hate that? I still have pregnant brain. Someone told me that this would go away...but we're going on 11 weeks post partum, and I'm lucky if I remember the keys to the car. SUCH FUN.

Okay so this past week was a big one. First, I got Mastitis. If you don't know what this is...google it. I think there are some men who read this who may not want to know, so I won't go into details. There may also be some nursing mothers reading this that I don't want to scare the crap out of. I will tell you that the only other time I felt that bad was after I had Elsie. Ryan helped diagnose me and my wonderful OBGYN called in a prescription for me on Christmas Eve Eve. I've been on antibiotics for 72 hours and am starting to feel like myself.

Secondly, Elsie is in an open crib, off oxygen, and taking six feedings (out of eight) by mouth. She loves the open crib and has been holding her temperature well. Yesterday she was quite congested from having tubes in her nose for so long, and now suddenly, no oxygen blowing down her nostrils. She is keeping her blood oxygenation levels up beautifully. I am nursing her three times a day and the nurses are giving her bottles when I am not there at night.

Now, before you go all, "why are you letting them give bottles?" This change happened on Wednesday in the middle of my sickness. I didn't want to hold Elsie back from progress just because I couldn't be there to nurse. And, it will help her get home more quickly if she can demonstrate that she can take more feedings by mouth. She is continuing to nurse well, and take my milk from the bottle beautifully.

She is definitely making progress. What else? Oh! She weighs 4 lbs 11 oz!

Love Y'all,
Ellen

The Drive to get out of the NICU

For those of you keeping track; this Wednesday is week 10 in the NICU. Tomorrow, the last of the babies admitted the same week as Elsie, is being discharged. This is excellent for the baby and her family...they have faced and over come many challenges. At the last NICU support group meeting her mother asked "is anyone else still here (meaning the NICU)?" I was the only one to raise my hand. In response she said, "then you understand the drive to get out of the NICU." Yes ma'm, I totally do. It is bittersweet to see other children progress more quickly than Elsie. My mother and the nurses at the NICU remind me that they didn't start out as small as Elsie did. And she will get to come home. One day.

At our NICU support group Christmas Party another parent told me she actually contemplated simply walking out with her twin boys. Thinking, rationalizing to herself, "they can breastfeed. It's not like they will starve. Legally, what will they do if I just leave with them?" Looking back she realizes what a completely ridiculous thought this is to have. The truth is that is exactly where I'm "at." That is how crazy the emotions can make you; and how the drive to "get out" can almost consume you. I am thankful to hear NICU graduate parents and their stories. They assure me that I'm not crazy, at least, not yet.

At the same time (God please do not let me jinx this by putting this out there on the Internet. Love, Ellen); I feel like we are turing a corner. Elsie finally got the hang of breast feeding on Friday. She is now nursing twice a day. For those of you who tried and were not successful nursing. I hear you. We've been "practicing" for almost four weeks now. Her cannula has been turned down to one liter and she is doing well. They may turn her down to half a liter in a few days if she continues to have good stats.

She is also 4 lbs 3 oz. Still in an isolette. They want to be sure she has feeding down, can consistently put on weight, and maintain her temperature before they move her to an open crib. The idea being make sure she can do it all on her own before you actually make her do it all on her own in an open crib. She will burn calories doing everything by herself so they need to make sure she can handle nursing well so she continues to put on weight.

We are making progress. I know we are. It's just not as quickly as I would have liked. As I've said on here before. She's like her Daddy. She does what she wants when she wants. Not a minute sooner. Sheesh.

Love Y'all,
Ellen

And we're back

It's been seven days since my last post. Sorry guys. I got busy....

So in the last seven days Fancy and Papa Jim have visited, we got a new puppy, and had a virtual baby shower. As far as the puppy goes; to those of you who just said "WHAT?! Are you nuts Ellen?" (like my mother did). The answer is yes. As I told Fancy, we like to keep the crazy meter running at about an eight (out of ten) in this house. So the newest member of The Bailey Family is Beatrix Bailey, born October 17. She is a cocoa colored Shih Tzu, and also a spitfire. She and Elsie will be great friends one day. Rudy is starting to play with her, and I am trying to keep her away from the pool.

We had a great visit with Fancy and Jim. The nursery is finished thanks to Jim putting up the curtains and hanging the artwork. I will post pics. I would also like to point out this was a group effort. Ryan and I painted the walls; Ryan, my Dad and Grahammy put the crib together; Jim put up the curtains and artwork with input from Fancy. I love that. Thank you all. We couldn't have done it without y'all!

Elsie is doing well. She did not gain much weight last week. This is because she had been nursing twice a day and is not able to nurse strong enough to express any milk. So we are teaching her with a supplemental nursing system (SNS) and she is continuing to get feedings through her nose tube. We did this at her 5 pm feeding yesterday and she gained 40 grams. So a few more days and then we will try again with no (SNS) and/or introduce a bottle.

Currently she is 1740 grams...so we are hoping she gets out of the isolette in the next week or so. Can you believe that? Progress, people.

Love Y'all,

Ellen

Thank you, Ryan's workplace

Ryan and I went to his company Christmas party on Saturday night and had wonderful time. We saw a lot of people we hadn't seen in a long time. I will have to post the official photo later. The picture people posed us and I swear it looks like a Prom picture. It is hysterical. We will not be using it as our Christmas card this year, sorry folks.

The party was awesome. Ryan and I look forward to it each year, and were not disappointed. I just wanted to say thank you to the employees and their families. So many of you came up to us to get a report on Elsie, to say hang in there, and to offer prayer. We really appreciate every one's kind words and prayers. The prayers are working, please continue. We thank God everyday that Ryan is fortunate enough to work for such a caring company. Thank you!

Elsie is on the back end of a cycle of congestion so maybe the next few days will be good. We hope so. Fancy and Papa Jim are coming to visit this weekend, so she needs to be good! :) Elsie continues to nurse well. She knows what she needs to be doing (suck, swallow, breathe) but when her nose is so congested she cannot breathe, it makes the process very frustrating for her. It is encouraging that she is able to latch on, suck for a few minutes, and not have any episodes. As she continues to grow we hope she has more good days.

Love Y'all,
Ellen

Need to post...but really it's just more of the same

Elsie is doing well. She nursed (intermittently) for 19 minutes this morning. Her nurse and I deduced that her congestion must have been making her feel bad, and thus her refusal to nurse the day before. As my Mama said "you can't make a baby eat." True. Even more so for one with a congested nose that has multiple tubes up said nose. Bless her heart.

So feeding tube has been moved back to her mouth to relieve the swollen nasal passages. Her cannula has been bumped back up to 2 liters to make sure the air can blow past the congestion in her nose. She can nurse with the feeding tube in her mouth, but according to the occupational therapist, this can be deceiving. It may look like she is tolerating nursing well, but doing so with the feeding tube down her throat can cause issues later (who would have ever thought?). To avoid this we may lay off on nursing for a few days until the nasal passages are not as swollen, and the feeding tube can go down her nose. Something about the swallowing, with the tube in their throat can lead to developmental issues down the road.

So we are kind of in a cycle. Every few days Elsie gets really congested. She doesn't feel well, so then she doesn't want to nurse. To help her breathe they bump up the cannula. What does this do? Dry her nasal passages out even more...which does what? Causes congestion. The doctor says that this should be alleviated when her nasal passages grow a little larger.

A sentence I never in a million years expected to type: Please pray that my daughter's nasal passages grow as she gains weight, so she won't be so stuffy and we can break this cycle.

Love Y'all,
Ellen

Level 2!

Elsie is officially "Level 2" in the NICU. This doesn't mean much to people outside the NICU. But today, on the dry erase board in the NICU lobby, Elsie had a two by her name instead of a three. Level 3 is for the sick babies. Elsie is not sick (relatively) anymore...just what they call a 'feeder grower.' For preemies and their parents, this is a big step!

She is starting to show her personality. This evening while getting mad during nursing, she smiled and even laughed a little bit. I don't want to give details (TMI, for those men who read this), but she is her father's daughter. Just letting us know that she will do what she wants to do when SHE is ready to do it. Not a minute sooner. Sound like anyone else we know?

Elsie has a mean case of diaper rash. When her nurse and I were discussing if it looked like it was getting better vs. worse; she said "well, it's not bleeding." OMG. I didn't even know diaper rash could bleed. We'll end on that note...

Love Y'all,

Ellen

"She's a Small Turkey"

Elsie is 3lbs 3 oz! Since my last post the major change is she is now breastfeeding twice a day. Right now she isn't able to get much milk on her own (she's still so small) so we are really just practicing. This is called 'non-nutritive' breast feeding in the NICU. Elsie is doing well. She seems to be able to coordinate getting the milk, continuing to breathe, and swallowing. Such a big girl. Until she is able to get enough milk on her own she will continue to receive milk through her feeding tube. She is getting about an ounce every three hours.

We had a great Thanksgiving with my family. Everyone contributed to dinner on Thursday, and it turned out beautifully. If only the Hogs had won; it would have been a perfect weekend! :)

In other news...who knew putting together a crib would take so long? While my dad was here he and Ryan put together Elsie's crib. Since her room is on the small side we decided to get a crib and changing table combo. The changing table is built onto the end of the crib. It took my Dad, Ryan and Grahammy two and a half hours to put it together last Friday night.

So now we've got the room painted and the crib put together! Woo hoo. Both major items off my list.

Love Y'all,
Ellen