Tuesday, October 26, 2010

Maggie Update

Maggie is HOME!!

She is fully weaned off all medication, eating great and is currently tube and line free!!

They discharged her yesterday afternoon with a clean bill of health!

We were instructed to keep her out of public places for the next 6 to 8 weeks, so life at home will still be a juggle but we are so happy we have finally gotten her home!

This is our last update!

Wednesday, October 20, 2010

Maggie Update

CURRENT GOAL: Work on feeding and get volumes up orally, Wean off Morphine and then wean off Versed at home

PROGRESS: There is a light at the end of the tunnel!

Meds-Maggie has been coping okay with the Morphine wean, she only has two more weans to go!!! The next one will be changing when she gets her morphine from every 12 hrs to every 24hrs. They attempted to change this yesterday but her withdrawals symptoms shot up like crazy so they went ahead and kept to the 12hr schedule. They will re-attempt tomorrow. After the 24 hr wean, the next step is off!! YAY!!

Feeding- Maggie is excelling, the lactation consultant called her "Brilliant"! We went from doing 3 bottles a day and me attempting breast, to today where everything changed....4 breastfeeds a day, with the nursing staff doing bottle when I am not here, the NG Tube is out of her nose for the time being. If she does well over the next couple days... NO MORE TUBE FEEDING!!!! She has been doing awesome with the breastfeeding and my nipples are feeling it... I thought they would be conditioned with all the pumping but I feel a bit sore. It's an absolute dream!

Our Dr. today said that maybe Sunday we would be going home.... this of course all depends on Maggie and how she continues to do on weaning. We are very hopeful that this is our last week living the hospital life.

Saturday, October 16, 2010

Maggie Update

CURRENT GOAL: She is working on feeding properly, going down on oxygen, and getting weined off Morphine and Versed.

PROGRESS: Happy Birthday to Maggie she is 1 month old today! We were transferred this week to IU-Hospital, which is just down the block from Riley Chilidren's Hospital. Our little girl is no longer a high risk case and can now hang out with less sick babies in a Special Care Unit! The new digs are nice, it's a newer facility so it is more asthetically pleasing to the eye;t he staff more layed back; the food still not tasty for Mommy!

Meds-Her Central line has been gone for about a week now, and she is fairing well with her wean. The staff has toyed around with it a little to see if she can take a more aggressive approach... to which Maggie said NO to. So they went back to her schedule I had mentioned in my last update. Yesterday, our new Dr. approached me about trying a different method. She thought that maybe we could be a little more aggressive with the Morphine wean, but not wean her off versed until we are home. That way we are only weaning one drug at a time, which could help her get home faster! I like the idea, and so we are trying it out.

Feeding- Well this continues to be an adventure, as of the beginning of this past week Speech had re-evaluated both breast and bottle, and we are still on the bottle, she is still aspirating on the breast. Yesterday, we had issues with her aspirating on the bottle. So our new Dr. and our new lactation consultant and I discussed some options... The Dr. at IU is willing to have her just have oral feeds 3 times a day... it can be breast or bottle. Lactation wants me to try breast with a nipple shield to see if that helps slow the flow of milk a little bit, a long with some different holding positions. So this weekend I am tasked with non nutritive breast feeding with the new holds and skin to skin time and then Monday we are going to try breastfeeding with a nipple shield. Maggie has struggled with getting her volumes up so Seana and I will be trained on NG Tube placement and feeding so that she can go home with a feeding tube if need be.

Oxygen-Good Bye Nasal Canula, HELLO room air! On Tuesday this week Maggie decided she was done with the oxygen and pulled her nasal canula off, her stats stayed stable so the staff decided to leave it off and see how she did....SHE DID GREAT! This was also the day of her feeding evaluation so they decided to put it back on so that they weren't affecting one with the other... after both her evaluations were done (one was on tuesday and one was on wednesday) they took off her nasal canula and she has been breathing with no assistance ever since!! YAY!!! Goal Accomplished!

NEW GOAL: Work on feeding and get volumes up orally, Wean off Morphine and then wean off Versed at home

Tuesday, October 12, 2010

4 Weeks ago...

Well four weeks ago tonight I went into labor. I never imagined going down the path we are currently on.

I am so thankful, and so in love with Maggie. Her health has improved by leaps and bounds, when I look at her I forget how sick she was and how she still is healing.

Looking back the last four weeks have been very hard. It's hard to not be living the reality I had imagined for the past 9 months. It hurts that we didn't experience the birth we had envisioned. I had wanted a waterbirth at home with lots of bonding time with our newborn baby. Instead I experienced a hospital c-section with 45 minutes of being able to look at my baby and touch her but not hold her before she was flown to another hospital. I then spent 2 days in a different hospital without seeing her. Once released, my visits with her were hard, all I wanted was to hold her and love on her and I could only look at her and occasionally touch her, I had to wait a week before I could hold her. Seeing her everyday on all those machines broke my heart time and time again.

This experience was far from what I wanted, and I feel robbed, I feel a sense of loss when I think about it. I think I just want to say that out loud. In my heart I know Maggie deserved a much better start at life than what she has gotten. I want to give her warmth, comfort, love and security, she should have gotten that immediately after being born. Im sorry that she was poked and prodded instead.

Even now, everyday is a challenge as we wait for her to heal and progress to a state that she can come home with us and thrive. The commute is wearing, as is the hospital itself. There is no escaping the worry and the wondering. But one look at Maggie and I know it is all worth it.

Im so happy that she can now be held, and I want to hold her all the time, I feel like all the time I spend holding her now makes up for all the time in that first week I couldn't hold her.

Thursday, October 7, 2010

It's like staying away from free chocolate

So I am sick. It is not a huge surprise since I have been running myself ragged for three weeks. I mean I can only go without sleep, eating yucky food and being around dirty hospital for so long before my body forces me into a time out. I have never missed a Dr. appointment, I held my daughter the minute she was born, I have been at the hospital every day since and now .... now I am at home by myself. Which is where I should be because the last thing I want is to get my Queen Bean sick.

I am sure I will find something useful to do in between napping and blowing my nose. All I know is I can't wait until I am better and can hold my sweet girl again. And hug Melissa without both of us holding our breaths. ;)

Wednesday, October 6, 2010

Maggie Update

CURRENT GOAL: She is working on feeding properly, going down on oxygen, and getting weined off Morphine and Versed.

PROGRESS: Maggie is still doing awesome!

Meds-The bigs news is that they changed her drug intake from IV to oral! This means that she doesn't need her central line IV anymore... YAY for less tubes!!!!! They did the switch to oral a few days ago and monitored how she handled the change. Yesterday they weined her off them for the first time since changing to oral meds. She seemed to be fine with it yesterday, we will see how she is managing today! Her central line was scheduled to be taken out last night so hopefully when I get there today this will be done.

Feeding- She is sucking, swallowinig and breathing on the breast, and she has taken to it like a champ, however, the hospital feels that she is aspirating (breathing in some of the milk) during the feeds. Her respiratory rate spikes from time to time during her feeding and usually at the rate she is breathing aspiration is very likely. So they have ordered that we switch to bottle with my breastmilk thickened by rice so she can practice. The Dr has discussed this with us and is working towards our goal of exclusively breastfeeding, but we have to get Maggie past this hump. So we will bottle feed her the thickened milk, once she gets to taking her full feeding this way with no respiratory issues, we will thin the milk and move back to breast.

Oxygen-Over the weekend they made a change to her oxygen intake. She has been unable to go down to room air, so they changed the strategy. They have her on a 100% oxygen with a 1/2 liter of flow with the intention of shutting off the flow. The thought being that we can possibly take her home sitll on oxygen if they haven't been able to wein her off by the time the meds are weined. The Dr. is confident this is not going to be the scenario as we still have 3 weeks of drug weining scheduled out. During this time thy are still going to work on weining her off the oxygen its just a different way of approaching it.

THEY GAVE US A DATE! The Dr let us know yesterday that her current tentative discharge date is October 25th! Which seems like forever away... but I know it will go by fast! The Dr also feels that Maggie has been handling the weining off the medication really well, and its possible that if they can be a little more aggressive and Maggie handles it well our discharge date will be sooner!

Monday, October 4, 2010

Oh the carbon footprint!

I am very thankful that I live so close to one of the top 5 Children's Hospitals in the nation, the progress Maggie shows everyday is evidence of their abilities! Well that and a lot of prayers and positive thoughts from all around the country!!

I have to say, I have been enjoying my time with my baby girl even though we hang out in sterile one time use land. Hospitals have to be the biggest worst culprit of creating landfills full of recyclable products.... among other things.

I am by no means the greenest of individuals, but I try hard to work at being ecoconscious and well, I cringe a lot in the NICU!

They don't recycle anything, namely PLASTIC! Which could easily be recycled.

Everything, is used once and then tossed.

They have a "No hitting the floor policy"... which applies to everything! I dropped a pillow on the floor, they took the cover off and threw it into the linens laundry and then threw away the PILLOW! At least they saved the cover SHEESH!

The irony is, I bought cloth diapers and cloth wipes, to minimize our impact on the environment... I will of course be using them once we get home... as well as trying to brainstorm other ways I can lessen our little miracle's impact on the planet.

I thought restaurants were horrible with the styrofoam containers... not even close!