04.27.12 A Very Good Day!

Today Amelya got her chest tube pulled and forced air removed after a good xray and blood gas! It appears miss is on the way to heal! I stayed a good bit of the day getting errands done and reading and being creepy and staring at her. I am so proud of her, now we have to work on feedings. Speaking of which, I started reglan... Gotta make Boobie juice! It has a side effect of depression, but if I can handle this, reglan doesn't have poop on me! I wish I could use the tea too, but it is a big no on cardiac babies :( Well, short and sweet that ends the day. I can't wait to bring her home (and I'm way nervous). 

Looking at the upside.... Desperate to do so.

Yesterday was better than today for me and great for Amelya and I wouldn't have it any other way.... Amelya is now getting regular feeds (yey) but I'm still struggling with milk and I can't do ANY tea or fenu stuff with her being a heart baby (boo) but I'm pumping every 2 to 3 except at night, I wait for 5. Amelya's chest looks like holy cow better but she is insistant on laying on her right side unless medicated and turned on her left. She cries on her left but we gotta get air flow! At least she is getting 15 minutes on that side. She sleeps like her daddy too, one eye open, hand in the air and grunting. Daddy had to leave for work today which sent Mommy into a tirade if tears because we haven't been seperated since we met. Only God can (if you believe in God or fate or whatnot) put two people togeather like this. Seriously I never thought I would have these moments in my life and now, here it is (up and down as it is).

Side note/ ADD moment: My grandparents saw Amelya for the first time today and my father this past weekend. She is so loved! :)

Thank you all for everything once again, my words cannot express how much everything anyone has done or said.

04/26/12 Fustration

Yesterday I was planning to post for 4/25 until stuff kinda went to poo. I woke up to a room change from staff only to find out later we didn't need to move and at that point I wasn't re-moving... Then we went to see my beautiful girl later than usual. I was told she was doing well and after a couple steroid doses he could plan on extubation (breathing tube removal) by the pm. I could and would not be present for that- I can handle most stuff but extubation? Nope. At 4:30 she was extubated- we didn't get to see her for another hour related to an OR case. (Yey for another fixed baby!) I wasn't real happy with that because I am scared of extubation and that right lung- I realize it looks better but the fragility of it all (uncertainty and unknown change is NOT easy for me) puts me on edge. Forward to 11:30 pm (yes, I am the nurse who is a pain for a patient and now it is my child its like walking on a wire) and Amelya is doing very well off the ventilator and on forced humidified air... She looks good but now we have more post op hurdles which looks like another week (minimally) of care in the pcicu (which is fine) but I hope she meets them! My little fighter. I need to take some notes, I want to bond so badly and hold her but her war wound looks so painful that I actually turned down giving her a bath. I feel horrible. I also think I overstimulated her yesterday when she got hiccups after I went on a touching rampage. I wish I could do the right thing, it is just this is not my area and I'm fustrated as a Mommy and a nurse-  it is just that I love her so much. I love her, my husband and the way things are looking, I need to go back to good ol trusting and having faith but it is hard!

On another note, some friends of ours (mutual powerlifters Ambre Tarpley and her Mom (ok, mom doesn't powerlift) and Laura Phelps Sweatt) sent 2 outfits for Miss Priss and some antibacterial goodies (yes, I'm that mom that will make you wash your hands and you cannot of smoked or presently be smoking around her. Thank you all! Made a fustrating day better. :) 

Questions... (04/25/2012)

I really haven't posted as of late because Michael has at schultzestrength.blogspot.com - since I blogged however Amelya has had her surgery with Coarctation of the Aorta and is ventilated and attempting to come off the ventilator. Yesterday was a little touch and go for her as her right lobe has more fluid than it should (opacity) and she failed her first cpap test to come off the ventilator. She has to have two successful cpap trials to come off. This is so fustrating to see her on a ventilator and I can't help but feel like I can't do crap to help her. I don't know their ventilator so I can't suction and she hurts with the spot her incision is... I wanna scream... So instead I ask questions. A ton about what numbers to watch, when to give meds based upon no physical or verbal signs (and blood pressures being based off a newly fixed heart) for pain. I wish I could hold her.... I wanna hold her and make it all better... Instead I have to tell myself she won't remember any of this.

04/20 - 04/21 Update

I haven't updated in the past two days related to Amelya being somewhat stable and spending a lot of time trying to be a Mommy (diaper changes and touch and of course pumping). Amelya is chunking up somewhat but I know its because they all screw up her feeds (yes, I caught it AGAIN)... I just keep looking over their shoulders in case it is something else. I really like Jody, Erin and Marissa thus far, great nurses. Tonight Denise and Brent came down with our things (whew!) And some friends Erin and Mandy (bless them both) got us extra needed things (Erin and Jason got us a bear that plays for 20 minutes and baby einstien cd and Mandy some tea to help with milk and a big tj maxx bag for carrying supplies back and forth from the hospital). I found out today the baby across the hall from us in the greenville nicu went home today.... I am glad my prayers for him might of worked towards his recovery, now if we can keep working on praying for other babies (I am bad about being too general). I am so thankful everyday for all my friends and family and most of all MY family. I never thought I would have any of this much less all the support.

I guess that ends the ramble :)

Finally...

Michael pulled me out of bed about 1700 after laughing and watching cable tv (a luxury we don't afford because the gym is more entertaining) for a bit. We apparently came at the right time. Dr. Bradley had us sign consents for surgery, this after hearing 2 babies were sent back to nnicu. I am very excited and nervous. We are only getting the coarctation fixed, but it is a start. I think we are following the right steps and Michael and myself are becoming more faithful and open about God and us, which I have never had before.... We are not turning into bible thumpers/pushers, just (for me) being more reliant (I think that's the word I'm looking for).

Well, no big changes for Amelya, the move to lasix (water pill) has helped with her infiltrated (cloudy, wet) lungs and I'm happy, for now... I hope they clear pretty well until surgical time.

That is pretty much it, Denise and Brent come this weekend... Hopefully I can make it over the bridge...

04.18.12 A cholorahexidine bath...

I did good until about one pm last night, when I watched another baby get bathed for surgery that just came in. I'm just so tired of waiting, Amelya didn't do anything wrong and because she isn't dying we wait. I have to stop blogging I'm getting too upset. I'll post tomorrow.

My husband and our family....

Today was busy. Michael vomited today and didn't feel well and this stopped him from seeing our sweet girl so I pumped, visited, pumped and repeated. I'm having a little trouble with production and have been stressed and don't like narcotics so the doctor prescribed zoloft.... The issue there is I can't go to a theraputic dose (50mg) without feeling like a zombie. The breastmilk crossover is a lot less with zoloft so I'm gonna try it. On a different note we are hearing all kinds of surgical dates and we might of jumped the gun by an hour or more, but Michael was going to leave to go back to work tonight and as he visited to say goodbye we got Thursday and Friday as surgical go dates so he ended up staying. I have never been so scared in my life. I literally had a breakdown on the phone because he was leaving. I know people judge me or think that I'm not nice or that I will hurt him but trust me on this: Michael and Amelya are my world. I can't be without either, ever. I will do what it takes to be the best wife and mother and I have no doubt that even after only a year that I know he is my soulmate.

Clinically:

Bili levels appear stable, we got up to 8ml an hour of food but that was a goof and now its every 3 through her nose tube. Her breathing is more labored which worries me and the tpn I've been assured is ok. Her right arm infiltrate (iv contrast in the arm/skin) is looking better. The breathing is the biggest issue right now and her whole body moves when she does it :(

She is fiesty so I'm told and that is ok, it just means she will make it and do things when it gets tough, but I also hope she has daddy's hard but soft (if that makes sense) demeanor.

I call the apartment today to see where we stand and if its gonna cost an arm and leg to move.

Decisions, decisions....

Today was a good day until 9pm and God must of had his hand in that because I slept for a good hour beside my husband somewhat snuggling. I was pumping and heading to the hospital when Michaels Mom tells me Pam is NOT our nurse, it is some lady named Cindy. Now I understand Grandmas and Mommies are over zealous but this kinda set me up for a long night of playing Momma Bear... Short and sweet it ended up ok and as an added bonus we were transferred to pediatric cardiac intensive care unit in prep for surgery!

Amelya clinically:

We are waiting on a bili level (I am 100 percent sure she will be on a light again) and a bmp (labs to show if organs are functioning) as well as the angio done this pm. She has a right arm iv that infiltrated with contrast so we are watching that. She has periods of tackypnea ongoing. We spoke to the resident pcicu md and it has really set me back to big bat crazy with the reason being her right aortic valve and how "special" it is. They say we don't know if she will be opened by her sternum or maybe by her ribs, they say she now may need two surgeries. They say her left heart lags. I don't understand then why we sat around for a week. She is up to 8 lbs however and maybe that is why? I don't know. I'm so confused and I just want to take my heart out and give it to her. I would give anything, anything to fix this. On a different note (hello adhd) she says it may NOT be genetic (my michael has aortic distention and some right ventricle thickness), which is great, but they send off genetic labs on all cardiac babies so maybe that will give me some insight? It doesn't matter, this whole night tonight made us make two BIG decisions: NO more kids. Period. We may break the lease (not sure how that will go over) and move in with my family for a couple months if a second surgery is imminent.

I better stop, my milk supply is decreasing as I continue to stress and not sleep....

Good night... Keep the faith and please pray for us. 

04/16/2012 Attempts to relax and news!

So I could not post until now because I was waaaaay to anxious to do it. My mom (Carmie) got a beautiful hotel in Mt. Pleasent with AC and a big bed. I never slept there, after we crossed cooper river I started feeling vomity and crying... Being here is what I want. I felt bad and I tried but Damn, she is in an isolete and I'm in a ritzy hotel? Muckenfuss that. I did however get a fan and goodies (who would think toenail clippers and pens would be so awesome!!!!) from her and my sister however and that helped a lot.

Michael's mom and sister plan on staying a bit and are helping around the Ronald mcdonald house and with odds and ends we didn't expect to need (a cheap v neck t shirt for me, hairbows, femine things and cokes, etc...)

Yesterday Amelya had a very good day and I got to do a whole hour of skin to skin! I was totally stoked! It is so different to hold her and feel her little body moving. Dad got a lot of pictures and later the Cardiologist came in and gave us an anticipated surgical date of 04/18 without a time. The md also said Dr. Bradley had better hopes for her valve. I am kinda hopeful, but the last time I was relieved we were flown to musc.

So to sum it up on a scale of bat crap crazy to baby bat crazy I was baby bat yesterday.... Let us see how I do today and the rest of today... 

The Beginning

I will have to log this over a matter of time...

Amelya was brought into this world on July 24, 2011 by two parents who wanted children a year later after they were married but as luck would have it, or rather God, the egg came first... haha see what I did there? We were so happy and had nothing to do but save.. and save we did after we got married in November of 2011. We were going to wait for that also, but insurance now a days is terrible and we wanted our child born with good care and my job only offers supplemental insurance and no pto or vacation, which was great until Miss Amleya came along.

Confirmation:

August 15, 2011

Well, well apparently someone had been lifting too heavy and messed up her... ohhhhh WAIT! After four tests, I made a visit to the ob and a baby was gonna be here in 9 months!!!

No worries:

At 18 weeks our ultrasound tech said she could tell the sex (a girl) but her heart was too small to see and maybe I should come back at 22 weeks. I was never worried or thought anything different and no did anyone else.

At 22 weeks our ultrasound tech said her RV (right ventricle) looked a little big and she would mention it to my then OB Dr. Heditman. He looked and all I remember him saying was we needed to have a referrel to a maternal fetal specialist.

At 24 weeks I was in to see Dr. Greig, the MFM doctor and we got a basic and generic report with a monthly follow up and a possible cardiac refferral. I started going nurse crazt and looked up a ton online and played the waiting game.

At 28 weeks I was in to see Dr. Greig and he called in Dr. Benjamin Horne (Greenville, SC only has five cardiac doctors but they do NOT preform surgery). We got confirmation on this very date that there were 2 VSD, Coarctation of the Aorta and I was to follow up pretty regulary with Dr. Greig. I saw Dr. Heidtman later that week and he suggested that I change doctors to someone else because Amleya would need a level two trauma. I agreed and changed to Dr. Gower, who was also the only doctors out of three who I wanted and would accept a heart doctor.

At 32 weeks I was told that Amelya's heart was a POSSIBLE Coarctation of the Aorta, small LV and Aortic Stenosis... We were told surgery was not for sure and that if I felt better we could go to MUSC and deliver at 39 weeks or wait it out until 40 weeks. We decided to wait it out to let her heart grow and maybe things would even themselves out because after all, surgery was a POSSIBILITY.

At 39 weeks my ob wanted to induce, the maternal fetal doctor agreed and I went in on April 8th to be induced using cervadil.


To be continued.....

Makeup remover $2000

Michael told me I wouldn't cry today. It seems like all I do is cry... Michael's mom took me out and it was maybe 20 minutes away but I cried and cried and just wanted to be held by my husband. I did however pray outloud for the first time in front of other people... I don't know maybe that is good. I feel bad for Michael because while using my makeup remover (tears) people look at him like he has beaten me, which he has never or would never. It was all triggered by other peoples kids.... I honestly (as bad as this is) hate other people. I want my baby girl with me. I want to hold her. I want to feed her. I want to hurt them. It is terrible, I know but it is how I feel. I also feel like I'm in a no win area of life with everything. I need help but I am getting a free place to stay so I need to shut the heck up, but then I need breast feeding stuff and meal food... I wanna kill my job, no fmla, no vacation, no pto, how can they do this??? How selfish, it seems so wrong, but then again it is a job. I even feel bad (and cry, again)  when we ask to turn down the air to below 78 because it is free but I don't want to ask my mom, his mom and I can't expect my best friend on her birthday weekend to drop it all and ask for her to drive here when it is just a stupid fan!!!! I guess that is my hormonal rant. I need to lift and quit being a big baby, I had her and I knew what I was doing 9 months ago.

Amelya was the most stable today and I really like her nurse. I hope we get her tomorrow. No big changes except for double light therapy because her bili is so high and 5ml of food every 3 hours to help combat the bili... So Amelya gets booooobie juice! It is all fed though a nipple and squirted in and she gobbles it up and gets hiccups! It is sooooo cute. Michael woke up specifically to feed her last night. I couldn't of chosen a better father. He is so awesome.

Some of my family (mom, sister) (as well as michaels mom, sister)  is also down and so I got the wipes to clean the pump when I'm at the hospital, a box to keep her things in, pictures (to help make Boobie juice, and no not porn!), a cross for her bed, some cookies, a new t shirt and medicine for Michaels allergies (which are horrible and he can't see her if he is congested) and some smell good soap (luxury, but I feel better with smelly goods) which really helped things since we were NOT planning on a month here. :( 

On a more positive note, stay tuned we may have surgery the next couple days, keep prayers coming and we are so thankful for everything : )

04/13/12 Fire and Water

Amist Amelya's journey to being a healthy baby girl I have decided to blog about her journey. I have to start amist everything, but will play catch up once things get to a stopping or at least slowing point.

Fire...

Today was overly emotional as has everything since the 9th when I first laid eyes on my beautiful baby. Michael and I are an overly strong unit physically and mentally and I think alot of people misinterpret the strength we have as a couple... since Amelya's birth Michael has been the person to make me eat, make me take care of myself and make me slow the heck down. Michael has also encouraged my journey to get closer with God. What kind of man can do that and be a father??? My husband!!!

The morning started off with neonate report. This is the second report I have attended and it hold merit because all the residents, attendings and family practitioners gather around and talk her case. Amelya had a renal, bladder and a head ultrasound which all turned out negative and I am pleased with that given her heart condition. Amelya as also been on TPN (nutrition though the vein) for two days now and is tolerating it and holding her own however her potassium is slightly decreased and for this reason she now has a banana bag and lipids (still like TPN). I won't be coy, but I am pretty upfront not liking this TPN with the constant side effects long term. The neonates think the TPN will NOT be long term but I remain hesitant even with constant labs (bmp). Amelya was also put under a bili light for jaundice because of the ongoing flux of her levels... I was kind of happy but she will remain very fluid restricted because of her heart (not abnormal). At this point I was told to wait on the big guns for a surgical date (cardiology docs). The neonates also decided to place a PICC (I am totally ok with that) for use in the surgery and for other labs- she has a UVA (umbilical iv) that looks ok, but this will help to go with a stronger TPN source should that be a need.

The afternoon arrived and we spoke to the cardiology DOCTOR not the surgon. The sum of her diagnosis is that she has coarctation of the aorta but the length of the narrowing is alot worse. The LV (left ventrcile) has fixed itself.... NOW the biggest fire I have dealt with.

Amelya has a really small and bad aortic valve. We are told we are unsure of the procedure to deal with it... we also dont know the fix date. I am told to plan on a month (including post op).

Every part of my insides really wants a new heart. I cant really outweigh the pros and the cons because I do not get that choice. I am happy she is being fixed but I am sad she has to get all of this done. I feel like I am getting to the point where shutting down is a better option then being here because everytime I turn around I hear another issue... it is fustrating and annoying and I do not think there is enough Xanax to help me though this. I think all this swelling and whatnot is not helping matters either.


Water:

Michael and I have decided to play all things though this blog. We also decided that from now on she will only be held by us. In addition we have decided to place more faith in God and how he works and how to be better at the whole faith and trust. Most importantly as a couple we have decided that for one hour a day we will be togeather to support and love one another ALONE... we will use the time to nap, talk about Amelya, eat, make decisions about how to proceed and how the day went thus far. These are small decisions, but for now it kind of puts some of the fires out....


I am super tired and will return to the blog later but for now here is a small update.