Sunday, October 28, 2012


So this storm coming is predicted to be really bad...   We have been declared in a state of emergency or whatever.   Friday, I declared my household in a State of Emergency.   It involves 2 daughters, a pair of scissors, and massive clumps of beautiful hair!!!!   That's what I get for taking a shower :/   ugh.   Well... it is all said and done, so now it is time to laugh about it.

Sophia did not regret it at all...Anastasia however said she wished she did not do it, and she asked me multiple times if her hair will grow back.

I asked the ladies at the salon to do what they can...Both of them had so many different "layers" and some as short as a centimeter.  I'm almost tempted to take Ana back and get a shorter cut.   But it is probably best to let some of it grow out first so she has better options.  

Cecilia has not fully returned to the same she was as our original first 3 weeks home.  She rarely is the happy baby that I got to know.  She loves her bath at least...

We were supposed to have a LONG day of doctor visits on Monday which all will probably be canceled due to the storm.  The first was to be a visit to GI for Cecilia.  She hates eating.  And she is mainly fed through her G-tube still.  Our new feeding schedule at least has her keeping all of her feeds down instead of projectile vomiting, but she no longer rests during any of them.  She is not comfortable... but mainly her continuous feeds at night bother her so much.  I wake up once a night to change out her formula (so the pump runs over 2x and the pausing gives her tummy a break), but I am going to try splitting it up into 3x.  Maybe this extra minutes it takes me to drag my sleepy self downstairs to prepare all of that will help.  I just got a text from Ana's dentist office that her appointment on Monday is canceled...the last appointment was for Cecilia's 4 month shots.   I really wanted to see her Pediatrician, so I hope out of all 3 that this one will not get canceled.   She has to come in after Nov. 1 for her Synagis shot, so either way she will see him at least once this week. 

She is tolerating tummy time more often, which I am excited for because it will help her build her strength.  We can do 5 minutes until she seems like she is in pain.  She does well if I am laying down and have her on me instead of the floor.  That usually will be about 10 minutes that she can handle.   I try to do this at least once a day, but sometimes doesn't happen because it is her least favorite thing to do in life. 

Some pics of Cecilia and her Aunt Emily:

Hopefully we will have a great Halloween.   Karl and his best friend are going to take the kids around the neighborhood (as long as the weather is good, that is...) 

Thursday, October 25, 2012

17th Week

Tomorrow Cecilia will be 17 weeks old ♥  (on Monday, officially 4 months old).  We have been struggling with Cecilia to tolerate her night continuous feeds, and she could not gain weight without those feeds.  Thankfully she has a new feeding schedule which so far is going wonderful.  She is still very cranky and crying all night long, but at least she is not vomiting everything up.  We will see a new doctor on Monday to see if they can give some insight into this too.  It is hard to tell what is going on since she had a virus, she does have reflux, maybe just be as simple as increasing her dose or something...  Her heart looked fantastic again, so at least it is a non serious issue. 

Cecilia's one and only picture as Snow White (because she really hates her costume and was crying hardcore in the other ones I took!)

She is not going trick or treating obviously, anyways :)   We still have not got the other kids their costumes yet, but I am always last minute with everything. Gina wants to be something "spooky", Julia wants to be a Cat, I want Ana to be a Pirate, and I want Sophia to be the Queen of Hearts.  But, that may change if they see something they would rather be instead. 

I took a lot of pictures of Cecilia this week.   Her big sisters all have runny noses so we have had to be segregated from the rest of the family, and it was a little boring doing that. 

the last time wearing this dress most likely.  Grow Baby, Grow!!

She is going to have her pictures done by a very talented HLHS heart mama, Angela, in a few weeks.  I am so excited and can not wait to meet her little fighter, Lily (recently Post- Fontan). I have not met any other HLHSers in person that were older than Cecilia.  I think it will help me too, because it is so hard to envision Cecilia being past this time.  Send some positive thoughts to Lily, and her family for me ♥

Saturday, October 20, 2012

Home: Take 3

Home Again!!   Cecilia looks great, o2 saturation's are great.   She did vomit her continuous feeds twice overnight, but I was able to feed her by mouth early morning which she tolerated well.  I am in relief that technically she is a candidate for the next surgery anytime, but if she can remain healthy and grow this will be the late November.  Please pray that I can keep her healthy and out of the hospital until then :(   If she gets sick again, I am also relieved that she could get healthy there and instead of being discharged, just have her stage 2 open heart surgery at that time.... so we can just get past this!!! 

Our home care nurse, Cindy, is amazing.  She brings the kids presents and they adore her so much.  Sophia cries every time she leaves.   We weighed Cecilia together and she is an unusual dip from yesterdays weight at the hospital :(  YOU HAVE GOT TO BE KIDDING ME!!  Ugh, I can't keep being stressed out, if it is not one thing it is something else.  We agreed that Cecilia looks great, so hopefully it is just because the scale at the hospital is different than the one at home.  I am going to do my best not to worry about it today, and hope the number is up from 4.88 kg by tomorrow.  I am so desperate to keep her home and for things to go smooth. 

Our stay at the hospital was hard on me for the most part.  I always run into my social worker at perfect times since Cecilia's birth, so I am glad that I did again this stay, and had somebody I could talk to honestly and openly. Besides my ongoing intense fears and stress, there were things said to me by another that really hurt my feelings...It really helped me to be sympathized with on the matter, and hear from her that all of my feelings are valid.   She's been a great emotional support, even when I didn't need it, and I appreciate her so much for it. 

I love my Heart Mama's that I have connected with.  I wish that they did not live in different areas of the country.  One friend gave me a reminder that I needed so much ♥.   "It is so hard not to be negative when you know what can happen and how quickly things can go from good to bad. I just keep telling myself that I can't control what will happen to ****, but I have to enjoy every moment of being her mama, and she deserves a mom who isn't falling apart every time I look at her. Your negative feelings are justified, but just try to not let them take over your life...our lives are totally changed forever. "   Thank You so much.  There is things that I know I need to do to make it through.  And it is hard to get out of that way of thinking when you are sucked in.  I need to try to let go.  It is the only way I can enjoy the gift I have in my arms without falling apart.  That is so true.

sleeping through all the noise like a pro today ;)

Thursday, October 18, 2012


Lots of stuff going on since the last time Cecilia was in the hospital.  She has had diarrhea since her Cath that seemed to get better, then get worse.  I would say it is pretty severe now.  About a week ago Sophia had 2 days of diarrhea, so it seems to be a bug that just took a long time to reach her.  She seems like she is in a lot of pain randomly, and gets inconsolable.  She started vomiting and our home care nurse was concerned.  After she called Cecilia's Cardio NP, we were told that we had to bring her back to the hospital and get her on IV fluids to prevent dehydration.   Unfortunately there is nothing to cure a gastric virus, so she cant come home until she is ready and able to eat formula again.  I am bummed and frustrated, especially since I take so many precautions to keep her from getting sick.  For the most part she is content, but she gets herself so worked up sometimes it is hard to watch your baby go through it.  I'm sorry I can't fix you Cecilia.  I promise life is going to get day. 

I guess I hesitate to ask for help because I feel like I have so much to prove all the time.  There has been a few back to back deaths in the heart world recently, and I am certainly more depressed than I can handle.  Cecilia going back to the hospital again so soon (last admission, not current) brings a lot pain in my heart for frustrations and events I dont want to talk about publicly.  I asked my mom for help and she came and made my kids dinner, let me vent, and got me a relaxing drink.  I'm sad that my baby is never going to be fixed.  I'm sad that she has lived in a hospital more than at home.  I'm sad that I am so worried and so stressed that I am not the same mom to my other kids.  I'm sad that my husband and I argue so much about things relating to Cecilia's health care and can't compromise.  I'm sad that the ONLY thing I can do for her is make sure she has the best care I can get for her.  I'm sad that anytime you put a grip on her she panics in fear that someone is going to stab her for an IV or drain blood.   This list can just go on and on and mostly I feel too vulnerable and misunderstood and alone to even talk about these feelings.  There has been 3 times in her 3 months of life that it really felt like I was losing her... moments in the NICU, the event after her G-tube surgery, and just before her Cath.  Her heart looked the best it ever has a week ago, and I still can't relax.   I feel hopeless.  I feel like I need to do something more but there isn't much else I can do that I haven't already been doing to make her have the best chance.

With that said, even though it sounds our lives are very gloomy, it isn't.  Here is some pics of our recent Halloween crafting, and some pics of Cecilia in between the last and present hospitalization.  I know I am biased, but I think she is really pretty ♥

A broken, 1/2 heart


back to being mostly tube fed

feeling worse and worse... the day we had to go back to UMMC.  Hoping she can be better and come home tomorrow.  Karl has to go back to work!  But I need him to stay home while she is hospitalized.  I just get 100x worse stressed when I am away from her.  I need to be with her.  Karl is with Cecilia as I write this, because he needed a break from the kids and being stuck at home.