weird breathing pattern

Recently eliana started breathing funny.  She would have bouts of fast panting followed by short apnea.  This pattern would continue throughout the day while she is awake.  When she is sleeping, she seems fine but it’s weird that she breathes like that when she is awake.  I have been watching her anxiously and tapping her face or shoulder reminding her to breathe whenever she forgets to do so.

She also has been retching quite frequently, and although she has the fundoplication done to prevent her from vomiting and burping, she seems to be aspirating.  Her face turns dark red as she tries to gasp for air after she retches.  Again, I watch her anxiously as I tap her to breathe.

To say the least, we are kind of concerned for her.  I was close to taking her to the ER but decided to watch her a little longer.  She’s been doing it since her last appointment with her pediatrician where she received a bunch of vaccines.  I’m hoping these are just bad side affects from her vaccines.  Please pray for these symptoms to go away.  It’s scary to watch her turn red and purple and then pale white..  😦

Other than that, we have been doing very well.  Eliana having health issues have not deterred us at all from going to places and enjoying our family time together.  I must say though, that her cleft lip and the G-tube sticking out make me shy away from big crowd of people.  One time, I noticed a stranger staring at eliana’s face at a wedding as I was strolling her.  She stared at her so intently and with such a shocked expression on her face that I couldn’t keep my eyes off of her and eventually wanted to say unkind things to her.  ‘What, lady, you’ve never seen a cute baby before?’  Sigh…  It’s a good thing that I have been saved by grace to not act out my thoughts and emotions.  I’m also thankful that I have a husband and other ladies to hold me accountable to my actions.  Thankfully though, over these past months, even the self conscious feeling of having a cleft lip baby girl is slowly fading away.  We are getting very used to her cute little face and smile and the G-tube.  Let other people just learn to deal with it.  Quite contrastingly, I am so thankful that we find a good harbor at our church.  Our church body is so receptive and loving that I don’t feel embarrassed or self-conscious to show off my blobby girl.  We are so blessed to have our church family.  🙂  Thank you, for loving our little girl, lighthouse!  🙂

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quick update :)

Hello all! 🙂
Eliana was discharged last last sunday after three days of hospital stay. The procedure went well, but it confirmed that she will need a big heart surgery in the future to solve the main problem (this procedure was a temporary fix for the big problem (coarctation of aorta)). Also, the lip surgery has been postponed to some time in December or even in January. We are just waiting for the hospital to call and finalize the date for us. 🙂 Eliana seems to be doing okay.  She doesn’t seem to be visibly better after the surgery, but the cardiologist said her pictures and numbers look better so we are thankful.
This past week has been a crazy week with Eliana going in and out of the hospital and our family moving to a different place. But somehow God worked all things together for good — even eliana not being at home while we were moving was a blessing in disguise! God really knows what He is doing. 🙂
Leaving eliana for the second time in the hospital was more difficult than I thought.  It finally hit me that eliana was getting admitted when a nurse put a green ID band around my wrist to identify me as her parent.  I felt like a criminal getting arrested with a police putting handcuff around her wrists.  I sighed to myself and thought, “Oh, Lord, not again…”  Bad memories of staying numerous hours at the hospital came back. Everything in the hospital was so familiar– the beeping sound, nurses walking back and forth in the hallway, the monitors with moving numbers and lines– except my eliana has grown so big and so much dearer to my heart.  The thought of leaving her again in the hospital drove me nuts.  😦  😦  Please pray for me as eliana will undergo many more surgeries in the future for her heart and cleft lip/palate. It is getting more difficult to leave her as I get attached to her more and more. She is my little blob I have gotten quite attached to over these past few months. May God have mercy on her and our family and ease the pain of future hospitalizations…

love,
maria

Today

The cardiologists decided to use balloon to stretch eliana’s coarctation and the procedure went well as planned.  She was supposed to be discharged by tomorrow but it seems like she’ll stay at the hospital a bit longer.  We have been so busy packing since we are scheduled to move tomorrow.  It seems like a blessing in disguise that eliana isn’t here in the midst of chaos of packing up.  So many things changed in the past few days and my mind is still rushing to catch up to everything that happened.  Obviously I don’t have anything under control, but it’s great to know that God who is good is in control over all things.  🙂

update:

-the KOs will be moving tomorrow to another unit in the same apartment complex.

-eliana will hopefully be discharged by Sunday.  🙂

-eliana’s cleft lip surgery will most likely be postponed for now due to the new findings of her heart condition (please pray that her aorta will grow normally and not shrink again 😦  she may need another surgery in the future to permanently fix it.).

we will update you more as we find out more about her condition!  🙂

thank you!

in Christ,

maria

Tomorrow

I wanted to leave a short update before tomorrow.  We found out yesterday through echocardiogram that eliana’s coarctation of aorta has not been completely fixed with the first heart surgery.  They wanted to actually admit her yesterday but we weaseled our way out of it.  haha.  Anyway– the condition came back and it seems like she will be needing some kind of surgery soon (within one or two weeks).  We will find out the exact plan tomorrow morning.  She will either have a major surgery to fix everything or have a minor procedure plus a major surgery later on.

Please pray that we will trust in God’s plan for eliana!  I (maria) was hoping that her holes (vsd’s) would be fixed and may not need any surgeries, but God seems to have a different plan for her.  A big surgery means a big scar down the middle of her chest–  but I’m trying to think of all her scars as a unique story that tells of God’s grace in our lives.  🙂  Thank you for praying for us!  🙂