Talking to Her Dad on the Computer

Mariska was awake thought we would share. We're talked to Sam together. Mariska is doing well. Some days I think she doesn't need her feeding tube anymore, but others I'm grateful we she has it still, like when shes too exhausted to eat but starving.
Her hair is long as ever in the back starting to grow more in the front, when it grows a little more we'll have to get her pictures taken. I wanted the tubes to be off of her face but that's just part of our little girl for now, we'll have to wait and see.
We have had bad moments and good ones. One hard time for me was when I didn't flush out her feeding tube which ended up clogging. I tried for almost 3hours trying to get it to clean out all while crying and thinking I broke her I broke her. I called my mom had her come over, I knew if I didn't get it unclogged I would have to pull it out and put a new one in. This is not something I was looking forward to. I called the home nurse she told me what I didn't want to hear if I couldn't get it cleaned out I would have to replace the tube. oh the joy. Sticking something down someones nose isn't fun. When my mom came over one of the ward members come bringing dinner, I was so nice not to have to find something to make. Thank you to all that brought dinner for us! Her husband is an RN, so she had him come over and help me with the tube. I Tired the first time but didn't get it in, I had him give it a shot success! we taped in place and I no longer broke her. :)
That night is when it truly hit me that she was home and mine. Our little miracle!
Thank you for all your thoughts, prayers and support.
Love Melynda and Sam

First Day Home

Her first time in her bouncy set. :)
updating soon!

The 9th

In order to take Misky home we had to do a 24 hours of just us taking care of her, so much for getting help. This was just to make sure we knew how to do all her meds and to make sure we could care for her. This way if we had any questions they could answer them when we had all the nurses. well we pasted :) I felt a lot more comfortable taking care of Mariska after we did this, I knew we would be ok at home.

Going Home?

The Cardiologists just same in for their morning rounds. We're changing her feeding's to every three hours instead of two. This should be nice, waking every 2 hours to help feed her and pumping every 3 has become a little bit to much for me. Now I just hope she can keep all that she eats in her belly. Her cardiologist said we're going to plan on discharging for Monday. Can it really be true? Is Misky going to finally get to come home and out of PCMC?? I have to tell the truth I'm a kind of scared about taking her home, what if something happens. I guess that's normal for a new parent to feel, its just very intense. I not for sure if we'll have to take oxygen home or not I think we might same for the feeding tube, ugh. We'll learn how to place and check for placement and then it will feel like second nature to us. Have to remind my self to take baby steps. Time to check on Misky, maybe I can get a nap or two today. Would be nice to get some christmas shopping done and pick up a tree and have it ready. hmm Chistmas, can wait to have Christmas with Misky. Thank you for all your prays it blows me away to see how much people care. :) until next time. Melynda

She Moved!

Mariska was finally moved to the third floor. Which means shes getting better and will be able to come home soon. :D Sam and I are so excited. I went to do my motherly duties, when I was done they had moved her out of the PICU to the CSU (Childrens Medical unit) I was waiting to see if they had a bed upstairs before I left and came back to she had been moved up. I happly tool all her Chirstmas things off the wall and set out to find where she had been moved to. Shes in the "O" sectoin. I am amazed at how much love everyone has shown us in the past few difficult weeks thank you for that and your support. Love Melynda and Sam

Just Air...

They took Misky off the high flow oxygen this morning. Just one step closer to having our sweet baby girl finally at home with us. Hard to believe that shes three weeks old today, time has gone by so slow but amazingly fast. Doctor Hawkins came by tonight told us they are going to do her swallow study tomorrow. They have her drink some dye then take x-rays to see if it goes to her lungs or if it goes to her stomach where it should go. If she passes then they can give her milk orally instead of having a feeding tube going to her small intestines. Dr. Hawkins asked if she's loud when she cries, we said yes and so did her nurse. Dr. Hawkins said that's a good sign, means she will probably pass her swallow test. Thanks for all the prayers and support, it has been a great help to us. :) Melynda and Sam

Suprise Suprise!

It has been about 2 weeks since mariskas surgery. Friday the 3oth they were talking about changing the size of her breathing tube that goes into her throat and they said they were going to take the tub completly out just to give her a try telling us that they dont expect her to do well at all without the breathing Tube and for us Not to Expect Much. The Reason why they were saying this was because that had ealier taken x-rays and found that her Right Diaphram is Paralized which dosent allow her right lung to expand fully. Even though this was the case We Really Didnt Want to listen to the doctors and we decided because she was having a difficult time we should give her a name and blessing which we did the saturday the 1st which just happened to be the night before they were going to change out the tube and test her. On sunday Morning they took the tube out to see how she would do and when we talked to the doctors they said she was doing Great! All the Doctors were suprised and didnt expect her to do as well as she was doing so they asked us to wait a day before we could hold her. It has been now Well passed a day since then and We have now held her many times. The Doctors say that she is doing Good. Although her Diaphram is still paralized she is doing good. They say she is breathing fast but this is normal because kids with this condition go home breathing fast anyways. They Said they dont know for sure how much her parlyized diaphram is contributing to the fast breathing and say we will just have to wait and see if it heals fast or slow. Her Nurse has explained that they expect to be taking the Oxeygon down and that she will go out of the PICU Tomorrow the 5th of Dec. Hopefully this is the case and mariska will Continue to improve, But the way she has progressed thus Far We expect her to continue and We Pray Come Home Soon. We Thank All of you for your Prayers and Support. Sam & Melynda