Tuesday, October 28, 2008

Precious Mia

Here are some updated pictures of Mia. You can see she is nasally intubated which allows her to suck on her binkie which she enjoys. In a nutshell, Mia is doing alright. She has been spiking fevers again and her cultures continue to come back negative. They will continue to culture her to make sure they are not missing anything and/or that she doesn't have a line infection. She was very agitated this morning and was inconsolable. It's so sad to see that she is crying and upset but not be able to hear it due to the intubation tube. Mimi was thinking she had a tummy ache and sure enough as soon as she "passed some gas" she was much better. Her heart rate slowed again and she was able to rest. Mia is lucky to have a mommy who is so in tune with her and her needs. Mia is still not able to be held much if at all right now (due to the intubation) but she gets lots of love from looks and pats. Mia continues to receive morphine and ativan to help keep her comfortable. How nice it will be when just having her mommy's arms around her will be all the comfort she needs.

Mia has been waiting for over 90 days for a heart. It's so hard to watch her pain and suffering. We hope with all our hoping power her wait will not continue for another 90 days. Her parents have talked about listing her on the donor list in other states/regions but unfortunately they would have to have $450,000 upfront to cover the cost of the surgery, which they obviously don't have just laying around. Who does right?!
Mia is fighting to survive with all she has and I know we all sincerely hope and pray that one day very soon she will begin fighting to heal instead of just survive!
We love you Mia!

Tuesday, October 21, 2008

Update on Miss Mia

I apologize for not posting an update last week after I visited Mia, but here is one after my visit today! Mia had a pretty good day today, altough she did have to go back into surgery a little while ago to get a new central line. Mia was intubated last week to help give her body a rest. Her little body has to work so hard just to sustain itself and she had been suffering from fevers so the doctors decided to give intubation a try and see if that helps make her more comfortable. She seems to have gotten some rest since being intubated and I'm sure it helps that she is receiving pain meds too. Her fevers have gone away and her heart rate has been low so that is a bonus. She is also gaining weight. She is up to almost 10 pounds. Go Mia! When her body doesn't have to work quite so hard it makes it easier for her to put on the pounds instead of burning the all the calories she receives. They were going to be removing Mia's intubation tube today and trying a nasal intubation to see how she does on that. Maybe then she'll be able to enjoy her binkie again. Mia is of course still such a sweet baby who has had to endure so much. It breaks your heart to see her with all her tubes and know that you cannot just instantly make it better for her. She is definitely one tough cookie, just like her mama. The McDonald's have all been so strong through all of this and I cannot wait for the day when Mia gets to be with them at home!

Thanks for everyone's continued support and prayers for their family!

Saturday, October 11, 2008

3 Months Old

Mia turned 3 months old. Sadly she is still in ICU waiting, waiting waiting. Not too much has changed, still good days and bad days, but here are some excerpts from her family's blog...... Well the strongest little baby on the planet turned 3 months old. She has been such a trooper the last couple weeks. This last week has been kind of a roller coaster. Mia continues to spike a fever twice every day. The nurses culture her over and over, but nothing ever turns up positive. The last couple days ID (infections disease) has been running all sorts of labs. Mia had her first CT scan, which came back clean. They did discover however that she has blood clots in her right leg. This was caused by the two different caths she had the first weeks of life.
Three days ago they did an ulrasound on her head to determine if she had a stroke. What??? yes, I know! I pretty much felt the tissue in my own heart ripping when they mentioned it. Mia had been so lifeless the two days prior, and she usually has so much fight in her. I was really concerned because her spunk was gone. They gave her some narcan, and she woke up more after that. Apparently her kidneys are having a difficult time with all of the medications that help sedate her. All of her tests for viruses and infections came back negative. They have no idea why she has this continual fever. I guess sometimes babies with severe heart failure just have fevers. So for now, they are just blaming the failing heart. One of the transplant cardiologists is concerned because if they are missing something and they transplant her, it would be very detrimental due to the overloading of immuno-suppressants given post transplant On a lighter note- she now has a cute little squeal she does instead of cry. Because she never feels good (high fevers) she gives us little shout outs to let us know. Before she would strait up scream, now she just has a girly squeal.I have been trying to get her to smile at me. Developmentally she will be behind, but I can't wait for her to look up at me and smile. She will open her mouth up really wide when I play with her, but I don't consider it a smile. She smiles a lot in her sleep (air in the tummy) but nothing due to all of my antics. A big smile is coming soon I can feel it... just like her heart!!I have a renewed hope and faith for my little one.

Mia continues to fight and I know everyone's thoughts and prayers are helping her and her family! Thanks for all everyone has done and continues to do for the McDonald Family.

Thursday, October 2, 2008

A Broken Heart

Without the scars and various tubes and wires Mia is attached to she looks like any newborn baby....perfect, sweet and completely kissable. Sadly, Mia is not a typical 3 month old. Her little body is fighting so hard just to sustain itself until she is given the wonderful gift of a new heart. As one holds and cuddles Mia you cannot help but have your own heart break for this sweet little baby who is trying so hard to survive! I look at Mia and her mommy and wish I could make all their troubles better but for whatever reason that is not Heavenly Father's plan right now. It has been evidenced time and again what a fighter Mia is and it is my prayer as well as many of yours that she will keep fighting and grow into a beautiful healthy little girl.
Mia has been spiking fevers off and on for a few days and seems to have tummy aches but is continuing to exhibit her will to live. We hope and pray that Mia's wait for a heart will end shortly and she can begin the path to healing. This little baby really would melt your heart if you could meet her. Please continue to keep Mia and her family in your prayers.
Little Baby Mia resting on her tummy!