Wednesday, September 30, 2009

Chest tube troubles again......sigh

Mia still has her chest tube in that was placed on Saturday however it has twisted at the incision site several times causing irritation. Obviously when it becomes twisted the fluid is not draining properly. Yesterday it put out 20 ccs and today it put out 50 ccs so far. The nurses have been coming in frequently to check it and to redo the dressing. Her chest x-rays have really improved over the past couple of days but there is still come collapse in the left lung allowing the fluid to collect. The plan is to watch the output overnight and look at the chest x-ray in the morning. One of two things is going to happen. The best case scenario would be for the fluid drainage to be minimal and the chest x-ray to look good in the morning and then take out the chest tube and wait 24hrs to take another x-ray to see how the lungs look. The not so good scenario would be that there is still significant fluid and then the doctors would sedate Mia and inject a medicine into the chest tube, clamp it, and rotate her to make sure the medicine coats the lungs to stop the fluid collection. The downside besides another sedation is that it is painful but I am told Mia will not feel it. The nurse also said that it is very rare to have to have this procedure done in a child with TOF. I laughed when she said this because clearly Mia is not the normal straight forward case. I am really hoping for the best case scenario but of course preparing for the not so good scenario knowing that this will probably be the scenario that we will end up with. I know that sounds pessimistic but I am so tired of hoping for the best and ending up with the the "unlikely" scenario. I really want my little girl to "catch a break" in this recovery and for once not have to experience the more painful option. Just once.

Tuesday, September 29, 2009

Three weeks ago and a wagon ride

It has now been three weeks since Mia's first surgery. Three weeks. It isn't long given all that she has been through but I swear I have emotionally and physically felt every minute of these past three weeks. It has been a long journey but I know we will look back 6 months from now and it will just be a "blip on the radar screen."

We moved to our own room yesterday which has been a blessing. The parent accomodations still aren't great but I think it is the first night in three weeks that I have slept through the night not counting being at home. I am still very sleep deprived and my back is really starting to bother me from not sleeping in a bed. Mia is over being at the hospital. She is pulling out every tube and wire she can get her hands on. As I type she has pulled out her cannula for the millionth time today and I am just watching her stats and letting her be. It will be odd to hold her again without having to worry about disrupting a tube or wire.

Today we did manage to get out of the room for a little bit and take a wagon ride. She really enjoyed going to the big fish tank and to the playroom to pick out some new toys. Right now I am trying to get her to nap but she only wants to nap if I am rocking her in the rocking chair. I keep telling her we are starting a bad habit but right now I am in survival mode and will do whatever works and fix it once we are home.

I know everyone wants to know when we think we will be home. I am not even going to try to answer that question for obvious reasons. The doctors say we are in the homestretch. I am just not sure how long the homestretch will last.

Sunday, September 27, 2009

Goodbye to the PICU

Mia was moved today to the step down unit which is a great milestone but it has caused some anxiety in her. We do not have our own room and are currently sharing the pod with two other families. The only "privacy" we have are the curtains that divide the patients. I notice a look of fear and uncertainty on her face as she listens to other children cry and I wonder if it brings back memories of the orphanage. I am sure it does and it breaks my heart. It certainly is less than ideal for a child that has lived most of her life in and orphanage. She looks at me with an emotionless look on her face and has cried off and on. I can only imagine the confusion she is feeling. She also needed to have the chest tube placed yesterday and it has drained quite a bit of fluid. Hopefully that will subside within the next few days. At this point I am not even going to guess when we might be going home. I am grateful that we are in step down unit in spite of it being "less than ideal" for Mia. It does mean we are closer to being home.

Mia enjoyed her short visit with the boys today. They were here for about a 1/2 hr and then had to get home to get ready for Ethan's soccer game. *Good news*.... the nurse just walked in and asked us if we would like to share a room with a family and their daughter that we have become friends with throughout our stay! Of course I graciously took them up on their offer so we will be moving yet again and having a slumber party tonight! Praise God that He cares about even the smallest details! This will make our extended stay a bit easier.

Friday, September 25, 2009

Goodbye to another tube

The chest tube is not going to be replaced for now. She does still have a small amount of fluid in her lungs but the doctors are hoping it will absorb on its own. We are leaving the PICU tommrow and moving to the step down unit! Yahooo! I am still a little apprehensive about this next step given the challenges of the past couple of weeks but it is certainly a milestone to celebrate! Mia is full of smiles and laughter and the nurses and staff are constantly coming to her room to try and get a smile out of her which she freely gives unless they are touching her. We are constantly getting compliments on how adorable she is! Of course we already knew this!

I left the hospital for home until Sunday. It was hard to leave and I know I will struggle with wanting to be at the hospital this weekend but my parents and Dan are taking turns staying with her. She is in very capable hands even though the mom in me longs to be the one to meet her every need. I am really begining to feel the effects of spending 2 1/2 weeks at the hospital. I was exhausted after a few days but now I am almost delirious at times from sleep deprivation and the rollercoaster ride of emotions. Tonight Christian had a soccer game and he was suppose to be at the field at 5:30pm. I feel asleep for a little bit and woke up at 5:26pm. I asked him why he didn't wake me up and he told me he said "I tried to wake you by calling your name and shaking you but you wouldn't wake up." That is how exhausted I am and if there is any chance that Mia will be coming home in the next week I need to recover.

I am praying for a weekend of continued healing for Mia and continued strength and recovery for myself and my family. Maybe just maybe rumors will begin to swirl about us coming home!

Thursday, September 24, 2009

Chest tube troubles

The results of the chest x-ray are in.....and the chest tube has almost completely fallen out thus causing the the left lung to look diminished. We are still not sure if it is all fluid or a combination of collapse and fluid. Tonight the chest tube was removed and will be placed again tommorow morning. Sigh. The good news is Mia isn't showing any signs of being affected by this latest turn of events. We shall see what tommorow brings and hopefully it is all good.

Bumbo baby

New challenges

Miss Mia had her chest tube placed last night and the result was bloody fluid. Gross, huh? It isn't fresh and is not related to her eating. That I am told is good news. The best "guess" as to why it developed is that it could be due to irritation from respiratory therapy working to get secretions out of her lungs. She had a full blood work up and everything looked good so we may not get a solid answer for why it is there. It is starting to run clear so that is also good news.

I love that she is finally returning to her "old self" don't get me wrong but it has brought its own set of "challenges." Her sleep schedule is a wreck! She barely sleeps here in the PICU and if she does it is in 10-20 min increments. She is so tired but the constant activity is keeping her wide awake. She is also managing to wiggle around just enough to end up at the end of the bed. She is crabby and who wouldn't be with all that she has been through? She is obsessed with trying to get all of her wires out and has succeeded more than once. Today I actually had the nurse restrain her left hand after she pulled the cannula out of her nose numerous times.

I am trying so hard to be patient with all that is happening. I am desperately searching for any amount of light at the end of this very dark tunnel. As I type this post the respiratory therapist just listened to her and said she hears more diminishment in her left lung and the doctor has ordered another chest x-ray. I am teary eyed and bracing myself once again for what this could possibly be and ultimately mean to her recovery process.

Wednesday, September 23, 2009

Looking for the end in sight

Mia's little personality is coming back more and more with each new day! Today she will need to have a chest tube put back in. She started eating yesterday and the fat from the food is causing some fluid to collect in her chest. We are told it is not uncommon for this to happen. Another small setback for an already slow and difficult recovery. I was really looking forward to hearing that we were being moved to the step down unit today and we would be one step closer to home. I am trying to focus on the positives and I know that we are moving in the right direction but I am tired of all of the setbacks. I try to look at the "grand scheme" of things and know that the memory of these past 2 1/2+ weeks will eventually fade. Ultimately Mia's life was saved with this surgery and while the journey has been unimaginable at times I would do it all again in a second. I am hoping by the weekend there will be an end in sight or at least talk of us moving closer towards home.

Monday, September 21, 2009

Making progress slowly......

Mia had a great night Saturday night and there was even talk about moving to the step down unit on Monday. On Sunday afternoon she began to breathe harder and had a fever. Her white blood cell count was a little high so she was started on an broad spectrum antibiotic while we are awaiting results of her blood and urine cultures. In Mia's case I am glad that they are being cautious and proactive with her care. She was on a higher amount of oxygen yesterday but it was lowered today and she seems to be tolerating it. She also started eating yesterday but began to vomit. She hasn't had a bowel movement in about a week so they gave her a suppository and dulcolax and let's just say it worked like a charm. Today they pulled her last chest tube and her central line. Her central line may be the source of the fever since it has been in for two weeks though the line was changed last week in surgery. They did put an IV in her hand just as a precaution.

So we are making progress slowly but surely. Of course it is not as quickly as we would have hoped but we rejoice in any amount of progress at this point big or small. I apologize that this post is all over the place. I feel like my thoughts and mind are a bit foggy. Two weeks in the hospital will do that to you! I am so looking forward to getting home and back to our routine~maybe we will be homeward bound this week.

Saturday, September 19, 2009


Presurgery jitters for mom and Mia

Cautiously optimistic

Mia is now off the ventilator! They removed her breathing tube around 11:30pm last night. In previous attempts to extubate she was reintubated at the 12 hour mark so we have now gone past that and she is doing great! They also removed her catheter so that is two tubes gone in one day! The nurse did agree to take her arm retraints off as long as I am in the room with her so she is loving that she has use of her hands again. She is clapping her hands despite having an IV in one hand. My eyes are constantly fixed on her because she is quite busy trying to pull at her tubes. Just now she has managed to remove the tape from the IV in her foot all in about 5 seconds! She is so quick! I am cautiously optimistic that we have finally reached a turning point and we are on the road to recovery!

I have been taking alot of pictures to document her surgery. I do have few that I will share soon now that she has her breathing tube out. Unfortunately my SD card is not working so as soon as Dan visits today I will see if he can figure it out. Obviously I will not post pictures right after surgery but if anyone is having a child about to experience OHS and would like to prepare themselves for what they might see after surgery I am happy to share.

Friday, September 18, 2009


Mia is still on the ventilator but they are begining to wean it down again today. Yesterday they were able to wean her down to a low setting but then she wasn't tolerating it very well. It seemed to me to be a little premature for all that she has been through. The plan is to very slowly wean her off it so it may be tommorow before they are able to extubate. One of her chest tubes is out. She looks really good and is sleeping peacefully. One of the nurses put a small yellow bow in her hair. She looks adorable!

Thursday, September 17, 2009

Second surgery update

The second surgery went well and the surgeon was very pleased with the result. The pressure is much lower and he doesn't expect that she will need any additional surgery until she is in her teens or early adulthood. He did say they noticed what might be a very small VSD between the two chambers of the heart but he expected that it would close on its own and they would continue to watch it closely. As they rolled Mia back to her room in the PICU she was already starting to wake up from the surgery.

I did decide to come home last night because the days events and the past week have really taken its toll. I have a room at the Ronald McDonald house but knew that if I stayed there I would be back up at the hospital early and I knew I needed to take a much needed break. I woke up with the boys this morning and got them off to school and went back to bed myself. I did a few things around the house and still need to shower for the day as it is now 12:30pm. I really felt like I needed to experience some of my "normal routine" in order to prepare myself for the recovery ahead. I talked to the cardiologist today and she said Mia is doing wonderful! They are starting to lower the vent and are considering removing her from the vent sometime today. I am not sure how I feel about this. Of course I want her off of the vent but I also want to make sure she is strong enough to tolerate it and given the events of the past week I am more apprehensive this time.

Once again thank you so much for all of the prayers and comments. It means so much to know that there are so many people praying for our little girl!

Wednesday, September 16, 2009

Second open heart surgery....

Mia is currently undergoing her second open heart surgery in a week. The plan was to have a pacemaker placed and to repair her diaphragm. When the surgeon checked the pressure around her heart it was too high so she needed a second operation. What was suppose to be a fairly minor procedure has turned major. The good news is that she shouldn't need another surgery until she is in her teens or early adulthood. Still I am baffled by how many mountains my poor daughter is having to climb. Tonight I am thankful that she is alive but I am beside myself. Please please pray extra hard for her tonight.

Tuesday, September 15, 2009

Some answers....

Mia had another repeat ultrasound of her diaphragm this afternoon and it has indeed been injured during the surgery. Not the best of news but I did breathe a sigh of relief knowing that this is the reason her left lung continues to collapse after being extubated. Tommorow while placing the pacemaker they will also repair the diaphragm with is a "fairly minor procedure". No procedure feels "minor" at this point with all that she has been through. The surgeon also said he does not think that she will need a pacemaker long term and that he really feels that her heart will eventually find its rhythm. The surgeon will also check the pressure in her heart due to the pulmonary stenosis. If there is a high pressure he will need to do another open heart procedure to reduce the pressure. He does not expect to have to do this but it is a possibility.

Once again please continue to keep praying for Mia. Please pray for a miraculous recovery for our little girl so she can go home and start her "new" life!

Heartfelt thanks

In the midst of all that is going on we need to thank each and every person that has visited our blog and left a comment, prayed for sweet Mia, or posted to their blog asking for prayers for Mia. We are humbled and overwhelmed by the support and prayers that are being offered by total strangers, friends, and family. I have tears in my eyes as I read each and every comment and feel the prayers being said for us and Mia. You never truly know until you are in a difficult situation especially with one of your children how much this means. The few moments it has takes to post a comment have meant the world to us and at times come at the exact moment that we needed encouragement. What a gift it will be to share with Mia one day about the love, concern, and support of family, friends, and strangers who held her up in prayer during such a tremedous trial in her life.

Giving it to God

I am still waiting to meet with the surgeon but I have talked to the cardiologist and nurses and the plan is for a pacemaker to be placed tommorow. Again, this is not exactly what I want to hear and I am still believing that some miraculous healing will happen and it won't be necessary. I have decided today to stand firm on my faith that God will heal Mia and will give us the strength to face these challenges. Instead of letting the reports of today cause an emotional drain on me I am going to continue to confess what God says. He will give us strength, He is our healer, He is able to meet all our needs, He never leaves us or forsakes us. I have quit trying to determine in my head why all of this is happening and have chosen this moment to draw closer to God and to rely on Him when my own understanding fails. I know He does not want us to be in a state of confusion but of peace. I know He has a plan for Mia and though I do not know that plan I have to trust it.

Monday, September 14, 2009

Yet another setback......

I am keeping this short because it is getting too difficult to keep rehashing "the latest" to family and friends especially when the latest is another setback. Mia was put back on the ventilator this morning. Once again I kissed my little girl with tears streaming down my face as I left her room for her to go through intubation once again. She had an ultrasound of her diaphragm(sp? too exhausted to look it up) to see if the nerve was injured during surgery. If this is the case they may need to go in and repair it and are also considering placing the pacemaker at the same time. Another possible scenario it that since her body was so malnourished that she is having a difficult time recovering. For now the plan is to keep her on the ventilator for the next couple of days to allow her body to recover.

Please continue to lift us up in prayer. I am so physically and emotionally exhausted. I desperately want some good news and I am struggling why my daughter has had to endure so much in her short life. I am trying to trust in God's plan but right now it is difficult. I am not going to lie, as my daughter has struggled my faith has also. I know I cannot lean on my own understanding but I have to trust in Him.

Sunday, September 13, 2009

Off the vent....again

Mia is now off the vent again. She is doing really well and the respiratory team said her lungs sound great. Now we just need to get her coughing to move all the secretions in her chest! When they removed the tube I left to get ready for bedtime and they said she was saying "mama." I felt horrible that I wasn't there. Now she is sleeping comfortable but I am happily looking forward to a long night now that she can cry and call for me. It will be sweet music to my ears!

Wake up sleeping beauty

It is 7:00pm and we are still waiting for Mia to wake up so they can take her off of the vent. She is breathing on her own but they haven't been able to remove the vent because they want her to be very awake. So I sit and wait. The boys were up visiting her tonight because due to school and sports activities I don't know when they will be able up to see her again. They did really well seeing her despite the breathing tube and numerous wires.

As I listen to her day nurse brief the night shift nurse she mentioned that Mia is 19 months old today. She has also been with us two months today! With everything going on I completely forgot. Please keep the prayers coming!

Making progress

I talked to Dan earlier this morning and he said Mia's left lung is looking great! In fact there is talk about removing the ventilator this afternoon. At this point they are begining to ween her from the vent to see how she tolerates it. Her heart is also continuing to regain its rhythm so we are hopeful that it will fully continue to heal and a pacemaker will not be needed.

Today the plan is to go to Ethan's soccer game this afternoon and then head up to the hospital. Part of me wants to be there "if" they remove the vent but the other part thinks it will do me some good so be out of the hospital and with the boys. I really feel like I need to experience some of our "normal" life. I feel so much better after a good night's sleep and being at home. I really needed this.

Saturday, September 12, 2009

Quick update

Dan is at the hospital tonight with Mia. I came home to spend some time with the boys and get out of the hospital for a night. Before I left she had a chest x-ray and her left lung seems to be clearing which is great news! There isn't any fluid around the lung which is good because she would have needed a chest tube to drain it. They will continue the treatments throughout the night and repeat another x-ray tommorow morning. The doctor actually said it looked better than expected! Praise God!

Off to spend time with the boys and hopefully get a good night's sleep!

Not much to report

Mia is still on the ventilator and still receiving treatments from the respiratory team which involves taking a vibrating disc like machine to the back of her left side to loosen whatever may be in the lung. After the treatment they suction her out through her nose and mouth. This morning they loosened through suction some "fresh blood" and the doctors are thinking it could be a clot that might be responsible for the collapse. Obviously it is a wait and see approach. The good news is that it is a matter of "when" will the lung regain its full function not "if". Tonight they will do another chest x-ray to check her progress. Everything else looks good and I just continue to pray that we overcome this setback soon.

A few people have e-mailed me and asked me if it would be okay to link our blog to theirs so others can pray. We absolutely believe in the power of prayer and would appreciate the prayers so feel free to add our link to your blog if you would like.

A Big step backwards

Mia started to have trouble breathing last night so she is back on the ventilator. The left lung has some collapse in it and there might also be some fluid. It came as quite a shock this morning as we went to bed being told that her lungs sounded great. After a night of her babbling and calling "mama" I sobbed the hardest I have since being here at this news. Before they reintubated her she was holding her blanket and the doctors took it from her and gave it to me. She reached out her little hand for it and I had to leave the room, blanket in hand. We are still waiting on the results of the chest x-ray to see what the plan of action is. I will keep everyone posted but in the meantime, pray hard that she is able to quickly overcome this setback.

Friday, September 11, 2009

Turning the corner

Praise God we have finally turned the corner today! Not only are the chest tubes out but Mia is now off the ventilator and doing great! Her little personality is slowly coming back! I was able to lay in bed beside her for awhile tonight and I found myself just staring at her with tears in my eyes. She started to call "mama" and my heart melted. I needed to hear her little voice! This is a quick post because I need to go tend to my girl who is very awake this evening! Thank you so much for all of the prayers! Keep them coming!

Small steps forward

Mia had her chest tubes removed this morning! Another small step forward. As I sit by her bedside, they are working on lowering the ventilator and "hope" to have her off of it later today. The doctor said that she feels confident that it will be gone by tommorow. I think the fever that lingered held us back as far as progress goes. You quickly learn in this process that it is one step forward and two steps back. It has been an emotional rollercoaster for sure. But I will take any amount of progress however small it may.

The doctors and nurses are great here which definitely makes things easier when you are going through this. It is difficult to get use to all of the activity and it makes resting hard. I do leave the room from time to time just for a change of pace or to clear my head. I have met a couple other families here whose children have also gone through open heart surgery though mulitiple times. The family whose daughter had the procedure that the surgeon mistakenly explained to us is in the room next to Mia. I talked to her mom this morning and her daughter was adopted too!

I pray that this is the day that Mia begins to "round the corner." I am amazed at all this little girl has been through and long to hold her and see a bit of her personality.

Thursday, September 10, 2009

Still fighting

The plan was to try and take Mia off of the ventilator this morning. Unfortunately when they checked her "gases" today which consists of a blood draw her O2 level was not where it needed to be. I think the plan is to try later today. She has also been running a fever since surgery and they are now treating that with a antibiotic. All of her blood draws look good though they did draw blood again to continue to check. To help bring her fever down they gave her a medicine that basically paralyzes all of her skeletal muscles so that they can pack ice bags around her. The ice bags along with the tylenol seem to work but as soon as it wears off her fever spikes again. She still remains agitated. It is heartbreaking for her to look at me in distress and for me to be powerless. What I wouldn't give to walk this walk for her.

Please be in prayer that she is off to come off the ventilator soon. There is also some talk about taking the chest tubes out today too. The pacemaker was turned down a little today to see how her heart reacts. Please pray that her heart continues to heal and works as it should.

Wednesday, September 09, 2009

PICU and pink fingers and toes!

Sorry for the delay in posting. Dan brought the laptop up to the hospital today as I did not want to be lugging it around yesterday with nowhere to go since we did not have a room. Mia is doing well for just having major surgery less than 24 hours ago. The nurses and doctors feel that she is a pretty "typical" case as far as recovery goes. One issue we are having is that she is still experiencing heart arrithymias. This means that her heart is beating irregularly and if it continues she is going to need a pacemaker. I have been in prayer and just believing that her heart will work as it should. Still there is a fear in me as this would mean another surgery and additional surgeries down the road to adjust the pacemaker. I was thrilled to see her pink fingers and toes after surgery! I never noticed just how blue she was until I saw her pink!

They tried to remove the breathing tube this morning but couldn't quite yet. Her O2 levels aren't quite what they should be so I think the plan is to try again later tonight or tommorow. She is also on difficult little girl to sedate! The nurses said a typical child is given pain meds or sedated every 2-3 hours but they are sedating Mia every 45mins. They want her body to rest as much as possible but she is fighting to wake up. What a strong little girl!

Please continue to pray for little Mia! We still have some many obstacles to overcome but I know God's hand is upon her recovery and He will see her through it!

Tuesday, September 08, 2009

Surgery is complete

We just talked to the surgeon and he said Mia's surgery went pretty much as expected. He said her pulmonary valve was very narrow. He was able to save her pulmonary valve but in doing so the pressure around her heart is at 70% but he expects it to drop in the next few days. He said a good pressure would be around 40%. If the pressure does not drop he said she would need a pacemaker. My mind will not even go there yet because I am believing that her healing starts NOW! We should be able to see her in the next 20 minutes or so. I am mentally preparing myself for how I will see my little girl. Please continue to keep Mia in your prayers! I am believing for a miraculous recovery for Miss Mia!

Off bypass and closing

Mia is off bypass and the surgeon is now closing. Blood pressure is good, no irregular heartbeat, and stats look good! Praise God! I am looking forward to talking to the surgeon in a couple hours to get more details of how the surgery went and what we can expect from this point on. Thank you so much for all of your prayers! They are working! God is good!

On bypass

I just talked to the nurse and she said Mia is doing great and was intubated without any problem. She is now on bypass. The surgeon is now starting the correction process of the surgery. Please continue to keep our sweet girl in your prayers.

In surgery

We arrived at the hospital at 5:45am and as soon as we went back into the preop room Mia started to cry immediately. After about a half hour she feel asleep in my arms. The surgeon came in and started explaining the surgery procedure to us and started talking about strokes, catheters, and death rates. He also said this is a high risk surgery. It was strange because part of what he was saying seemed to be somewhat related to Mia and I just thought he was talking in medical terms. I thought I am going to let him talk and then ask my questions. Finally Dan said something(I don't even remember) and the surgeon said "Oh I am thinking of tommorow's case which is a Fontan surgery." I was so upset at this point and breathed a sigh of relief as he started to explain Mia's surgery.

Then I was told I would not be able to go back into the operating room as originally planned. With this news I broke down in tears. The child life specialist tried to talk to the doctor but he was adament that I could not be there in case of an emergency. They wheeled Mia and I back to the doors of the operating room. I walked away from the doors with her and whispered in her ear that God loved her and that I was praying His protection over her. I kissed her and told her I loved her and handed her off. It was one of the most difficult things I have ever done.

Monday, September 07, 2009

Thoughts the day before surgery.....

Tommorow is Mia's surgery day. I don't think you are ever fully prepared for your child to have surgery. Obviously Mia is completely unaware of the mountain she is about to climb tommorow. We, of course, are very aware for the most part of what we are about to face. Even though I know she needs this surgery and her life will tremendously improve, it is getting on the "other side" of the mountain that is hard. I try to focus on the "other side" and look forward to her pink fingers and toes, gaining weight, and Mia having the strength to catch up developmentally. I know she will be a different child a couple months from now and I am so excited to experience all that she will be able to do but "the climb" is difficult. The anticipation of it all is overwhelming.

The day will begin very early tommorow as we have to be at the hospital at 6:15am with surgery scheduled at 7:30am. I have asked the surgery team to allow me to hold Mia as much as possible while they are doing whatever they need to do prior to surgery. I do not want her to be upset before surgery and Mia is wildly upset with medical personnel approaching and touching her. Even holding her in my arms it is quite a battle. I will also be going back into the operating room with her until she falls asleep. I am hoping with these measures in place it will lessen some of her anxiety.

I will be updating our blog throughout the day with her progress. Please keep Mia in your prayers.

Friday, September 04, 2009

Hairbow fun!

Mia has quite a few headband bows though she rarely ever wears them. I can't even keep shoes and socks on her feet so the idea of a bow on her head seldom crosses my mind. Today as I was pulling out one of her dresses I happened to find a matching bow. I know the bow is almost as big as her head but it is so cute! For fun I decided I would try to put it on Mia fully expecting that she would pull it right off. As soon as I put it on her head I took her over to the mirror to look at herself and she started laughing but she left it alone. I took her downstairs and decided I needed to seize the opportunity that may only come once and take some pictures. She pulled it off but handed it to me wanting it back on.

We went to Target and again she would see her reflection in a window and laugh. As we walked around the store she almost forgot it was there. As we continued to shop she finally yanked it off so I put it beside her in the cart. As we were going to checkout I noticed that the bow was nowhere to be found. I quickly scanned the aisles and went to guest services but no bow. So her beautiful new bow is lost somewhere in Target. Maybe just maybe I will have better luck with barrettes.