Day 14: Extubation Tomorrow!

They are planning to extubate Liviana tomorrow morning! This means she will be getting her breathing tube removed and be off the vent. I am a mix of excitement and anxiousness. I know she is going to be so much happier and more comfortable without that tube but I am anxious about loosing that nice safe vent air helping her breath. Please keep her in your thoughts and hope that she does well off the vent.

She will be completely weaned off of her morphine tonight and her feeds are up to 20cc's an hour. They are going to give her some reflux medication because she had a spit up/throw up incident last night. Reflux is very common in CDH babies so this is not unexpected.

Her echocardiogram this morning showed her pulmonary pressures are down to the 40's from the 70's two days ago. I was SO relieved to here that news. It was the one area she was still having difficulties. She is now down 5 more ounces to 8lbs. even which is likely helping with those pressures.

Liviana gets to move to a big girl crib today too. I am so excited to see her making progress. I will be heading out later to find her the perfect mobile now that she is going to be such a big girl!

There is always the real possibility that extubation could change and won't be tomorrow morning but right now, all is pointing in that direction. Please be thinking of Liviana tomorrow.

I would like to ask everyone to keep Jill and Billy in your thoughts and prayers. Their sweet little girl Maggie lost her battle with CDH after fighting hard for 8 months. My heart aches for their loss. You can find a link to their carepage by accessing Cadenne's blog at the right and finding the Maggie carepage link on the right.

Day 13: Words Cannot Describe

I had a hard time preparing this post because I really was at a loss of how to describe the joy of what I experienced. I feel as though yesterday my little girl was born, I feel as though yesterday my little girl came to really know me, and I know her. As she was handed to me for the first time to hold, smell, kiss and cuddle I had to wipe my tears from her little head. It was a moment I had waited so long for but had underestimated the power of.

When you carry a child for 9 months it is taken for granted that at the end of the pregnancy journey you will hold your little one and welcome them to the world. The loving bond that you experience as you hold and nurse your baby is awaited with eager anticipation. I knew when Liviana was born that I would not be able to hold, cuddle and nurse her. I never focused much on the loss of those moments since we were so concerned about her well-being and survival after birth. The next several days were filled with fear, anticipation, anxiousness and happiness at her resulting improvement. I stood by her everyday with her little hand wrapped around my finger talking to her about anything and everything. That was my way of connecting with her and it has been wonderful and special. Yesterday however, I felt all of those emotions normally felt as you hold your baby for the first time immediately after birth, except ten fold. Tears of pure, strong love came pouring out. Our skin to skin contact relaxed her into the calmest state she has ever been in and overwhelmed me with love and joy. They had to come in and turn her oxygen down to 25 because she was hitting 100 on her Sats. We were both immmensly happy.

I was able to hold her because she was switched to the conventional vent yesterday. The transition went well, no bumps. She has continued to wean down on everything. Her morphine is down to 10 and they want to have her weaned almost off of that when they extubate her (hopefully in a couple days). Her pulmonary pressures on her last echo were back up to the 70's. They are doing another echo tomorrow to see if that has improved any. Right now the pulmonary pressures is the only thing that is not looking good so hopefully that will improve as she loses more of the fluid she is retaining.

She was needing to lose weight, as she was up to 8lbs. 13oz. She is now back down to 8lbs. 5oz which is much better. It is odd to think of her needing to lose weight but the weight was from post-surgery and possibly hindering her pulmonary progress.

Her feeds are up to 10cc's an hour and they are moving to 15cc's an hour this evening. She so far is not having any stomach or bowel difficulties.

I am waiting right now to hold her again and I am so, so excited. I have included a picture to share my joy with everyone else.

Day 11: It Was a Special Day

Today Liviana started feeds. They start with the colostrum from the first day and go from there (they are numbered and dated). She started with 1cc an hour and and switched to 2cc's an hour later in the day. She is tolerating it just fine, no signs of stomach or bowel problems so far. While she was probably thrilled to have her stomach suction tube removed from her mouth, she gained the tube for feeding in her nose, which I was told made her quite angry this morning.

I got to give Liviana a sponge bath today also. It was so great. At first she was not very happy but when I got to the point of washing her head and using the little brush her eyes rolled back and she was in heaven. It was so cute to see her. I held her up while the nurse changed out her bedding and she very kindly pooped all over my hand and the nurses hand. It was so cute and I did not mind one bit. I was then very excited when the nurse asked me if I had an outfit for her. I did not think we would be able to dress her this soon. I picked out a nice little pink sleeper for her. She looked so cute. The nurses changed out her KU bow and added a little pink one to go with her outfit.

Following her bath I stood next to her holding her hand for about 10 minutes while she looked at me. It was a special time and it is so great to see her little eyes and know that she knows momma is there.

Dr. K. was keeping up with her during the day and awaited the results of her echocardiogram, x-ray and blood gases before deciding if she was ready for more weaning and a possible move back to her conventional vent. While her Sats stay great and her blood gases stay great her pulmonary pressures were back up again on her echo. He decided to hold her at the her current settings for the night and revisit the issue in the morning. He said he can deal with the high pulmonary pressures since everything else is so great but he does not want to push her too much. While we were excited to think of her moving off the high frequency vent we don't want her to be compromised in any way. I have been told I will likely be able to hold her when she does eventually make the switch which I am so, so excited for.

She is starting to be awake a lot more which is wonderful. Brad is staying the night again and will probably spend some time reading to her and holding her hand for more of their special bonding time.

That is all for now. I have to get home to get Aria settled into bed. Her and Dooda were watching Winnie the Pooh when I left to say goodnight to Liviana.

Thank you again for your continued support, caring and comments. They mean alot to us in this difficult time.

Day 10: We are so proud of our little girl!

As I think back to just a few days ago, in that 24-48 hours post surgery, I remember how scared I was that I was going to lose my little girl. I would sit in the chair gripping a pillow in my lap watching them make changes to her vent settings, bring in new equipment and watch the monitors. I knew they said that the first 2 days or so post surgery could be rough but I was really not as prepared as I thought I was.

Now, Liviana seems to be cruising along, just as she should. The last couple of days have been nothing but weaning. When I last spoke to Dr. M. on Friday he thought she could possibly be extubated in a week. I could not believe it. Since then, she has been weaned down on the nitric and it looks like it might be gone altogether by late today or tomorrow. During those weans they have not had to increase her oxygen, which is really great. They are also continuing to wean down her pressures and her oxygen little by little. She is completely off of her Dopamine, which was there to help regulate her blood pressure. She never really had any blood pressure issues so it was more of a precaution and is now totally gone. They started weaning on her Morphine a couple of days ago in little steps, which she seems to be tolerating so far. They were trying to keep her with her right side up alot to help with her little lung collapses. Her x-rays are starting to look a lot better so she now has more positions in her repetoire, which I'm sure she likes.

There are still the rough moments. Two nights ago she started de-sating and they suctioned her a few times and got a huge glob of mucus out. It happened a couple more times that evening and they ended up changing her tube out. It happened again this morning when I came in and she seems to be coughing a little, trying to get gunk out of her throat (or perhaps she is trying to get that pesky tube out). Those are such scary moments where we feel so helpless. I just want to pick her up and make it better. She hates being suctioned and cries sometimes which absolutely breaks my heart. Since she is intubated no sound comes out when she cries and It is so hard to not be able to do anything for her at those times.

I am so excited that tomorrow, the surgeons are going to have her stomach tube removed and will likely begin feeds. She will finally be able to start getting the benefit of the colostrum I pumped for the first week followed eventually by the milk. I continue to pump every 3 hours or so and so far, so good.

The most exciting development in the past two days is that Liviana has been opening her eyes more and leaving them open for quite a while. Prior to today I had seen little tiny glimpses of eyes (mostly prior to her surgery day) but never her eyes fully open. She is just so beautiful. I think her eyes are going to end up being big and brown like Miles's eyes but only time will tell.

Brad stays in NICU at night and Liviana and they have daddy/daughter bonding time. Aria and Miles are doing okay. There are some little meltdowns here and there, which we completely understand. Aria asked yesterday morning while on our way to Target if she could go see Livvy. I told here that Liviana was probably sleeping and Aria said, "Maybe she is up now". She loves her little sister already and knows she is sick and the doctor's are helping her (She always says, "Maybe Aria help too").

I think that is all for now. I will try to update everyday. We continue to appreciate the support, caring and prayers from everyone.

Amy

Day 8: Some progress, some new information, some poop

I know that technically Liviana is a week old today but I still consider this her 8th day since she was born only 54 minutes into the 18th. Some may say, Day 7 but I say Day 8 and as the haggered mother I hope nobody will be bothered by my counting.

Some Progress: After a very rough couple of days Liviana is starting to do a little better. They ended up adding Nitric Oxide in addition to the high frequency vent after her pulmonary pressures came back way too high at 70 following an echocardiogram. Following the introduction of the Nitric her pulmonary pressures went down to 38, which is great. it is doing just what it needed to do.

Her MAPP, which is the oxygen pressure she is getting is getting weaned quite a bit. She is down to 15 on her pressure and currently 38 on her oxygen percentage. Her blood gases have been great so they are able to move forward on her weaning progress as long as her Sats maintain (the oxygen saturation in her blood).

Liviana was running a fever of 101.6 a little over 24 hours post-op. They were unable to pinpoint the source of the fever so they called in Infectious Disease docs to rule out something viral. Her temp has since returned to normal but they are still wanting to make sure they have all of their bases covered. I know that both Aria and Miles have run temps when they were teething (although some docs swear that is not possible) so it would seem quite possible to me that her temp could have been the result of having major organs in her body relocated.....I'm not a doctor though.

Some New Information: It was discovered on the echocardiogram yesterday that Liviana has a Ventricular Septal Defect (VSD) in her heart. It is very small, which is why it was not discovered before, and both docs (the surgeon and neonatologist) have said that they usually close themselves within the first 6-months to a year. In addition, she has what is called a Hemivertebrae, where she has some abnormalities in her vertebae, estimated to be around T3-T5. The CDH, combined with the VSD and the Hemivertebrae is pointing to this being a the cause of a genetic disorder. We will eventually be talking with the geneticist in the next few days/weeks to help address this issue.

I have been assured that the VSD and vertebrae issue are not huge concerns but it is still hard to not worry horribly about our daughter's future health as it relates to the CDH and these additional concerns.

Some Poop: I was talking to Dr. M. yesterday afternoon and asked him at what point could we expect to see some bowel activity so we would know that it was working properly since the "move". He said he would not expect anything for 3-5 days so I should not be concerned at this point. It was no more than 5 minutes later, as they were getting ready to x-ray Liviana and were changing her diaper that she left a nice, big, mess for the nurses. They loudly announced, "We have Poop". I was so excited. She continued to poop even more on the blanket she was laying on as they were trying to change her. It was a magical moment and I know the CDH parents out there know exactly what I mean :).

I think that is all of the updates for now. As I have been here typing I heard them call the Respiratory Therapist to come lower the settings again for Liviana, as her blood gases are great again. I am eagerly waiting to see what she is graduating to this time.

Please keep her in your prayers. The doctor told me yesterday he would not say she is in the clear yet but she is making progress in the right direction. I told him to me, she is not in the clear until I take her home with me.

Please keep Little Ned,who is scheduled for his repair surgery today or tomorrow. You can follow their progress on the link at the side for Baby Dellinger. Also, please check our Cadenne's blog. She has moved to a new hospital and is making the lovely progress of going home soon.

Thank you all for your support and caring.
Amy

Day 6: "Suprised but not unexpected"

That is what the doctor told me this morning about Liviana's current condition. He said he was surprised she was having as much difficult as she is given how stellar she was doing before surgery but it is not unexpected for post-op, he just did not expect it with her.

She had a rough moment in the middle of the night and they seem to find she will get agitated and her sats drop and they have had to help her recover by increasing her vent, and one time bagging her.

They have given her blood, not a complete transfusion but still some assistance. They are hoping the increase in red blood cells will help her carry the oxygen through her system. Her blood gases remain okay to good and she has no sign of acidosis and has quite a buffer before they would be concerned about it.

I talked to the doctor for a while but I am drawing a blank currently on the rest of our conversations about Liviana. We are not in a danger zone and he says the next 24-48 hours will be important.

I am so frightened for my little Liviana....

A little shakey tonight.....

Liviana has had a rough night post-op. Dr. M. was not thrilled with her vent settings and her blood gasses began coming back too high. Suddenly, her oxygen saturation went haywire and they had to crank her vent way up. Pre-surgery her vent settings were around 24%. Post-op they just kept getting higher and higher. He decided to not mess around anymore and put her on a high frequency vent. He wants her to relax a little since she was still breathing over her vent and let her lungs fill and expand. The high frequency vent is big, loud and makes her little body vibrate. She will likely be on it for a couple of days.

She had blood coming out during her suctioning and they think that maybe her tube being moved down in surgery and back up after surgery irritated her trachea because the x-rays are not showing an internal bleed.

In the middle of all of the problems I was sitting in the chair watching, so tense and so afraid for my little girl and my lower back started spasming. Not good. I called Brad and he rejoined me and is ready for his night sleeping in the NICU with sweet Liviana. It will be hard to leave her tonight but I know she is in good hands. Dr. M. is staying the night and he and the Nurse Practicioner are all about Livvy this evening.

So, as you go to sleep please say an extra prayer for our little girl.