Many Updates!

I apologize for the delay in posting. The past week and a half since Liviana has been home has flown by. She fits into our family perfectly. It is really like she has always been here to me.

Let's see....where do I start? Liviana is gaining weight wonderfully. At her weigh in last Friday she was 7lbs. 11oz, which was a gain of 1oz. each day. That is awesome since our doc said the average gain is 1/2 ounce a day. At her appointment today her weight was 8lbs. 1.4oz. That is a little more than 1oz. a day. She is eating and gaining so well. She is a little chow hound, nursing any chance she gets.

I am recovering from Bronchitis, which started the Sunday we brought Liviana home. She has remained perfectly healthy despite my illness. She is breastfeeding so she gets the antibodies for my illness which helps protect her. It is an amazing process.

She had her follow up with Dr. Cusick on Monday. He thinks she looks fabulous. Her x-ray was beautiful. I was stunned when I saw it. It looks like a completely normal chest x-ray of a 6-week old. I requested copies of the x-rays and I will post them soon. Her diaphragm looks completely normal, which Dr. C. was very proud of. He provided us with a referral and report to Dr. G. the orthopedic doc to address her hemivertebrae. Brad saw it on x-ray for the first time and was rather startled. From about 6 on up her veterbrae are all out of whack. I worry about this impact on her in the future and potential scoliosis or kyphosis. It is a 3 month wait for an appointment which will be good timing. Keep her in your thoughts and prayers please. We will see Dr. C again in 3 months.

I had also noticed that Liviana did not turn her head to the right very often. Dr. C. said one of his twin daughters had the same issue and made a referral to physical therapy. We likely just need to exercise her neck and strengthen the muscles on that side. I also worry that it is related to the HV but Dr. C. said he did not believe so.

We had our follow up cardiology appointment today also. It could not have gone better. Dr. F. said she looks great, he is not worried about pulmonary hypertension in her anymore and he could not hear a ventricular septal defect (yes, I guess they can hear it) so he said it is likely closed. He said he will see her in 2 years. I was pretty excited to hear 2 years and not 2 months or even 6 months. Two residents were also present and when they listened to her they also said they could not hear any sign of a VSD anymore. Isn't that awesome!

Liviana's reflux did seem to be pretty uncomfortable for her but the past 3 days she has been great. She is content all day and we have not had painful screaming sessions. She is so alert and loves looking around, cooing and chatting with Aria. The sun rises and sets with Liviana in Aria's eyes. She runs to her immediately when we come into the room and she gets worried when we go to appointments that Liviana is not coming home. She is going to be the greatest big sister. Miles has been so good with the new addition. Before Liviana arrived he was always being held and picked up and still nursing a few times a day. Since her arrival he has become a big boy and does not seem too bothered by the changes. He still nurses 1 or 2 times a day for a short period of time but Brad now puts him to bed and he rarely asks to be picked up. He is just so sweet. Aria and Miles have started getting along so well and playing so well together. They like to give each other hugs which is the cutest thing you could ever see.

Liviana is doing so well. I was surprised that I have not worried about not having monitors at all. I feel confident in my mommy instincts and my ability to recognize if she is having difficulty. It has been a magical experience having her home with us. I love getting up with her at night even if I am ill and tired. She has put life in perspective for me and for that I am grateful. I feel like she is an old soul. She has already been changed by her experiences in life and I can see that in her eyes. She is strong and has an introspective nature about her and I can't wait for her to grow and thrive even more.

I promise I will update more often. Now that I am feelling better the days will begin to fall into place. I have some cuddling and playing to do with Aria now. Brad is getting Miles to bed and Liviana is sleeping so it is Aria and mommy time.

Thank you for your continued thoughts and prayers.

Not Good Timing

My view of Liviana in her sling




We are sick! This obviously could not come at a worse time. When I came home with Liviana both Aria and Miles were sneezing and ending up with some "snot debris" (I don't know what else to call it). Thet both are better but I came down with a sore throat in the middle of the first night home. My sore throat has gotten worse and I am mildly congested. Because I am breastfeeding Liviana will get antibodies from me for what I have so I am hoping and praying she does not get sick because it could easily land us back in NICU.

She had her pediatrician appointment yesterday and sounded and looked great. The doctor was just amazed by her (I know, that word again). She could not believe how great she looked and how "normal" she looked. She said her muscle tone, strength and development was right where it would be for a 4 week old who did not spend their first weeks in NICU. They are wanting to keep a close eye on her weight. She is 1.1lbs up from her birth weight at 7lbs. 8oz and gained 1oz. since our discharge. She is nursing frequently but she may be burning more calories because of her rapid breathing. We go back on Friday for a weight check and the following Friday for another check up appointment. I expressed my concern about the Hemivertebrae and Dr. W. said that she has some teenagers who have unnoticed HV until they get an x-ray for something else and it is found. She said it likely will not effect her at all.

When we arrived at our appointment they immediately took us back to a holding room because they do not want us to wait in the waiting room with Liviana. They also took us to a special room that never has sick kids in it so she would not be exposed to anything. I thought that was great and showed the importance they are placing on her care and follow up. Unfortunately, her home is where the germs are right now. The doctor wanted me to just stay on top of her behavior, eating, sleeping, coughing, etc. I am to call them immediately if she shows any signs of illness that concern me.

The hospital called and said that Dr. Kerr reconsidered and wanted us to go ahead and see the cardiologist in a couple of weeks for a repeat echo. It will be good to find out what her pulmonary pressures are doing since that still is looming over us.

Our transition at home has gone very smoothly. The kids are just being wonderful. Miles is so, so sweet and likes to help me change Liviana's diaper. When she cries he says, "uh-oh". Aria can't wait to see Liviana when she wakes up or when Livvy has been sleeping. They have been helpful and loving to each other and their sister. Right now, I would say that three kids is a piece of cake but I know that it will not always be so simple. No matter what happens though I am so at peace and happy having Liviana home, healthy and here with our family that "I don't sweat the small stuff".

Liviana loves the sling which makes my life easier so I can still do things around the house. She is just so darn cute!

I appreciate all of your continued thoughts and prayers. I love reading your messages and knowing there are people out there cheering for Liviana.

Home Sweet Home!

I am sorry for the delay in posting. I have been enjoying my family being all together.

Liviana was discharged at 11am on Sunday. I could not be happier and more at peace having my entire family together under one roof. She seems like a perfectly normal, healthy little girl. I am still astonished that she had surgery to relocate 3 major organs on January 24th. I am astonished that she does not have complete lungs yet I feel and hear her breath as though she were born with them complete. She is a miracle to me.

The two days prior to her discharge she had decided that she was done with the nurses poking and prodding her. When anyone would come over and begin listening to her chest or anything else she would start screaming. As soon as they were done or I picked her up she would immediately stop. I have no doubt she was ready to go home. When I handed her to her doctor though for a picture, she was perfectly content and quiet. She knew what he had done for her. I forgot to have her surgeon, Dr. Cusick pose for a picture so I will get one with him next week at her appointment.

She has been wonderful since we got home. She is by far our best sleeper. She is a cuddley, sweet angel. Aria was SO excited to see her. The first thing she said was "She's so cute". She loves her little sister and even awoke today from a nap worried about her and wondering where she was. When I told her she was sleeping in her bouncy seat she wanted to go sit by her. Miles met Liviana 2.5 hours after she got home because he had been sleeping. It is the first time he has ever been around a newborn baby. He seemed very intrigued by her and wanted to pick her up right away. Sometimes he seems a little scared of her but overall I think it is going really well.

I can tell how happy she is to be home. She was "talking" to me and smiling this afternoon and it brought joy to my heart.

We have an appointment with our pediatrician tomorrow, our pediatric surgeon next week and a follow up echo and cardiology appt. the following week. She is a popular little lady, everyone wants to see her. She is nursing all of the time and I can't wait to see how much weight she has gained at her appt. tomorrow.

I sit and stare at Liviana when I hold her and I go back mentally to the day we got the diagnosis. It all seems so surreal, like it was someone else's experience that I was just watching. She spent 4 weeks in NICU but it seems like it was just yesterday that she was born. She was always meant, from the first day to be home with us, enriching our family.

She has taught us, she has challenged us, she has brought us closer together.


Her Doctor, She is so thankful

Her first car ride

A hug from her sister and momma

Love from Dada

Love from Aria

Love from Dooda

Love from Miles

Day 30: Preparing for Home

We have orders to go home tomorrow. It will be just 31 days after Liviana made her grand entrance into the world (30 days for those who don't count her birth day). I am still amazed by this little girl and what she had endured and overcome in her four short weeks. We are going home with just a prescription for Prevacid. That's it! I prepared myself before she even arrived for a 3 month hospital stay and some paraphernalia to accompany us home. I could not ask for any more or be more thankful for our little girl's health and wellness.

Her brain MRI was normal and her bone scan showed the hemivertebrae. The radiology tech was unsure whether she was missing one rib and only had 11 on one side. They said it was unclear on the scan. She did not have any other anomalies. We have an appt. with the geneticist scheduled for June as follow up.

Liviana and I stayed in the transition room last night so Liviana could nurse all night as she wanted. It was wonderful to be with her, nurture her and take care of her like I normally would. She is now down to just one line that is measuring her respiratory rate and heart rate. She had her NG tube removed yesterday and oxygen saturations monitor taken off today. My mom drove up last night after work to help with the kids this weekend since I will be at the hospital with Liviana and Brad worked most of the day today. She is a huge help and the kids were excited to know Dooda was coming to visit.

Liviana is exclusively breastfeeding. I have managed to make it through without her ever taking a bottle. I did not want to do anything to interfere with her learning to nurse and we would not be using bottles at home so I requested we avoid them all together. I am amazed (I know, I need to find a thesaurus and pick a new word) at how quickly she took to breastfeeding since she had to wait 3 weeks to even try nursing. We are feeding on demand and have scrapped the hospital schedule of every 3 hours. She seems to eat every 1.5 to 2 hours right now, which is great. She does have reflux difficulties after feeding some of the time but she should outgrow that difficulty. I am glad I have been through the silent reflux with Miles, as it has prepared me for what Liviana is experiencing. Had I not been through it with Miles I would probably be freaking out now and unsure of how to handle her pain. Of course at the time I know Miles reflux was horrible for him but it was preparing me for the future to come....isn't it strange how things work out.

We have an appt. with our pediatrician sometime this coming week and a follow-up chest x-ray and appointment with our surgeon the following week. I will of course be providing updates.

I ran out and purchased a new car seat today, as our old infant one was, well....old and ready to be retired. I felt giddy as I picked one out and took it to the car. It means she is coming home and I can hardly contain my excitement.

I want to apologize for the difficulty some of you may have experienced reading my posts. When I first became a mother I had a definite decrease in my brain functioning. Over the past 30 days that has increased dramatically and I feel like a bumbling idiot most of the time. It is a wonder I make it out of the house some days. I have reread my posts and found the use of "here" instead of "hear" or other grammatical or spelling errors. Please forgive the scatter brain. As an example, one evening, after coming home from the hospital, getting the kids fed and Miles to bed I prepared to head back to the hospital for Liviana's 9pm feed. I decided to take Brad's car and even had a conversation with him about the location of his keys. I headed out and promptly jumped into my vehicle and proceeded to jam the keys into the ignition, wondering why they would not work. I was in the wrong car! So, as you see, many times I day I do bizarre things, many of which I am too embarrassed to share. I am sure that this syndrome will continue for several weeks and months, so in advance.....I apologize :).

I think that is all for now. Little Miss should be waking up soon for her next meal. I am beyond excited about tomorrow and can't wait to update all of you with her homecoming pictures and story. I will look up some synonyms for Amazing later tonight!

She rests in her cocoon awaiting the time tomorrow to spread her wings and fly!

Day 28: A couple more tests

I am currently sitting outside an X-ray room door listening to my daughter scream her head off while she gets a bone scan. They would not let me stay in the room which is probably good because I would have grabbed her off the table and run out with her. Following the bone scan she is getting an MRI of her brain. The geneticist ordered these because of her CDH, VSD and Hemivertebrae to be sure there were no other anomalies.

They originally had the MRI scheduled for Friday morning and if needed would give her sedation, keeping her from eating 4 hours prior. I expressed my concerns about withholding eating and sedating her during the 24 hour period that we are doing all breastfeeding and planning on a weight gain and subsequent release. They decided to do the MRI today instead as a result.

I will let everyone know when we get some results.

The plan is for me to begin our first 24 hour period tomorrow morning, stay with her in the transition room tomorrow night and Saturday night and go home on Sunday. I'll keep you all posted. I am about to lose my computer battery so more later....

Amy

Day 27: Saturday? Oh My!

When I went up to feed Liviana last night the nurse immediately said, "Congratulations". I thought, what for. She said, "I hear she gets to go home Saturday". What? Saturday? That is so soon. Of course I am beyond thrilled to have her coming home but I feel so unprepared suddenly. I feel anxious about her being home without the monitors signaling me to a problem. What about the nurses, how will I do it without them? Is the house ready? Can I completely sanitize and steralize the whole place in time for her arrival? What if she gets sick, it could be devastating. So many thoughts race through my head.

The nurse added that I need to get 24 straight hours of feeding in first so I am hoping that 24 hours will begin on Friday morning and end Saturday morning.

I can't believe Livvy will be coming home just 4 weeks after her birth. It still amazes me and I still think she is just a miracle baby.

I have to get ready to head to the hospital. I'll post more later.....

Day 26: Great News!

Liviana's repeat echo showed that her pulmonary pressures are half what they were last week. They are now 30. That is still high but it is obvious that they are improving on their own. They need to be down around 5 or 10 and I am optimistic she will get there. She is healing, growing and getting better day by day.

Dr. K. said that he needs to see her take all of her feeds by mouth in a 24 hour period of time and be showing consistent weight gain and she can go HOME! It will likely be no more than 7 more days. Can you believe it!! I am exclusively breastfeeding her and she has not had a bottle and hopefully we will be able to keep it that way. I just need to figure out a way to be there for each feeding day and night. Right now, I am there for 3 feedings a day and the rest she is still getting through gavage. I have no doubt that she would easily breastfeed during all feeds and gain weight. She is a chow hound and is not shy about eating at all. She has consistently been gaining weight since I started nursing her this past weekend. Dr. K. said her weight is right where it should be for her age and birth weight and maybe a tiny bit higher.

The VSD is not an big issue and will likely close on its own. We will follow up with it a few months after she goes home. Similarly, the hemivertebrae is not a concern at this point either. He said he will notify the orthopedist but they likely won't want to see her until she is walking. I had a huge list of things to talk about and will mark more off tomorrow.

She is pretty uncomfortable with her reflux after eating. Like Miles she has silent reflux, where she does not actually spit up. CDH and reflux go hand in hand for obvious reasons. She is currently on medication and we will continue that and consider some other medicinal options if it seems to get worse. Dr. Cusick told me that the NG tube makes it worse because it keeps the esophageal sphincter from closing. I hope that it improves when we get that tube out because she seems to be in agony for about 5-8 minutes after eating.

We had a new sitter start on Monday and she is great. She has been a nanny for many years so she does those extra things like writing a note telling me what they did all day and sending me text message updates on them. The kids enjoy her and that helps me relax when I am at the hospital. Being able to spend this time with Liviana while she is awake and active helps me feel like a mom to her. I know that sounds weird but for so long it felt like she belonged to the hospital and now I feel like she belongs to me.

I can't believe she will be coming home soon. I'm not sure she knows what kind of a zoo she will be living in. She is so loved and Aria can't wait to have her home.

More tomorrow.......

Day 25: Loved her Bath

Liviana loved her swaddle bath, that is, until I got her out, at which point she protested loudly. She was completely content and now also clean.

Nursing is continuing to go well and the nurse today explained the "pathway" to discharge as it relates to feeding. Yes, that is right, I said "discharge". I am hoping we can work up to this weekend at which point I will nurse her most of the feedings if possible so we can get her home. We of course have a lot of "going home" issues to discuss and long-term health issues but the eating is the only thing still keeping her in the hospital.

Dr. Cusick, our wonderful surgeon talked with me this morning. He always stops by and checks on her even if he is not on rounds. Today he talked to me about malrotated (I edited this, my tired brain mistakenly said malpositioned) bowels and twisted bowels. Basically, all CDH babies have malrotated bowels. This is not necessarily an issue unless they become twisted. When surgery is done with the open surgery method the scar tissue helps adhere the bowels and keep them from twisting. Because Liviana's surgery was done laproscopically she does not have the benefit of the scar tissue. Dr. C. consulted some other surgeons in Portland and elsewhere about whether they were doing the abdominal surgery as a preventative measure against the twisted bowel following laproscopic hernia repair. They are not. He agreed with their thoughts and will not do it, as it is only preventative and it has a 15% rate of complication, which he is not comfortable with. I also shudder at the thought of Liviana having another surgery now. I greatly appreciate Dr. Cusick and his partners exploring the options that are best for our little girl. I also found out today that he goes down to the Dominican Republic each year and performs surgeries on children for free. His goodness extends well beyond the hospital.

Liviana has her repeat echo tomorrow morning. I am so anxious for the results. I hope and pray that her pulmonary pressures have decreased. If they have not they will discuss the options including Sildenafil.

I have given Dr. Kerr the heads up that I want to discuss the Ventricular Septal Defect and Hemivertebrae issues this week. Of couse I will share what I discuss with you all :).

Day 24: Nursing Success

Last night I went up to be with Liviana and nurse her. Prior to this time she had nursed for 7 minutes at the longest and that was on and off, not seven consecutive minutes. I was pretty anxious all day waiting to see here after Brad returned from work in Lincoln. She seemed happy to see me and to my amazement and joy, latched on and began nursing like it was something she had done from her very first moments of life. I can't even begin to express the love and joy I felt, looking down at my little girl. Her beautiful little eyes would look up at me from the side and then roll back with content as you often see breastfeeding babies do. She ended up nursing for 25 minutes and then fell asleep peacefully with a full belly and heart full of love from her momma. I returned this morning and she did the same thing, like a nursing pro.

Brad and I are going today to give her her first REAL bath. I will take pictures and post them later. It is Brad's birthday so I know that giving his little girl her first real bath will be a special gift.

As I held Liviana last night, looking at her sleeping peacefully, I felt her breath. I was so struck by the miracle of it all. Four months ago when I was carrying her I worried every day about her survival, about that first breath she would take, about her surgery and about her lung development and function. Something as simple as a breath is taken for granted but these little ones fought hard for theirs. Her breath means survival, her breath means fighting and her breath means life. All of these little ones, whether they lived 10 minutes, 10 days or 90 years are all survivors and all fighters. CDH is a devastating and frightening birth defect. So many babies don't make it after fighting hard for their breath. The mortality rate is said to be around 60%. Liviana is one of the lucky ones and each one of those babies who have become heavenly angels before her and after her look down upon her, smile and wish for her to go on and increase awareness about Congenital Diaphragmatic Hernias.

Thank you to everyone who follows Livianas journey and offer their care and support. You don't know how much it does for us to read your comments and know that you are thinking and praying for Liviana. Please take time to visit the other pages at the right and additional links on their pages and leave them comments as well if you would like.

Day 23: Learning to Eat

Liviana is continuing to make great progress. She is now on the final "level" of feeding, which is feeds every 2 hours over 1/2 an hour. They did lower her quantity a little since she has lost the weight she gained post surgery. She gets around 68cc's (a little more than 2 ounces). I got the go ahead yesterday to begin nutritive breastfeeding. I was so excited, as was Liviana. She did great the very first time. She nursed for about 7 minutes, although not continuously. I went up again late last night and attempted again. She got three little gulps and promptly dozed off. I let her sleep and cuddle with momma since I think the earlier feeding took a lot out of her.

They are repeating her echo on Tuesday and I HOPE her pressures will be down. One of the cardiologist is interested in seeing her because he has developed an interest in Pulmonary Hypertension (I guess he can't just stick to the heart). We will expect a visit from him soon.

She continues to have sats (oxygen saturations) in the high 90's which is just what we want to see. She does still breath a little rapid at times but that too has improved since removing the nasal cannula. They check her respiratory rate before I nurse her each time because they don't want her to be over 75 because it increases her risk of aspirating while she eats. I have a little chat with her to breath slowly before they do the check and give the go ahead for nursing.

She is beginning to gain weight, after losing all of the post-surgery weight. She is now back up to 7lbs. 6oz., 1lb. over her birth weight. I'm hoping she takes to nursing quite easily, starts gaining weight and heads home :).

She has become so interactive and interested in what is going on around her. She has cooed at me a couple of times and loves her mobile. I am going to find some other things to visually stimulate her while she kicks back in her crib. They had a volunteer cuddler come around yesterday morning interested in holding her. The nurse called me to see if it was okay and I shouted, "YES" into the phone with enthusiasm. It breaks my heart to think of her laying there alone when I cannot be there and I was thrilled that she could have some attention and interaction from someone. They said he read her a book and she LOVED it.

Baby Kelly is doing much better. Her mom gets to hold her again and things seem to be much improved.

I think that is all for now. More later on our little miracle girl.

Your Thoughts and Prayers please

Sara, who has posted comments on the blog was expecting her CDH babe in April. They learned on Friday that he has passed away, she was 31 weeks pregnant. I cannot imagine the pain she is experiencing and I ask everyone to keep her and her husband in your thoughts and prayers. Anthony is now a Heavenly Angel above looking down on all of us.

Anthony Owen McKenna
Rest In Peace sweet boy

Day 20: Why all the pictures mom?

I don't think Liviana quite understood why I was so anxious to take pictures of her. She went along with it though, smiled and played along. She must of heard us talking and realized that the pictures were going to be posted because she promptly pulled out her NG tube so you would all get to see pictures of her face completely tube free. Much to her chagrin, they replaced the NG-tube, which she accepted before falling asleep on momma again. Here are the pictures she wanted me to share with you of her nasal cannula-free, breathing-on-her-own self. They are pre-NG tube removal, after NG Tube removal and after the new tube was placed and she dozed off. Her oxygen saturations never dropped all day. She truly amazes me. More tomorrow....It's off to bed for me.

Day 20: Room Air Baby!

I was getting the kids dressed this morning to bring some more milk to the hospital for Liviana when Dr. Kerr called. He said, "I'm going to try Liviana on room air today and take out her nasal cannula". I said, "oh wow, when were you going to do it"? He said, "I already did, she is doing great". I was so excited! He said yesterday he did not think she needed to be on it anymore so I'm not surprised but it such a huge, exciting step. She is breathing on her own and maintaining her saturations just fine. If she does have any decreases they will likely come when she sleeps, when she breaths shallower but so far, so good. I am Giddy! I dropped her milk off but because the kids were with me I could not go see her (Miles isn't allowed in NICU). I will be up there later this afternoon around 3pm and I can't wait to see her little face free of the cannula. Now, she only has the NG tube for feeds and her monitor probes (heart rate, respiratory rate and oxygen saturations).

Her echo yesterday did show that her pulmonary pressures were back up to 62 from 40. Dr. Kerr is not too worried just yet. He said that some of the other indicators they look at like blood flow between ventricles from left to right looks great, whereas if her pressures were a problem it would be from right to left (I believe that is what he said, my heart functioning and anatomy knowledge is a little weak). He is confident that her pressures will come down on their own as she grows and develops since she is constantly growing new lung vessels and sacs. He was less apt to consider Sildenifil at thsi point because it is not tested in babies and there has been and FDA warning about hearing loss. I hope she improves her pressures on her own and we don't have to consider the medication. Thoughts and prayers are needed.

I brought up the "H" word to Dr. Kerr yesterday....Home. I wanted to know what we needed to accomplish for her to come home. The nasal cannula issue was checked off this morning so feeds is all we have left to do. She is still on 75cc's over 1 hour, every 2 hours right now and they want her to get down to over 1/2 hour before we start actual breastfeeding. She threw up quite a bit yesterday when I was there so they are taking it slowly with her. They have elevated her bed and hope that will help with her reflux (a very common issue with CDH babies). Once she gets down to 1/2 hour feeds we will start feeding with breastfeeding and bottle (when I'm not there). I hope it goes well. Right now she does okay with non-nutritive but I think she is upset about the NON part. She wants milk and she will get a tiny bit and then it stops (I pump before working with her) and she gets mad. It is somewhat cruel to be "nursing" her without the milk and she is not too happy about it. I think once she is getting a real supply she will take much easier to the process. Wish us luck on this issue. It is the only thing standing between us coming home. THey are not focused on the quantity she will be getting, just that she is gaining weight. They will let her demand feed and not put her on a schedule. If she is like Miles and Aria her schedule is going to keep everyone pretty busy with feeding her.

Thank you to everyone who responded with babysitting assistance. I am talking with someone tomorrow about filling in some of our babysitting needs. I am very optimistic that it will work out fine. I don't think we will need her that long since Liviana seems anxious to get home. Brad ended up being able to come home for quite some time yesterday in between appointments since one was cancelled due to weather (thank goodness for that snow yesterday).

I will post pictures of our cannula free girl when I get home tonight. I am SO excited to see her. My last conversation with the nurse was great, she was maintaining her oxygen between 96 and 100.

More later.....

Day 18: A Quiet Day

Today was a quiet day for Liviana. She sleeps, she looks around, she chews on her handss, she sleeps, looks around, chews on her hands....you get the picture. She is just so darn cute I can hardly stand it. I think she is going to look like a little female Miles.

She remained on room air and she has been turned down to 1.5 liters from 2 liters. The only time she de-sats is when she is sleeping, which is common. Her de-sats are not bad though, she will drop down to 87% or so and then come back up on her own.

Her feeds are increasing and she tolerating them fine. She had a couple of spit ups but nothing that is abnormal for most newborns, especially ones that are laying down most of the time.

I worked with her on nursing again. She did great today. The second time I nursed her she got a little milk (which is not really the objective at this point) and she got mad when she did not get anymore. I suspect in the next couple of days they will begin having me nurse her for nutrition. I think that will make her very happy.

She is a little cuddler and by far my best sleeper so far :).

I will borrow from Tricia, Cadenne's mom and solicit some help with babysitting. I realize that very few people who read our blog are actually in our area so who knows how it will go. We are in serious need of some more babysitting assistance. We have a sitter but she is not available all the time, as she has another job and a life of her own. Tomorrow, we don't have a sitter at all and I must be at the hosptial for several hours a day to work with Liviana on her nursing and also just be there as momma. The time at the hopsital is just as much for me, as it is for Liviana. I begin to feel physically ill at the thought of not being able to see her and help her along with her nursing. If you are in our area and are available or know a great babysitter please let me know. This is one of the difficulties of moving to a city without family and friends.

I think that is all for now. I added the picture of Liviana to the top of the page because I love seeing her little face right when the page appears. She would make you smile even bigger in person.

Day 17: She Continues to Amaze!

(I typed most of this on Sunday, hence the Day 17)

Where do I start with our little one? We met with Dr. A. yesterday, one of her neonatologists. He said she was doing really well but he was concerned about her pulmonary pressures. After a repeat echo yesterday she was still in the 40's with her pressures. They should be in the 20's. He talked to us about the seriousness of the issue and that it can be fatal if left unaddressed for a period of time. Basically, she has pulmonary hypertension. She responded positively to the nitric oxide but they also wanted to discuss the option of oral medication. As expected, they would give her Sildenafil, which is better known by the name viagra. It is commonly used for pulmonary hypertension. It has not been that studied with CDH and he said there is some concern about long-term use and hearing loss, although none of it is conclusive. He said we had time to discuss it because they would not start it right away and he also wanted us to talk to the cardiologist first. She had been sitting around 30% air since extubation which was not bad but was not the greatest. My thoughts of her being able to lose the nasal cannula were shot when Dr. A. mentioned she could be sent home with oxygen.

Fastforward to last night. I went up late to spend time with Liviana and begin some non-nutritive nursing sessions (more on that later). As soon as I picked her up and began our practice session she began satting high around 99/100. That means that her oxygen saturations were 99 and 100%. They came in twice and turned down her oxygen. She ended up at 28%, she was at 32% when I got there. When I left her sats were still at 97 and her oxygen was 28%.

When I came in today a nurse was rocking her. Her oxygen had already been turned down once and got turned down two more times while I was there because of high alarms again. Dr. A came by and told me that he was thinking of giving her Nitric Oxide through her Nasal Cannula since she was still sitting at 30% and they would have time. I said, "well, she is actually closer to 21% now (which is room air)". He took a look and sure enough, she was at 23%. He was pleasantly surprised and said that he guesses he will have to change his plans and nix the idea for nitric oxide. He is hoping this is a further sign that she is still healing and improving and maybe her pulmonary pressures will follow on their own. He has ordered another echo for Monday. He is holding off on any decisions about the Sildenafil until the echo results.

He also gave the go ahead on Saturday for non-nutritive nursing although he said he would be fine if she got just a little bit. He said he would anticipate starting real nursing sometime this week. Liviana is now on every 2 hour feeds which is helping get her used to how she will be nursing. I am worried about my time availability to nurse her as often as she will need. She will end up taking a bottle many times since our sitter is not available all the time and I won't be able to be there.

She got her arterial line removed, which is great. She is just down to her feed line, which is disoonnected between feeds and her monitor lines (heart rate, respiratory rate and oxygen saturations). She is so easy to get in and out of the bed and cuddle and hold. Sunday night when I was holding her the nurse said her saturations immediately go to 99/100, her respiratory rate goes down and her heart rate goes down. She knows her momma.

She has been on room air now since early Sunday although she is still getting the 2 liters of air flow, she is not getting extra oxygen. When she gets upset, or has a spit up, she still needs to get bumped up to 23-25 or so for a short period of time.

She was more awake on Sunday than she has ever been before. She as so bright eyed and interactive. It was a wonderful time with her but it is also making it harder and harder to be away from her so much. We need to get our little girl home so we can all be together as a family.

Liviana has a mobile over her crib which she seems to like watching. I asked yesterday if she could use a bouncy seat or something similar to help her sit up and observe her environment more. They are going to have the Developmentalist bring something down for her.

I can't get to the hospital until 3pm today (Monday) because our sitter is working. Brad will try to get up there between appointments to spend time with her. It is going to be a long, hard day away from her but I'm sure I will call and bug the nurses for updates often.

Little Kelly is doing better. Thank you for keeping her in your thoughts. She had her eyes open yesterday and it sounds like things are improving.

Thank you for your continued thoughts and prayers.

Day 15: Look Ma, No Tube!

Liviana was extubated around 10:00am this morning. All went off without a hitch. They gave her a nasal cannula with medical air at a low rate. She will likely (hopefully) be taken off of it tomorrow or Sunday.

Right after she was extubated and put on the nasal cannula and for some time afterwards she was hitting 99 and 100 on her oxygen saturations on a much reduced level (1 liter vs. 2 liters). While Dr. K. did not doubt our little "rockstar" (as the nurses call her) he thought that the line they had her air running into may not have been calibrated correctly and asked them to humor him and try one of the other lines. When they switched it her sats went to a more normal and expected level in the low/mid 90's. She is still a "rockstar" though.

I just can't believe that it was just 2 weeks ago that she joined us in this world. She is doing so well and I tell her all the time how proud I am of her. They are continuing to up her feeds and hopefully by Sunday or so we can begin introducing nursing to her. She has been off morphine since last night at 8pm and has not had any pain medication at all since then.

My mom (Dooda) went back to Wichita this afternoon. The kids are going to miss her so much. We have a babysitter to help out so I can be at the hospital so hopefully all will run smoothly.

Thank you again for your continued thoughts and prayers. Please keep little baby Kelly in your thoughts. She is in the room next to Liviana and went from doing great, nursing and getting ready to go home to being placed on a vent and bagged today. She is fighting a nasty recurring infection that resurfaced a few days ago and her little body seems to be struggling quite a bit with it. Her poor mother is up here all the time and they had to make her leave to go eat. She does not speak English and I'm sure that further increases her fear with the situation. Please keep them in your thoughts.