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.