Off the IV

She loves her binkie.

Ciara is doing well again today weighing in at 1lb 13oz. She is completely off of her IV's and is on only breast milk. They are fortifying my milk to add some calories. She is still intubated but she is not on the ventilator. She is on pressurized CPAP so she is breathing on her own but it gives her a little extra push. She will continue to be on this until Friday. She is going to get her eye examination on Thursday to check the retinas. The doctor says it is very stressful for the baby and it will help to keep her intubated just in case she needs to go back on the vent. It is common in preemies to have the retinas stop growing and get inflamed. If this is the case she will need laser surgery. The doctor does not feel that she is as risk and feels very good about the exam. There is another baby here born at 25 weeks and she did not require the surgery. She will have these eye exams every two weeks until her retinas are mature. Her heart rate is still elevated. They believe it is the caffeine. Some babies do not metabolize it well. They are going to try smaller doses and hopefully get it adjusted for her. She is getting 5cc of breast milk per hour and they are increasing it .5cc every 12 hours until they reach 7 cc and then hold it. She seems to be tolerating the feedings well. Please continue to pray for her.

Taking her care into her own hands

Ciara is doing well again today weighing in at 1lb 13oz. She is growing! She is still on the ventilator, but she decided earlier today that she was going to extibate herself. They decided to let her go for a little bit to see how she would do but she got tired so back on the vent she went. They still plan on keeping her on until Monday. They started her feedings again this morning and she is getting 2 ml every hour. I'm sure she's happy to be getting fed again. I know I am happy. She seems to be doing well on the ventilator and hopefully she can go back on CPAP soon.

Another day on the vent

Ciara is doing well today weighing in at 1lb 12 oz. She lost 4 oz since yesterday so my assumption of water retention was correct. She is still on the ventilator, but doing well. She is still not eating but they are going to start them again tomorrow. She is still on the antibiotics and she will continue to be on them for 5 days. Her blood cultures have all come back negative. Praise the Lord! They must be working for her because her heart rate was down to the 150's. She is such a trooper. She amazes me more and more every day. She is such a miracle and I thank God for such a precious gift. Please continue to pray for her.

Some trying times

Sticking out her tongue.

Crying.

Ciara is having a hard day today. Believe it or not she weighed in at 2 lbs this morning! I have a feeling a lot of that is fluid. She had to be intubated again yesterday. She was having a hard time breathing on the CPAP machine so they tried her on a Sigh Pap machine. Which is just like the CPAP only she got 20 extra breaths per minute. She still showed that she was tired so the doctor decided she needed to go on the ventilator. She will probably remain on until Monday and then they will put her back on CPAP. They have stopped her feedings because they believe she has an infection. She was put on antibiotics this morning and started on albuterol treatments. She was wide awake for our visit this evening. The nurse told me that she doesn't know she's not getting fed, but I think she knows. Every time I put my hand in the incubator she tried to put it in her mouth and she just sucked and sucked on her binkie. As a mother I think she is hungry. Hopefully she will show some signs of improvement and they can start the breast milk again. Please pray extra hard for her tonight. It is definitely starting to get to me that I can't hold her or be near her. The doctor told me not to come up everyday that I will burn myself out, but I can't stand to be away from her. I don't spend all day up here, I only stay a couple of hours. But he is still worried I am doing too much. I keep telling Corey (because he agrees with staying away) he is not a mother and it's hard for men to understand wanting to be with your baby all the time. I miss her when I am not here, but I miss her when I am here too.

More Kangaroo

Using her binkie

She's as big as her pack of wipes!

Ciara is doing well again today weighing in at 1lb 12 oz! Praise the Lord! She is still on breast milk feedings and she is up to 4.5 ml every hour. She was on the nasal cannula oxygen for 2 days straight but was put back on CPAP early this morning. Her heart rate has come down. Thank Jesus! It is running in the 160's to 170's. They can't come up with any idea why it was up except for the fact that she does not like to have the CPAP mask on her face. So she already has the Anthony temper. She had another echo cardiogram this morning and the ductus is completely closed. Another reason to praise the Lord. Their plan for the next couple of days is to wean her off of her IV fluids and have her totally on breast milk. They will slowly increase her feedings .5 ml and do it as tolerated. It may take a couple of days. I'm sure it will feel wonderful to get that IV out. I know I couldn't wait to get mine out. I got to do another kangaroo session today and it felt wonderful. She did well and her oxygen rate went up to 97%. She was on antibiotics but her blood cultures came back negative so they discontinued them. Please continue to pray for her. They are working.

Daddy kangaroo

First let me apologize for worrying everyone by not updating the blog. I was having some computer problems. I'm ok.

Ciara is doing well today weighing in at 1lb 11oz! She has had a couple of trying days. Friday Corey came with me to visit her and he finally got to experience kangaroo care. Ciara just stared at him the entire hour. I said either she was thinking "I love daddy" or "What is that!" He really enjoyed holding her and it was just as gratifying for me to see. She seemed to tolerate her session well. On Saturday I went to visit her and her heart rate was high. It was ranging in the low 200's. She also had a crying episode while I was there and her heart rate went high and her saturation went in the high 60's. She finally calmed down when I put my hand on her back and read her a story. But she had this fit for about 20 minutes. It was really upsetting for me to see her like this and not be able to control it. Then after this fit she had several apnea (when she stops breathing) episodes. The nurse told me it was normal for her to have them because they stopped giving her caffeine thinking that it was making her heart rate go up. I visited with her some more and made sure she was ok and then headed home. I was upset about her so I did cry on the way home. I thought and worried about her all evening and this morning. Well you must have been able to see the worry on my face because the doctor asked me what was wrong. He then sat with me for quite a while and explained the possibilities of why her heart rate is up. It is possible that she is uncomfortable on the CPAP machine, or that the ductus has opened back up, an infection, or that she is just having arrhythmia's. He continued to come back to Ciara's bed to make sure I was ok. He did call me a "high maintenance mom" and told me I worry too much. I know he told me not to worry unless he is worried but it is very hard for me not to worry. He is a very nice doctor and he is doing wonderful things for Ciara. I will try not to be such a worrier. Today was a much better day for her and she didn't trip the monitors at all while I was visiting. Right before we left today they switched her from CPAP to the nasal cannula oxygen to see if that would bring down her heart rate. It is possible that she was getting aggravated with the mask being on her face. We will see in the morning. Please continue to pray for her strength and for mine.

P.S. There must be a problem with the site this evening I couldn't load any pictures. I will try tomorrow.

A big day

Ciara is doing well again today weighing 1 lb 10 oz. She had a big day breathing wise. Because she is doing so well on the CPAP they started the process of weaning her off. She will do 6 hours on the CPAP machine and then 6 hours on just nasal cannula oxygen. I got there today just as they were switching her to the oxygen and she tolerated it very well. Her sats were in the low 90's. They did another ecocardiogram today because her heart rate has been very high. Last night it was running in the 200's and this afternoon it was in the 190's. The echo was fine. It showed that the ductus is still closed. So it could be two things. Either she has an infection or her caffeine levels are to high. They started her on antibiotics and checked her caffeine level to make sure. We'll see tomorrow when her cultures come back. She is still on 2.5 ml feedings every three hours and tolerating them well. I did not get to do the kangaroo care today because she had such a busy day. Maybe this weekend. Please continue to pray for her and that her heart rate comes down.

Here we go again

Aaliyah in her birthday car

Ciara is doing very well today weighing in at 1lb 10oz. She is three weeks old today! Praise the Lord! She had a bout of reflux last night and spit up one of her feedings. So they stopped feeding her last night and then resumed 2.5 ml every 3 hours this morning. I always hoped that my second child would not have reflux because we had such a hard time with Aaliyah. She is still on the CPAP machine at 32% oxygen. I haven't got to hold her since Sunday. I did get to hold her for a minute while they changed her bed today though. She got very excited after I held her on Sunday and required more oxygen. So the doctor does not want to stimulate her too much too soon. He told me today that if she is having a good day tomorrow I can hold her. Hopefully holding her tomorrow will help stimulate some more milk. My supply is starting to dwindle. I didn't go see her yesterday so I really enjoyed my visit today. Please continue to pray for our baby girl. I can't thank you enough for your kind words and prayers!

Mommy's down

I just wanted to post a little note. I am not feeling well today so I didn't go see Ciara. I'm fine I am just in quite a bit of pain so I stayed home to rest. I got report on her this morning though and she is still doing well. She is now 1lb 9 oz and they increased her feedings to 2.5 ml every 3 hours. I will post some more pictures tomorrow after my visit.

Some more kangaroo

First let me start by apologizing for not updating the blog yesterday. I was so tired after my visit with Ciara that I went home around four o'clock to take a nap. Well my nap turned into an all night sleep. I slept until eight o'clock this morning! My mom took Aaliyah overnight last night so I got some much needed rest.

Ciara is doing well again today weighing in at 1lb 7 oz. She is still receiving breast milk feedings. She is back up to 1.5 ml every three hours. She was taken down to 1ml every three hours because she had some bleeding with a feeding. She is still on the CPAP machine and the nurse that had her last night said she had her down to 21% oxygen, but she was back up to 30% during my visit today. I went during her cluster care time and changed her diaper. We weren't supposed to be able to have another kangaroo session until Monday, but Dr. Hassen told me she was having a good day so I could hold her today. Corey was again not with me. I tried to talk him into coming with me but he wanted to work on his trailer. The doctor said we can hold her every other day so maybe he'll hold her on Tuesday. Please continue to pray for our angel. God is good!

A wonderful surprise!

Aaliyah doing her cheesy smile last night.

Ciara is doing well again today weighing in at 1lb 8oz. She is still getting her feedings every 3 hours and is still on the CPAP machine. They discontinued her antibiotics this morning because all of her cultures have been negative. I went during her cluster care today and got to change her diaper. I also got a wonderful surprise today. Dr. Hassen came over to tell me how well Ciara was doing and he told me I could hold her today if I wanted. If I wanted? Who is going to say no to that? Unfortunately Corey was not with me for the visit today, but I got to hold her for about an hour and a half. It was absolutely wonderful. Words do not even come close to describing it. She loved it as well. Her oxygen level went up to 97% while I was holding her and it stayed up that high for a long time. She really liked being on my chest and you can tell she was trying to find my breast to eat. I of course had lots of tears of joy, but I tried to stay as calm as I could because I didn't want to upset her at all. She tolerated the kangaroo care very well and hopefully we can hold her again soon. I thank the Lord several times a day for giving me such a precious gift. She is truly a miracle. Please continue to pray for her strength and health.

A smile for mommy

She was smiling at her mommy!

Well today is another good day for the Anthony family. It is day 4 on the CPAP machine and she shows no sign of coming off. Over night her oxygen rate was low and her CBC came back abnormal with low platelets. So the doctor started her on a round of antibiotics just to be safe. Her CBC this morning was normal but he is going to finish out the antibiotics just in case. Other than that she is doing very well. They increased her feedings to 1.5ml every 3 hours and will continue to increase them daily if she continues to tolerate them. I went during her cluster care time today and I got to change her. As you can see in the picture she smiled at me several times. I know that they are not real smiles yet, but they made me just as happy. She probably smiled for about a minute on and off and then she got tired and closed her eyes. I saw Dr. Hassen again today and he says so far everything looks good for Corey and I to hold her on Monday. Praise the Lord! I can't even explain how excited I am to hold our baby girl. Monday is also Aaliyah's birthday so it will be a busy day for us!

Please continue to pray for Ciara. We are so blessed to have such wonderful friends and family.

Day 3 on CPAP

I can't believe it but Ciara is still fighting so hard. Today is day 3 on the CPAP machine! She did have those 2 episodes of apnea last night, but after I left she calmed down and hasn't had another one since. She is 1lb 8 oz today and they increased her breast milk feedings to 1ml every 3 hours. And some more awesome news: if she continues to do well Corey and I can start kangaroo care on Monday. How wonderful it will be to hold our little girl! I went to visit her during her cluster care time today so I got to change her. Since she doesn't have a breathing tube in you can hear her whine. It is a wonderful sound. While I was changing her diaper she looked at me quite a bit. She got excited while I was doing that and her oxygen rate dropped to 82%. So I hurried up and finished and once she calmed down her oxygen level went back up to 95% and it never went below 92% my entire stay.

We are so blessed to have a daughter that is such a fighter. Praise the Lord! Please continue to pray for our angel. God is extremely good to us.

Also, thank you so much for all of your comments. I feel very loved.

Day 2 on CPAP

Ciara is doing better than I could have ever hoped for! Praise the Lord! She is such a miracle and I praise him for such a wonderful gift. She weighs 1lb 7 oz today and they started feeding her again. She received 1ml of breast milk at 2 and then she will get another 1ml at 8. She seemed to tolerate the first feeding well. She is still on the CPAP machine at 25% oxygen. I never in my wildest dreams thought she would be on it this long. She did have 2 bouts of apnea while I was there this evening for my visit so she is getting tired. But who would've thought she would be on for 2 days! Dr. Hassen is very pleased with her progress and if she does have to go back on the ventilator it will get easier each time they put her on CPAP. Her blood culture came back negative this morning so they discontinued her antibiotics. They were able to take the IV line out of her belly button and put one in her arm. She will still receive her IV fats until she is on regular feedings. She rested the entire time I was there. I haven't seen her eyes in a couple of days.

I had a hard time leaving her today. I was there about 3 hours and I usually only stay for about an hour. I overheard the nurses and doctor talking about a baby that had just been born. Unfortunately the baby was born too prematurely and they felt it was going to die. I also overheard the parents and the pastor baptising the baby. I do somewhat know what those parents are going through. Corey and I had prepared ourselves to loose Ciara so I know how hard it must be for the parents. I wanted so badly to go over and try to help but I know that it is a private time. Please put this family in your prayers tonight. What a horrible thing to go through.

Ciara is thriving and being such a fighter. Please keep praying for her. God is good!

Off the ventilator

On the CPAP machine.

Ciara is having another good day weighing in at 1lb 5 oz. Praise the Lord! I was very surprised this morning when they called me with report. Dr Hassen took another look at her x-ray and doesn't feel that Ciara has a leak in her lung. There was a different doctor on staff last night and after consulting with him they decided to take her off the oscillating ventilator and put her on just CPAP. She did well most of the day and her oxygen level stayed at about 90%. I just called to see how she was doing and she is down to about 88% so she may not be ready to come off the vent just yet. Dr. Hassen told us that most premies her age go off and on the vent several times before they get it themselves. I would not be surprised if they put her back on over night. She must have been concentrating really hard on breathing during our visit today because she didn't open her eyes at all. She was resting well and we didn't stay long. She had a blood transfusion overnight and they might try to feed her tomorrow. Their plans change so frequently though. They have to go with the flow that Ciara's sets. It's all up to her. Please continue to pray for our angel. She is doing so well.

A minor set back

My wedding rings on her arm.

Stretching.

Ciara is still doing well in the NICU. Today she weighed in at 1lb 6 oz. She had a good day yesterday and we went for our visit during her cluster care time, so I got to change her and hold her while they changed her sheets. Today's visit was a little different. I went during her cluster care time and changed her diaper, held her while they changed the sheets, etc. Then they put in a new tube to her stomach because they had plans to start feeding her again. The tube went in fine and they called for an x-ray of her chest and abdomen to check the placement of the tube. The x-ray showed the placement was fine, but it did show some chronic lung damage. She has a small leak in one of her lungs. It is not anything that requires surgery, but the doctors decided she needed to be put back on the oscillating ventilator to help that lung heal. I stuck around until they changed ventilators and she was stable. She seemed to take the transition very well and only cried for a couple of minutes. It is a step backwards, but only a little one. We have been very fortunate that this is our first set back. I can't believe she is already 11 days old. Her eyes were open for a long time today and every time she heard me speak she would open them back up. She is so very precious and she smells so wonderful. So because she is on the oscillating ventilator I will not be able to change and hold her. Until she is able to be switched back to the regular one I will simply talk to her and keep her company during my visits. Please continue to pray for our angel. The Lord has blessed us with this wonderful gift and I will be forever grateful.