(im copying these updates from Olivia's Caringbridge website)
1:00 am, My Milk is starting to come in!!!
Olivia's doctor called today with her update. Last night she had 5 bradycardia arrhythmia's. They had to help her with one. Bradycardia is when she forgets to breath and her heart rate drops. They typically can help her remember to breathe by rubbing her back. Her blood gases came back and showed she had Metabolic Acidosis. A heart murmer also showed up. The doctor explained it, but there was so much information, I got confused. She said she didn't think it was anything to be too concerned about, but she was going to watch it closely. If needed, it can be treated with medicine. At 2:00 pm, she was given a feeding tube. It runs down her little nose and into her tummy. They will feed her every 3 hours and she will get 2 milliliters of breast milk each time. They also have her on the lowest level of oxygen, which is awesome! They did say now and then they bump it up, but for the most part, it's on the lowest level. We also were able to hold her for the first time. My heart melted, it was so amazing! When the nurse put her in my arms, she opened her eyes and just snuggled into the blanket. When she got a little fussy, Danny recited the book we read to her every night while she was in the womb and it calmed her down. It was so amazing. I was even kind enough to let Danny hold her for a couple minutes. :)
We also met Olivia's Roommate... uh hmm... "boyfriend" parents tonight. They brought Olivia a little monkey in from him. His name is Omi. They said he must really like her because he ran off the past few babies they tried to put in with him.
Olivia had 4 Bradycardias while we were here today. The nurse had to come in on each one of them. She just rubbed Olivia's back and got her back on track. Let me tell you, it sure is scary. her machine beeps my heart stops. The nurses here are great. They are responding to Olivia (and all the other babies) within seconds of the machine beeps.
Olivia weighs 2.6 today.
I got to hold Olivia again for the second time today. This time I held her skin on skin, or Kangaroo Care. They place the baby on your chest. I had tears holding my little girl so close to me. I got to hold her for over an hour! I felt her heart, her breathe, her squiggles, and her grabbing at my skin. It was so amazing. I hope that someday soon Danny will be able to do this with her.
12-8-10 Wednesday. Olivia was put back on CPAP (Continuous positive airway pressure). They had to raise her oxygen levels and her breathing has been fast and she keeps having pauses and drops in her breathing. The nurses had to help her out 5 times in 3 hours this morning. They say the CPAP will help keep pressure in her lungs to keep them open. After the CPAP was placed, Oliva was able to be back on the lowest level of oxygen.
They were also able to pull her UAC line out of her umbilical cord today. Her biliruben is 3.1. Hopefully they will be able to pull the light off of her in a day or two. They are still giving her a dose of caffeine daily. They have been able to hold off on blood transfusions so far.
I did learn that by me having Gestational Diabetes was a good thing. it helped make my baby girl be just a little bit bigger.
They also did an ultrasound today, they say they do them on all babies under 32 weeks gestation. The results hadn't came back before we left. I didn't catch what type of ultrasound it was, Danny thought he heard it was a brain ultrasound. We will find more out about that tomorrow.
Baby girls kidneys are still immature and she is peeing a lot.
Olivia still has a heart murmer. They did a cardiac echo on her tonight. The PDA (Patent Ductus Arteriosus) is not closing up on it's own. This is very common in premature babies. She has a big PDA and they are going to give her medicine to try and close it. They will give her 3 doses of medicine every 12 hours. During this time they will have to stop her feedings and she will just be on IV fluids. Hopefully this does not dehydrate the little girl. She will have another cardio echo done on Friday to see if the medicine worked. If not, she may have to have surgery to fix it.
Olivia will also have a PICC line put in tonight. She weighs 2.7 today.
She is such a cute baby. I can sit there and watch her all day. She loves to stretch those long legs and toes. It's so cute. I love my baby girl.
*Danny called at 11:00 PM to check on Olivia and they had not put her PICC line in.
12-9-10 Thursday. We called for updates on Olivia at 3:30 and 5:30 this morning. They still had not put it in. They said they had a couple other babies a head of her.
Today we made it down to Danny's work to have Olivia put on his insurance. I know now why he gets speeding tickets, we passed 16 cops on the way from Harrisonville to the Hospital!
10:00 am they started to work on Olivia's PICC line. We were able to tell her good morning and are waiting for them to let us know it's done. It should be about an hour. They have a decent lounge with free internet. Danny is addicted to the free coffee/espresso machines.
Olivia's PICC was done around noon. The nurse blew 2 of her blood vessels in the process. :( They were able to take out her umbilical cord UV today. There were tears shed by Danny & I when they pulled the tape off of her belly. Poor little girl started crying, it broke our hearts. The nurse is going to check on the PICC about every hour to make sure it's doing ok.
Yesterday was a very emotional day for us.
The doctor came in with good and not so good news. The good news, he didn't hear the heart murmur on his stethoscope. They are sending a cardiologist from childrens mercy in today to run another heart scan on her and see if the valve is closed.
The not so good news. Little Miss Olivia has some slight bleeding on her brain. The doctor classified it has a level 1, non severe. Severe bleeding can cause major problems for the little girl. They will be doing another brain scan next Wednesday to see if the bleeding is still present.
And more not so good news. A part of Little Miss Olivia's brain did not completely develop. The CORPUS CALLOSUM is the neural bridge that connects the two hemispheres to each other, located centrally in brain.
Danny & I also got to change our first diaper together. She started to cry and Danny gave up. :)
Olivia is having a good day today. She is on room percentage oxygen (21%), she gained 3 ounces and is now up to 12.10 and she is getting lots of rest. She also had her photo therapy light removed. Her biliruben count was good, they said it is common for it to come back in a couple of days.
I got to change another diaper today. SUCCESSFUL! No tears or spills!
The Heart Doctor hasn't been in yet today (1:00 pm). I am anxiously awaiting the results!
The Heart Scan reults are in. She has went from a Large PDA to a Medium PDA. They are going to treat her with another dose of medicine. Sunday they will do another scan of her heart and we will go from there. Typically they only give two doses of medicine before surgery. If a baby is stable with their breathing they will wait and watch before surgery. I sure hope this second dose of medicine works! My poor baby can't eat until Sunday! :( After the scan she had to have her oxygen turned up a little, 24%, but I'm happy with that. She is doing so well.
They took her "sunglasses" off today as well. It's so cute watching her open her eyes. She also has some long eyelashes. We can thank her daddy for those. Uncle Jimmy & Aunt Heather visited today.
Olivia is off to somewhat of a rough start today. She is keeping her nurses on their toes. She has had to have a lot of extra help breathing today. She is having to have her oxygen turned up pretty high for her. It's been as high as 47% today. They refitted her CPAP and hope it helps. They also did a chest x-ray, her lungs came back good and they don't think she has an infection. They are going to give her a dose of antibiotics just in case. They ordered more blood gases and cultures. They will do another chest x-ray in the morning, as well as the heart sonogram and more blood gases.
They had to work on her PICC today as well, it was 0.5 cm in to far, so they moved it back.
Also found out that she has a Pectus Excavatum, a congenital deformity (often present at birth) of the sternum, which is depressed into the chest, resulting in a "caved-in" or sunken appearance.
Little Olivia has to also start blood transfusions today. Im so scared for her. The doctor is hoping that this will give her the boost that she is needing. Gar & Papa are visiting today.
2.14 pounds and snow on the ground!
12-11-10 Saturday Afternoon
Update on Olivia. Afte changing the CPAP, her breathing didn't get much easier for her. We are waiting on the reults of her cultures to see if she has an infection, and they went ahead and put her on a ventilator. They also took out her feeding tube for the time being since she can't eat while she is on the heart medicine.
The doctor said this is typical for babies her age.
Sunday, December 12, 2010 1:11 PM, CST
Olivia is doing great on the ventilator. She is having quite a few suctions today. When the ventilator is in the mouth, it's a foreign object to the body, and the body produces mucas secreations, that is what they suction. The nurse said she had a great night and she needed the rest. The blood transfusion is doing it's job, her color is so much better today then yesterday.
We are still waiting to hear from the heart sono/doctor to see if she will have to have heart surgery. If so, she will have that on Monday.
2:30 pm. The cardiogram is done and the PDA is smaller! That is fantastic news!!! That means no surgery for little Olivia! They are waiting on some blood cultures results to decide if they want to try one more dose of medicine to try and completely close the PDA or sit and wait for it to do it on its own.
She is still doing awesome on the ventilator, she is almost to the point where they can take her off, however the doctor wants to keep her on it a while longer. When she was on CPAP she was really fighting and working hard to breathe and the doctor wants her to get more rest before putting her back on the CPAP. She has been sleeping so good, I've been in the lounge most the day so I won't disturb her. I can sit and watch her sleep all day long.... wait, I already do! :) Gar came to visit today.
2.12 pounds today!
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Monday, December 13, 2010 4:29 PM, CST
12-13-10 2.14 pounds! The nurse said Olivia had a great night! She said that Olivia has been "toying" with her and the doctor today. When she is on her belly she is great, but when they put her on her back to examine her, she starts causing her oxygen levels to drop and needing assistance. But as soon as they lay her on her tummy and leave hear alone, she is back down to 21% oxygen again. Little stinker! She also has only had a few suctions today, awesome!
When I got there today her eyes were peeping open and she was sucking her fingers.
The doctor said they are not going to give Olivia the heart medicine again. They will have to push her hard the next day or so to see what the PDA will do. Hopefully it closes and doesn't get bigger. They are going to start weining her off of her ventilator starting at midnight and they are going to start feeding her again starting at 5pm. She will get small feedings for 5 days and then they will start increasing the feedings once she is doing well on them. Her urine out put is on the Low side of Normal, her sodium level is good and she doesn't have an infection. They said it's probably just her lungs acting her age(28 gestation). Her biliruben count was good as well. She is also off antibiotics, she had her last dose last night. She is still on caffiene. When her oxygen drops, she is getting it back up to the normal rate on her own with out any nurse assistance or extra oygen needed. I'm so proud of my little girl!
My milk still hasn't really came in. I'm still getting around 10 mils each time I pump. I've been working with the lactation ladies since I delivered. I've tried all their tricks and still am not having good results. They encourage me not to stress out and get frustrated. That's easier said then done! Every time an alarm goes off in Olivia's room my heart stops!
Olivia will be 29 weeks gestation tomorrow! 11 more weeks until it's 40!
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Tuesday, December 14, 2010 8:24 PM, CST
Olivia had another good night, she is doing really good on the ventilator weaning. She is currently on 25 breaths per minute (which is the amount of breaths the ventilator makes her take) and is on 21-24% oxygen. She is also doing great on her feedings. I'm still working with the Lactation ladies for more milk production. She recommended a herbal pill to try if the increased pumping doesn't work. Olivia is still real touchy with the nurses when it comes to her daily cares, but she is getting better. Her blood gases and biliruben were also good.
I got to hold Olivia (Kangaroo Care) again for over an hour. It is total heaven to hold her so close. I know danny can't wait for his turn to hold her.
The doctor did the brain scan on Monday (instead of Wednesday) and the bleeding is still a level 1. There is no more bleeding, according to the Nurse Practitioner, the blood is still there but should absorb and go away like a bruise. They plan to rescan her in about a month.
The doctor also got Danny's FMLA paper work filled out. Yay!
Danny would like me to add that he and Olivia aren't sure about some of the nurses up here, especially the nurses in training :) They ripped her precious skin on her belly, they hold an object in their hand and spend 5 minutes looking for it, and they put the diaper on backwards... I asked about this and she said it was easier to do it when she was on her belly... sure :)
Wednesday, December 15, 2010 4:19 PM, CST
Olivia had another great night! She now weighs 2.13 pounds. Her urine output is getting better and she is now pooping again. :) (she'll love me for that information when she gets older)
When we arrived this morning they had already taken her off of her ventilator. She is now on the CPAP again. She was having some issues adjusting to it this morning, running high heart rate, high tempature and high oxygen needs. She was using 34% oxygen on her belly and at times needed up to 50% oxygen on her back. She has since then calmed down and is happily back on her belly and at 34% oxygen.
The doctor said her chest x-ray was "hazy" this morning, he will run another x-ray in the morning. I asked him what "hazy" meant and he just explained that it could be from the ventilator or just her imature lungs. He didn't seem very worried about it.
Her blood gases came back good and they will run more on her at 5pm.
Gar, Uncle Jimmy & Cousin Lily came to vist today. Her 5 pm blood gases looked good.
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Thursday, December 16, 2010 2:29 PM, CST
Olivia had a decent night. The nurse said she had to turn her oxygen up to 48% a few times. Olivia weighed in at 2.15 pounds!
I got to hold her this morning for over two hours! She snuggles up close to Mom and goes right to sleep.
Her chest x-ray ws good, the doctor said it was better then yesterday, so he believed that yesterday's "hazy" x-ray was due to the ventilator. He also said her blood gas looked good. Also, the nurse didn't hear her heart murmur this morning!
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Friday, December 17, 2010 5:11 PM, CST
Olivia weighs 3 pounds!!!
She is doing great. Today the nurses took her off her CPAP to give her nose a break, they thought it looked brusied so they put her on a Nose Canula today. The doctor said her blood gases look great so she is going to leave her on the nose canula as long as she can take it. Her urine output is doing better today, her oxygen has been between 27%-40%. Danny and I both got to hold her today. We held her skin on skin/Kangaroo care.
Saturday, December 18, 2010 6:01 PM, CST
Olivia had another great night. She is weighing in at 3.1! The doctor said she is still doing good on her nose cannula and is going to leave her on it. She may even get a new isolate bed! Her blood gases and labs came back great, the urine output is doing much better. Olivia is being picky again about being on her back, she just doesn't like it and wants to be on her belly.
I got to hold her for about 3 hours again today. It is the best feeling in the world! Gar & Papa came to visit today. Olivia also lost her umbilical cord sometime last night or early this morning.
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Sunday, December 19, 2010 5:08 PM, CST
Olivia is still kicking butt on her nose cannula. Her oxygen levels are better today then they were yesterday. She is still showing her temper to the nurses when they go to do her cares. She loves when mom does them and when I hold her. I held her again today for a little over an hour. Our room has such a chill in it that I was afraid she was getting cold.
Gar came to visit today. We were sitting there watching her sleep and she decided to pick her head up, completely off the bed, and turn it to the other side! I was so amazed! She is such a strong little girl.
She only has electrolytes and a xray scheduled for tomorrow. The xray is to just check the placement of her picc line. She still is getting daily doses of caffeine. They upped her feedings to 6 mil. As of last night, she weighed 3.2!
Sunday, December 19, 2010 9:47 PM, CST
Just a quick update after her nightly cares.
Olivia now weighs 3.4 pounds and she is 16.5 inches long! My baby is growing like a weed! Keep it up Olivia! Mommy and Daddy are so proud of you!!! We love you!
Monday, December 20, 2010 4:01 PM, CST
5 more days until Christmas little girl! I know Santa is making a special stop at our house for you!
Today, Olivia is needing a little more assistance with oxygen. Her levels have been in the 30% all day. I got to hold her again, she lifted her head off my chest and turned it to the other side twice! She is such a strong little girl!
Olivia had some special visitors today. She got to meet Rylee and Jordan, their mom Kari and their aunt. Rylee and Jordan is having their 2nd birthday today and stopped by the NICU. They lived at the NICU for a long while when they were born too. They are strong little girls!
Her feet are still swollen, they said that will stop once she is primarily on the breastmilk. They have her up to 10 mil on the breastmilk 8 times a day, and I barely pump that. So once my supply is low, they will start giving her donor breast milk. I really wish my milk supply would start picking up! I would like for her to only have my milk, but I know that probably won't happen. As long as she is getting everything she needs, I will be happy.
The doctor didn't have much to report today. She said she isn't ready for the low pressure nose cannula yet becuase her breathing is still fast.
That's all for now, I'll update more when the night nurse comes and does her cares.
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Thursday, December 23, 2010 6:05 PM, CST
Sorry it's been a few days since I last updated everyone on Olivia.
First I'll start off with her weights.
12-20-10 Monday 3.6
12-21-10 Tuesday 3.7
12-22-10 Wednesday 3.8!
Olivia still might loose a little water weight, as her diaretic starts working. Tonight she is up to 20 mils on her feeding. They are adding an extra 22 calories to her feedings. They hope that once she starts gaining more weight that her lungs and respitory will start kicking into gear.
They had to put her on a new CPAP because her oxygen needs were getting higher and higher. They were getting up into the 60% during her cares and about 45-55% while resting. It makes her look like a Rhino or Elephant! Poor little girl!
She is doing much better today on her oxygen. She has been between 25-35%. Danny got to hold her today, but it was very difficult with the Rhino CPAP and her oxygen, heartrate and respitory rates dropped. Maybe tomorrow will be a better day to hold her.
The CPAP also makes her little eyes swell, so the nurses are making sure to switch which side of head she sleeps on with each care. She is also still on Caffeine. Her Hematocrit (volume of Red Blood Cells) levels showed up a little low but they said they are not going to do a blood transfusion. Oh, they had to put the chin strap back on her because she won't keep her mouth shut and she loses oxygen.
She has been resting very well today.
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Friday, December 24, 2010 9:25 AM, CST
Just a brief update before we head off to the hospital. Olivia weighed in at 3.7. The ounce loss is good for her. She is so swollen, her chin strap was leaving indentions on her head. I felt so sorry for her, so did the nurse. She took it off for almost an hour so I could run her little head and ears.
The doctor called this morning and let us know that she is still on CPAP and her oxygen levels have stayed in the 30% range. She had a good blood gas this morning. They are also stopping her IV fluids today and taking out her PICC! My little girl is progressing and growing so fast!
As of Olivia's 8 pm feeding she still weighs 3.7. She is now on 22 mils with an extra 24 calories added to it. She is also out of breast milk and now using donor milk. This depresses me a great deal that I can't provide for her. What I do get is still very little, the lactation lady told me to side track my mind to help me, well it doesn't help because I end up spilling it! Then I cry and that doesn't help production either! I think I will try one of those Herbal pills the lactation recommended.
Merry Christmas Eve everyone!
Saturday, December 25, 2010 8:49 PM, CST
I was so happy to be able to spend Christmas morning with Olivia. She is still having some slight struggles with her breathing today. She was having apnea and bradys today. (Apnea is where she stops breathing and bradys are where her heartrate drops low).
Danny got to change her diaper and take her tempature with no tears!
The doctor came in and said she looks & sounds good. Said she had great color.
We are waiting to hear back fromthe nurse to find out how the rest of her day went.
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Sunday, December 26, 2010 8:55 AM, CST
Well it took the nurse over 2 hours to get us called back last night, so here is last nights update.
The nurse was worried about all the bradys and apnea's Olivia was having and called the docotor to come check her out. The doctor ordered blood cultures and a CBC (complete blood count) to see if she may have an infection or cold. She is also thinking that she might need another blood transfusion. She lost an ounce so she is now 3.6 pounds.
Fast forward to this mornings update: Doctor doesn't have the results of her blood cultures (they take 24 hours for results) but she went ahead and put Olivia on an antibiotic to stay ahead of anything that "might" show up on her blood cultures. She is also getting a blood transfusion today. I hope my little biscuit pops out of this funk soon! She is giving her mom and dad a heart attack with all these apneas she is having!
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Tuesday, December 28, 2010 3:51 PM, CST
Olivia's been having a few more drops in her breathing/oxygen the last two days. They tested her for infections and RSV and they came back negative! The doctors/nurses think she may have acid reflux and they can test her on it when she gets a little bit older.
She also had a chest x-ray. Monday they tried explaining Chronic Lung Disease to me. I guess all preemies have it and they grow out of it. They say that maybe an inhaler in the future could be the only effect from it when she grows up. Her x-ray looked better then her last one.
Sunday she weighed 3.8 and Monday she weighed 3.9. While I was changing her today, she almost pooped on me! She hadn't pooped in 2 days and the nurse told her it was time for a supository, I lifted up her bottom to change her diaper and out it all came! Stinky little girl! :)
I also got to hold her for 3 hours Monday night. She is such a good little girl.
Tuesday morning, they changed her CPAP again. I hope that this one works better. Her blood gas showed she still has carbon dioxide in her lungs, another cause from her being a preemie. Her oxygen has been between 26%-37% today.
Tuesday she weighs 3.7 pounds
Keep up the good work princess!
Wednesday, December 29, 2010 6:29 PM, CST
Olivia is still having quite a few Desats. They are going to put her on another diaretic, this one is taken orally. They hope that the second diaretic will get all the fluid off of her and will help with her breathing. She is still enjoying being able to sleep on her belly.
They added an iron supplement to her feedings and is now eating 29 mils of milk.
Olivia had to move rooms because Omi is having eye surgery today. She has a new full born baby in her room now. His name is Daniel. The new baby had some issues with his lungs and he shouldn't be staying much longer before he gets to go home. The new family is nice, however they are loud and they have loud children that scare Olivia. Her stats will be fine, and once they come to visit, she starts declining and become restless and gets very startled. I infomred the nurse about it and they have noticed it too. We may be moving back to Omi's room soon.
She weighs 3.7 pounds today. Aunt Norma & Aunt Lucy stopped by today.
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Thursday, December 30, 2010 6:23 PM, CST
Olivia's doing great on her CPAP. Her oxygen has been 21-25% all day. The doctor said she her oxygen levels are good enough for the nasal cannula, however she is still having Desats and she would like to see the number of Desats go down before they switch her over.
She is now getting a sodium supplement with her meals because the diaretic is causing her to lose sodium. Her feedings are still at 29 mils and they are now adding protein to her meals. She had one Brady today.
I got to hold her for about 30-45 minutes today. She was fussy and kept trying to pull her feeding tube out and she kept knocking off her CPAP and wiggling out of it. Little stinker!
She only has an electolyte scheduled for tomorow. Papa & Gar visited today. They got to watch her get a diaper change and tempature, as well as a sponge bath. She loved the bath! she also weighed in at 3.7 today.